I am a flower, I am a tree, I am the sun.

The one no one wanted to write….

Hello, Emma here. Abigail’s big sister. If you’ve been following Abigail’s blog for some time then thank you. We hope it’s brought you insight, comfort and inspiration. We know it’s bought tears but Abigail’s brilliant writing and refusal to be downbeat also meant it brought smiles and even laughter.

We as a family could not be prouder of Abigail for everything she achieved with her awe inspiring writing. However, you’ll also know it was never going to be a blog with a happy ending.

Abigail sadly passed away on October 15th 2020 aged just 47.

A short time afterwards my dad said we should write one final blog. In September Abigail gave me her passwords and showed me how to use wordpress. She needed help to put together her final blog. I also hope it was also her way of giving me permission to do just this.

I wanted the chance to let you know what happened after she last wrote, and also to reflect on her life. At the end you’ll find the words I wrote for the Eulogy at her funeral. You’ll also finds words written by her ‘best girls’ (as she referred to them) – Belinda and Vicki. You’ll also find a brilliant poem written by my dad, in the week after she died. Abigail always used to like naming her blogs after a favourite song of hers. This time I’ve gone with the opening line to my dads poem:  ‘I am a flower, I am a tree, I am the sun.’  Which incidentally HAS been made into a song by my talented cousin Chris and his wife Annabelle.

You can hear that here…

I am a flower, I am a tree, I am the sun – By Chris and Annabelle South.

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WHAT HAPPENED AFTER THE LAST BLOG

It’s incredible to think that between the last blog being published and her passing there was less than 3 weeks. As you can imagine it was the hardest few weeks of our lives.

That’s not to say there weren’t good times. There was also one last visit from Abigails ‘best girls’. Belinda and Vicki got to see Scooby –  the wonderful mobility scooter they’d helped research and choose. The 3 of them had some happy days chatting, test driving Scooby and one last memorable trip to lower town harbour when the sun shone and there was even a folk band practising amongst the boats.

Sadly, the permanent drain that Abigail mentioned in her last blog never happened. We had all pinned so much hope on it easing the discomfort of the fluid retention from her Ascites, but it wasn’t to be. In the end the doctors said there was simply too much risk of infection and instead gave her another temporary drain. Despite getting so much joy from both Scooby the scooter and Priscilla, Queen of the Preseli’s (the new wheelchair accessible vehicle), in the end she was so immobile she left for the hospital in an ambulance – at her own request. Mike and Mick from the Welsh ambulance service actually carried her out and were both incredible key workers who went above and beyond to help her. A day later they even gave up their break to go and find her in the hospital to say hello and check up on their ‘favourite patient’. That says a lot about them – but also about the effect my sister had on people.

Sadly, despite losing around 8 litres of fluid, the last drain didn’t seem to give the same benefits and Abigail was in hospital for another week recovering in ward 10 of Withybush. Her lack of mobility meant that my parents decided to install a stair lift at home and also convert the downstairs toilet into a shower room. As the house was a little like a building site I decided to rent a bungalow in a nearby village which would be easier for Abigail to move around in. She was excited about the idea and even thought of it as a bit of a holiday. It was a ‘holiday cottage’ after all.  It was also right near her favourite beach of Pwllgwaelod. The plan was for Abigail and I to have some quality time together with Ma, Pa and Thomas Goswell visiting in the evening. It didn’t quite turn out like that.

It’s shocking to look back and think just how quickly she deteriorated – in terms of her mobility especially. In two weeks she went from walking with a stick to walking with a frame to not being able to walk at all. Being her full time carer meant just that. Having an alarm so she could call me in the middle of the night to help her to the toilet or commode. Managing drug schedules, helping her shower and wash, applying creams, sorting meals and even holding her hand as she tried to get to sleep. (I wish I’d done that last one more). I’d do it all a thousand times over, but it soon became apparent that I wasn’t sleeping much or coping on my own.

On the Saturday night Abigail was struggling to breathe and asked me to call 999 at about midnight. By a great twist of fate it was Mick again (and another brilliant paramedic, but I’m really sorry I can’t recall his name) who put her at ease and gave her the oxygen and drugs she needed. I thought they’d want to rush off and have busy paramedic work to do – but when I offered them a cup of tea they stayed and chatted till about 5am! I took a photo that strange night and two things strike me about it. One – Abigail’s ironically wearing her ‘Just Breathe T shirt’ while surrounded by oxygen and medical equipment – and two, she’s smiling. Again – that’s a testament to the paramedics putting her at ease and Abigail’s determination to be happy and find joy where others probably couldn’t.

After getting to sleep around 6am I called for back up.  Mum and Dad moved in to sleep over too and help out, particularly at night. It was a fortnight I’d like to push to the back of my mind but that’s not to say there weren’t happy memories too. A week before she passed, two of my best friends from school drove all the way from England to spend a couple of hours socially distanced from us. Claude and Helen also brought flowers for Abigail – and we all know how much she loved flowers! As with every other visit and every other gift or card or kind word – she was incredibly grateful.

One day we celebrated actually getting up and washed and eating breakfast before 11 – no mean feat! Abigail chose to play The Pointer sisters ‘Jump’ and asked me to dance. She did a chair dance while I danced like an idiot around the kitchen – even managing an impromptu Micheal Jackson moon walk at one point. She laughed and it was honestly such a happy moment. Another time as we were cooking a Sunday roast we played John Denver’s ‘Grandmothers feather bed’ and all sang along as a family. I filmed it – and although she looks frail, it still brings back happy memories. I didn’t know then it would be the last time we’d all sit at the table together to eat a roast dinner.

You never really know when the last of something will happen. Eating the last meal, watching the last episode of bake off, singing together, having a final hug. Yes, we’d all had three years of worry and nearly three years of coming to terms with the fact that Abigail’s cancer was terminal – but in the end, the end came quickly and suddenly. And yes, it was a shock.

On the Tuesday we even met with her palliative care team who suggested new drugs, oxygen being delivered to the home and she was booked in to hospital the following week for another drain. We were planning the next stages of care and while we didn’t have a prognosis were expecting another few weeks or months with her in our lives.

On the evening of Wednesday 14th she again complained about not being able to breathe so we again called 999. I expected a repeat of Saturday night but this time they wanted to admit her. I hastily packed an over night bag. Thanks to Covid we weren’t allowed in the ambulance so dad and I followed her the half an hour drive to Withybush hospital. I saw her arrive and go into and A and E and said we’d be waiting outside and would come in as soon as we were allowed. We weren’t.

Instead we went home, had a glass of wine, texted Abigail and tried to sleep. Through the whole ordeal of the paramedics being in the bungalow Thomas Goswell had remained usually subdued and quiet. He then did something he’s never done and came into my bedroom and put a paw on my bed. We held hands like family members concerned about their loved one. If you ever need proof that Animals understand a hell of a lot more than they let on – the proof is in that moment.

At 3.30am my phone rang and it was Abigail. She wanted to tell us which ward she was in so we could find her in the morning. Thank god I put her on speaker phone and woke my parents so we could all talk to her. She’d had a lot of morphine and there was a nurse in the room at one point so I have to say it wasn’t the longest conversation. All I can remember saying is that we loved her and she should get some sleep because we’d be in to visit her first thing in the morning. We have a family song from our childhood about loving each other, which I meant to sing that night but decided it was too late and we’d sing it tomorrow. Of course we never did and I will always regret that. How she had the capacity to find her phone and call us I will never know – but I’m so, so glad she did.

At 6.20am I had a call from a nurse saying we should come in. Within ten minutes we were in the car but by the time we got to the hospital it was too late. We were utterly shocked when the doctors told us she’d died. We didn’t see it coming. We really didn’t. I believe Abigail did though.

On her very last day she told us she no longer wanted to live. She’d been such a fighter right till the end and always able to find happiness. But in those last few days she really couldn’t fight the pain. We didn’t want to hear it as a family of course. We simply cried and told her we find ways to make her more comfortable. I believe She knew though that it was her time to go. She knew and she tried to warn us. We had so many group family hugs that last evening, for which I’ll be eternally grateful.

In the end it was a nurse called Angelina who was with Abigail in her final moments. My Dad pointed out how fitting it was that Angelina means angel. I’m beyond gutted we couldn’t be there but there’s no changing that. We were told by another nurse who was still on shift that she talked about us and knew how much she was loved.

We chose to see Abigail that morning and I’m actually really glad we did. You could argue it was no longer Abigail.  And it wasn’t really, but the good thing is she genuinely looked at peace. It sounds a cliché but she looked happy. She had a little smile on her face and looked as though she was sleeping sweetly and having a happy dream. After the awfulness of the proceeding 24 hours it was the only thing that gave me comfort. It really was a blessing to know she was no longer in pain. We stayed with her for around two hours and even sang our family song to her. Then we said good bye and left. Left into the most beautiful sunny day west Wales had seen in a while. People were rushing to work, the radio was playing the same old songs and life went on as normal. For everybody else anyway. I know for us, her family and her friends: that’s going to take some time.

I didn’t want to focus too much on her death, but honestly it’s all I’ve been able to think about for months. I’d rather focus on her life to be honest. Please do read my eulogy below as I’ve tried to do as much justice to her varied, unusual and very full life there. Hopefully I’ve captured her essence and put into words just how much she adored life. It is important to talk about death too though. We live in a society that hides death and glosses over it and yet 150,000 people die every day. The more we learn to understand  it and try and cope with it, the stronger we become.

I know she died too young. I know I’m going to miss her every day for the rest of my life but hopefully she didn’t die in vain.  Through this blog and through the way she lived her life she left an incredible legacy and some very important philosophies. Her kindness and generosity is something that stands out. I for one am trying to be a bit more ‘Abigail’ and make time for people, check in on them and of course write thank you letters and buy presents more often. She really was the master of that.

I’m also making sure I check my boobs regularly. And I’ll be making sure that her message of CHECK YOUR BOOBS AND BITS – gets spread far and wide to help save even more lives through early diagnosis.

Most importantly perhaps, I will endeavour to enjoy every moment and appreciate all that I have in life. Abigail managed it in the most trying circumstances, so we should all try too.

I love you dear sister and for you I will carry on loving life and whenever I can – turn my face to the sun. xx

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WHAT CAN I DO?

Plant a tree. We didn’t want flowers at Abigail’s service but instead asked people to plant a tree in her memory. She LOVED trees! People have already started planted trees in her memory all over the world. My parents have chosen a copper beech – but choose what ever you fancy. If, like me, you don’t have a garden you can choose to have a tree planted for you in a forest. I chose https://www.nationalforest.org/get-involved/plant-a-tree/dedicate-a-tree but there are others.

Give to charity. There are many out there who help cancer patients or their families – but here are a few suggestions:

Paul Sartori are a charity local to Pembrokeshire as there are no hospices. They were incredibly helpful to Abigail – providing equipment and facilities around the home to help make her life easier. They also continue to provide us with free bereavement counselling – https://paulsartori.org/

Make2ndscount was a favourite charity of Abigail’s. Through research, campaigning and support, they give hope to those affected by secondary breast cancer and to their families – https://www.make2ndscount.co.uk

Breast cancer now – another great charity who do a lot of research into secondary breast cancer – https://breastcancernow.org/

Give Blood. Abigail benefited from many blood transfusions in her last year. During lockdown it’s classed as an essential journey and its easy and safe to do so. You can register here if you’re in England.. https://www.blood.co.uk/

Feel your boobs and bits! I’m sure you know what you’re doing – but here’s some helpful advice: https://www.nhs.uk/common-health-questions/womens-health/how-should-i-check-my-breasts

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ABIGAIL’S REMEMBERANCE CEREMONY

Abigail was adamant she didn’t want a funeral. So we held a service at a crematorium but made sure we didn’t use the word funeral. Thanks to Covid there were only 12 people in the room and 18 outside in the cold. However we did make sure we played some of her favourite songs and remember the incredible woman that she was in the best way we could.

We’ve promised to hold a huge party in the next covid free summer so we can celebrate her life properly.

Below you’ll find all the words and some of the images that we used at the service.

To see all the photos we used and watch two videos click here: https://drive.google.com/drive/folders/1aTKpb1V0_KH9rB7JE94LZqHHfHdZzDij

DADS POEM

I am a flower I am a tree I am the sun

These have made my life and now it’s done

Remember me in these three things

Look up and smell the world and glory in what life brings

Take in the beauty enjoy the sounds

Please change the world for me, you have no bounds

I am a flower I am the sun I am a tree

Watch them for ever and think of me.

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VICKI’S WORDS

To my dear, dear friend AG.

I love that you’re always up for fun and adventure, making things happen, having a laugh and making the best of every situation.

I love how thoughtful, kind and generous you are. No occasion goes unmarked. You have a way of making people feel so special and loved.

I love that knowing you has made me a better person.

I love that your advice covers every angle every time.

These are just some of the reasons you will always be with me……

Every time I have an adventure, from afternoon tea in Windsor to skiing in the Canadian Rockies.

Yes, I will think of you EVERY TIME I have to put a pair of ski boots on, and EVERY TIME they have to stop the chair lift because some ‘twit ;-)’ has miss-timed it or in extreme cases has fallen off  (I’m laughing out loud right now…).

 Horses… from tiny ones in the rain to big ones being ridden in a muddy field…..

 Any kind of wager, from the horses, to a cheeky scratch card (or ten), to casinos, roulette and Oli’s Bar….

 Booze, from a cold beer / grasshopper, to a fancy wine or glass of prosecco – I will raise a toast.

 Cricket with a picnic on a sunny afternoon.

 The TK Maxx ghastly shoe rail…..

 Target shooting, followed by a sweet-treat.

 Face painting, from dainty flowers to full on tiger face!

 Food markets and Christmas fairs.

 And of course…Flamingos….And they are f-ing everywhere!!!! 

These are just a few things that will make me think of you each and every day, and smile.

BELINDAS POEM

Some things I’ll always remember that make me smile…  

I remember student days of laughter and cheer

The start of forever friendships and of course there was beer… and cider and snakebite and cocktails but mainly beer

I remember travels to far away places 

Swimming in the sea, trying new things and the sun on our faces

I remember discovering destinations nearer home

The Cotswolds, Cornish beaches, the New Forest – where we’d watch horses and deer roam

I remember the birthdays, the parties, nights out – with wine, beer, cocktails and bottles of fizzy

The singing, the dancing until we were dizzy

I remember the music festivals that went on way past dark

The comedy gigs and pubs in the park

I remember the things that make me laugh out loud

Like being chased off a beach where we weren’t allowed

Like getting ready for a wedding in a petrol station WC

or nearly missing another after a late night drinking spree

Like loosing a birthday cake, then remembering you ate it

and the seagull with issues – that made our sides split

What I remember the most is the friendship, the love and the moments that matter; we shared

And all of these my lovely one, will always be there

AND CAKE – I remember cake, and for you I will always eat cake and smile

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MY EULOGY

Abigail Goswell.

I’m not sure how I’m going to do you justice in around 15 minutes – but I’ll give it a good try!

Just saying Abigail’s name Or sissy poo or SP – as I started calling her a few years ago,  makes me smile.  And I hope when you think of her, you smile too. She really was the glue that held GozFam together – a name SHE invented and so many of you have adopted too.

I know today  – and many, many days that follow – will be full of tears and sorrow – but hopefully they WON’T be filled with regret. Abigail had the BEST doctors and nurses and palliative care team looking after her – but no one could make her better. Yes, she went too soon,   but we know in the end she couldn’t stay with us  –  because she was simply in too much pain. We, as her family, are devastated but we also know we did all we could to make her comfortable in her final months and days. But just as importantly,  we made sure  – and SHE made damn sure -that her final years were filled with the most incredible happy memories too.

Hopefully all the photos we’ve selected will remind you just how much Abigail loved life and how she seized joy wherever and whenever she could. You’ll notice a few themes – cake, prosecco, family, friends, sun, holidays, nature – and did I mention cake? Abigail’s ability to continue to enjoy all these things and more despite being diagnosed with terminal cancer never seized to amaze me.

There’s a quote on the order of service form Albert Camus. It’s a quote I hadn’t heard until I found it last week when going through Abigail’s phone – she had several copies of it on her photo gallery so I know it meant a lot to her.

He said this:   “In the depth of winter, I finally learned that within me there lay an invincible summer.”   It’s almost like Abigail took it on as a mantra. She was facing the hardest thing a human being can face and yet she had the huge strength to carry on and seize life and literally cling on to summer. She filled her life with flowers – especially peonies, with family, with friends and when she could – trips to walk amongst the trees or trips to the beach. Even as her world got smaller and smaller she would still find simple things like a hug or a song on the radio to make her smile. I spoke to her about a month ago and asked her how she did it? How do you stay so strong when you’re facing what you’re facing?; and she told me it was her choice. She said look, “I can choose to wallow in deep despair and depression or I can choose to get on with it and be happy and find happiness where ever I can.” And in that moment my little sister taught me more than any philosopher or religion could.

She taught me to take a moment to enjoy everything – no matter HOW small. A shard of sunlight, a bird singing – or of course the first bite of a cake.

I know she inspired you too. A couple of years ago she started writing a regular blog to document her journey with stage 4 cancer. It was always a tough read and I always cried – but she also made time for joy and humour in it. I can’t tell you how proud I am of her. She proved herself to be an incredible writer and she’s now had over 25,000 people read it from all over the world. We, as a family could not be more proud. Abigail’s other great mantra over the last few years was “feel your boobs and bits” – so please listen to her and do this as soon as you get home – and then every Friday after that.

I want to take some time now to reflect on Abigail’s life. We were lucky enough to have 47 incredible years together.

Not many of you will know this – but when she was born on June 28th in 1973 in Manama she made history. Her birth was the first ever in the country of Bahrain to be attended by the father. My Dad had to plead with the minister for health who then only let him in the hospital on the condition that he wore scrubs and pretended he was a surgeon! An extraordinary start in life for an extra ordinary human being.

Abigail and I had a hugely privileged and somewhat unusual childhood – living in Abu Dhabi, Bahrain, St Lucia and China. Our parents, as well as being the best parents in the world and showering us with unconditional love – helped Abigail and I develop a love of travel and an appetite for adventure.

In St Lucia my dad built us the most amazing climbing frame that had a flat top and we’d sit on it in the evening.  Mum would bring us out our tea which we’d eat while looking down the garden filled with banana plants all the way down to the Caribbean sea below. It really was idyllic.

I’ll admit though, I haven’t always been the model big sister. On her first day at school – a building that’s now the St Lucia school of music, I failed to tell her the correct protocol for lunch breaks. During the 11am break Abigail assumed it was lunchtime so ate the entire contents of her lunch box – leaving her nothing to eat at actual lunch. I was so embarrassed for her I pretended she was nothing to do with me. Awful!

Despite that, she was always a faithful loving little sister to me. She didn’t particularly have theatrical ambitions but she was always happy to help out when I decided that every Friday morning in Abu Dhabi we would perform some sort of play or musical number for my parents – or any visitors they might have. She’d faithfully get up at about 6am to start rehearsals and prepare costumes for what ever mad extravaganza I’d planned. She even tolerated my magician phase – accepting the role of magicians assistant!

Our middle eastern childhood together was spent sitting on beaches eating tinned mussels in 40 degree heat, sat on chairs outside watching James Bond films projected onto a car park wall. Learning to water-ski from the age of six, practising synchronised swimming routines together , practicing the piano when our limited TV viewing was interrupted for a prayer intermission, feasting on chicken sharwma in pitta bread and of course  being woken at about 5am every morning by the  mullah calling all good muslims to prayer. It was a different childhood – but one filled with sun and laughter.

When I was 12 and Abigail was just 9 our parents globe trotting took them to Shekou in China meaning that Abigail and I needed to go to boarding school. King Edwards school witley was our home for the next SIX YEARS. Despite the victorian plumbing, regulation underwear and strict rules that even rationed bath times for the first couple of years, both Abigail and I made strong friendships that have and will last a lifetime. Abigail was only allowed to join the school at such a young age on the understanding that she repeat a year –she never did . So,  Incredibly she did her GCSE’s  at 14 and her A levels at 16. I can’t imagine how difficult it must have been being over a year younger than all her classmates. My one big regret is that I wasn’t much of a big sister to her back then and I pretty much left her to get on with it and barely spoke to her. That she forgave me and went on to show me unconditional love tells you everything you need to know about how big a heart she had.

Our holidays though were spent in each others company. She adored spending time at my parents’ house in Wensleydale. Summers were spent taking long walks, picnicking and incredibly getting into our cossies and swimming in near freezing rivers and showering in waterfalls pretending we were in the 1980’s Timotei advert! It being Yorkshire there was also a LOT of time watching the rain and wind hit the windows while we played monopoly. And yes she always let me be the top hat!

Other holidays were spent flying to Hong Kong with large plastic signs around our necks saying – unaccompanied minor!!!  

We’d get the ferry to Shekou and spend our time setting off fireworks on the beach, and cycling around town trying unsuccessfully to buy western products like toilet roll and coffee. We were also lucky enough to watch Wham in China – even staying at the same hotel as the boys themselves. Somehow we worked out what room they were in and wrote a love letter to George Michael and put it under his door. Strangely he never replied!

But despite our privileged and very similar upbringing I do believe that Abigail suffered a lot more hardship and heartbreak in her young life than I ever did. At 16 she lost her very best friend at school Annette. The two were inseparable. But Annette sadly passed away from toxic shock syndrome. Then just over a year later when Abigail was taking a year out before uni her next best friend Geoff died in a car accident. We’ll never know how deep those emotional scars ran – but that she carried on and never lost her lust for life is a testament to her huge strength.

Abigail also showed huge strength in the way she chose to live her life by HER rules. She resisted the pressure to have a partner – choosing to focus on friends and family instead. Mums attempts to send her newspaper cut outs of the lonely hearts column were, shall we say – NOT very well received!

I remember once – when we’d arrived at our amazing hotel in Mont Tremblant in Canada for a skiing holiday – I looked at the log fire and snowy vistas and said – “wow this is so romantic – it would be a great to come here with a partner”. She gave me an annoyed look and said “OR,  it would just be nice to come with a friend – or your sister!” I couldn’t say much to that!

Now this may surprise you, but as a child Abigail always wanted to be an astronaut. It was a dream she firmly believed she could achieve – and even last Christmas her obsession with the cosmos meant she asked me for a moon lamp as a gift. She was also the sensible one amongst us though, so in case that career didn’t take off,   she enrolled on a degree in business studies at Derby university. Again she made some incredible friends that have been with her ever since – including one of her very best friends Belinda – who’s reflections you’ll hear a bit later. I want to thank both her and Vicki who she met later in her career at Draeger for being what she called her ‘best girls’. You’ve both become family and I’m so grateful for, not just everything you’ve done in the last few years of hardship and illness,  but over the decades being incredibly supportive friends to her. I know you’ll say the same thing I say when ever anyone says I’ve been an amazing sister – SHE made us amazing and we know for a fact that she’d have been there and done all of this and more for any one of us.

Abigail went on to have a hugely successful career in international HR working for big companies like Cable and Wireless, Drager, G.E and more recently Martin Brower. It’s no surprise that she dedicated her life to the human side of business because despite telling me she was an introvert – she really was a people person and cared about people greatly.

Over the last few weeks I’ve learnt just how much an impact she had at work– having so many messages from people saying they used to be colleagues but had become friends. Many took time out to message me and tell me how Abigail helped them. She not only knew exactly how to solve their problems, she knew instinctively when they needed her help. One person messaged me to say that Abigail was the only person who contacted her when she was feeling down and lonely. Somehow she just knew, and knew the right words to say.

There have been several occasions over the last few months when she’s turned to me and said – go and give mum a hug – or go and give dad a hug. She just knew, when I didn’t, when people were struggling.  And she knew how to make it better.

She cared greatly about things being done properly and about people being treated fairly. This was a trait she carried into her personal life – expecting great service and respect wherever she went. There are many organisations and individuals across the globe who have felt the brunt of an Abigail Goswell complaint letter. There was one hotel in London who after giving her and Belinda’s room away, fobbed them off with a dungeon room with camp beds who refused to acknowledge any wrong doing – but generally speaking she was a master at receiving apologies, promises of change as well as discounts or freebies. Even in her last few weeks she complained about treatment from one member of staff at the hospital. Not because she thought she’d personally benefit or ever see the person again – but to stop anyone else being upset in the future. She wanted to make things right.

I honestly believe that my sister was the most thoughtful and considerate person I’ve ever come across. Even in her final few years when she was going through the unimaginable,   she’d find time to help and advise others going through hardships. If everyone was a little bit more like Abigail,  I firmly believe the world would be a better place.

She was also the best person ever at buying presents. I apologise if my fashion sense takes a dive because most of the decent clothes I own are ones she’s bought me.  She always knew exactly what to get the parents who have everything too – one year buying them pink egg boxes with personalised labels that said “lovingly laid by the Goswell chickens”.

Even in her death Abigail showed that she was always thinking of others rather than herself. She was adamant that she wouldn’t die at home to protect our happy memories. And then,  as the ambulance took her to hospital that final time, what was one of the last things she ever said to me? It wasn’t – make sure you follow the ambulance – it wasn’t come and visit me –it was “can you tell mum and dad they’re left their bedroom window open?!!”. She was literally always thinking of others.

Parents – I’m going to have to do my best to remember your wedding anniversary now because it was ALWAYS Abigail organising flowers and reminding me. But thank you, from me, for raising the BEST sister a girl could hope for. The unconditional love you gave her shone through in the love she gave the world. You really DID do her proud.

I’m going to end now with another quote – not from a philosopher but from the wizard of Oz. Since lockdown Abigail brought together a mad disparate group of friends and family in what became known as quiz Akabusi. A Friday night online quiz / chat / drinking session which usually also involved fancy dress. The week we chose musicals as the theme, Abigail stunned us with her Maria from the sound of music, while both Julia and I dressed as the tin man. My final quote is something the wizard said to the tin man – and again it’s something I found on Abigail’s phone – so I know it resonated with her.

The wizard said: “A heart is not judged by how much you love; but by how much you are loved by others.”

Well, Abigail Goswell – you were loved enormously – why? Because you were so easy to love. You deserved it. You were thoughtful, you were generous, you were kind. Thank you for being you. Thank you for showing us to live in the moment and turn our faces to the sun. Thank you for 47 incredible years. Thank you. x

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Abigail’s Matchboxes.

Ever thoughtful – Abigail designed these herself. She designed them for giving out once she’d died. They never existed as a product but will now be sold and available for others via ‘Not on the High street’. We’ve given some out to friends and family and have more to give out at the big celebration of her life. We’ll be throwing a big party in the first covid free summer we get so we can celebrate Abigail’s life!

THANK YOU’S

A huge thank-you to all Abigail’s friends and colleagues who visited her in deepest darkest wales or messaged or sent cards, flowers or gifts and were there for her in those last few months.

A massive thank you to all friends of GozFam. After she passed we were overwhelmed with cards and flowers and incredible messages. There are too many of you to name individually! Your kind words and love meant so, so much to all of us.

The residents of Glynmel road, Lower Town, Fishguard. Your kindness and friendship has been out of this world. Thank you for showing us what a community is all about.

Lynda Doyle – You and your team went above and beyond in providing palliative care to Abigail. Thank you for bringing love and light in her darkest hour.

Klaudia Dobrzycka– Thank you for your medical expertise and care and attention. Abigail respected you so much and we know you did all you could.

Kim – I never really knew what an occupational therapist did – but I’m pretty sure you did way more than anyone else would have. Thank you for being a ray of sunshine.

DR Thomas. Thank you for being a caring and professional GP and even visiting Abigail at home.

Nicky – You and Abigail got close in those last few months I know. She so looked forward to all your massages and I know she got huge benefit and comfort from them too. Thank you x

Alice – Thank you for being such a great acupuncturist to Abigail. I know she really appreciated all your work. And I appreciated the surf lesson too!

Everyone at Paul Sartori –who helped provide Abigail with equipment she needed to make her life easier. A special thank-you to Sarah and especially to Elvire and Diana who continue to help mum, Dad and I through being excellent bereavement counsellors.  

The district nurses who visited every Thursday to check Abigail, change bandages and do what ever needed doing.

The Prof – (David M) We never met but I know how Abigail had huge respect for you and how you helped prolong her life with all the treatment. Thank you from the bottom of my heart.

The nurses at Elstree cancer centre – I don’t know you all by name but I went with Abigail for several chemotherapy sessions and was always amazed. Not just by your level of care, but by how you could make the process almost fun and be so positive and friendly.

Julia and Bruce Moffett – Thank you for all your work making sure we gave Abigail the best send-off we could.

My friends. Thank you for the phone calls, the flowers, the gifts, the cards. I needed you more than ever and you were there for me. I can’t wait for the vaccine so we can all hug again!

My rock – Siobhan O’ Neill. I don’t know how I’d have got through these last couple of years without you. Thank you for being you x

‘Cause the sun gonna shine, And in this heart of mine’

“Life is a Rollercoaster” might have been a more obvious accompaniment to this post, however I’m not in favour of the directly obvious song choice.

Suffice to say it’s been a really up and down few weeks. But I am still here, mostly with a smile on my face. I still put one foot in front of the other and turn my face to the sun. It has been difficult physically, from a pain and symptoms point of view but also emotionally and not least from a finding my way through the Pembrokeshire palliative care system perspective.

I had got used to finding my way through the Hertfordshire cancer centres. I didn’t have to think about who I called or what department was open when or who I could ask stupid questions to or who when everything else failed, I knew would find a way to help me. To take nothing from my shift to Wales and the brilliant service I have been provided since I landed on their care system, it is taking me a while to figure out my way through it, which is hardly surprising.

I have been asked a number of times whether I prefer the English or the Welsh system. Presumably this means specifically the systems I have become familiar with. Both are brilliant. I am more familiar with Hertfordshire simply because I spent 3 and a half years being treated there rather than Pembrokeshire which I am still finding my way around, and they are still getting to know me. Had I been given a choice I would never have felt unwell in June, had to be admitted and then never stood a chance of making it home. That lack of choice is not conducive to feeling brilliant. I have the hospital, the doctors, the palliative team, the hospice (in fact two), specialist nurses, district nurses and the list goes on. This is not something to complain about, and trust me I am not, but it’s not always easy to know which is the correct port of call. There are pros and cons to both Herts and Pembs and in the end its not as simple as which I prefer, no such luxury of choice. The point is they have had to provide very different care at different times as the needs of my illness and situation has changed and deteriorated. I am impressed by the care I have seen, apart from the occasional breakdown, and am truly grateful.

I have also been asked whether I would prefer to still be living at home in Hertfordshire. The answer is of course that I wish nothing had changed and that I was still able to live a healthy “normal” active life of a forty something. But I can’t, and wishing for what I can’t have is something that I try desperately hard not to do. I’ve always believed that giving yourself a satisfaction v. desire delta is the fastest possible route to misery. And so I simply don’t do it. I am happy for what I have. In the past, if I’m not happy with what I have, then I change it, but now, I accept what I have to and move on. Whilst I would rather be on Life Plan A, I am not, so I am very grateful to be housed in a beautiful place with my family. My sister and parents look after me unbelievably well. My small neighbourhood community make me feel incredibly at home.

From a treatment perspective, there has been quite a lot going on. Following the last drain, I had a couple of weeks respite where the pressure and swelling was considerably less. After that the fluid retained again. My breathlessness worsened considerably and my pain deteriorated. One speedy and uncomfortable visit to the GPs one afternoon I was given an given a higher dose of painkillers. And my lungs became a cause for concern. It turned out that my left lung had partially collapsed and wasn’t serving the rest of me very well. There is not much to be done about this. There are ascites/fluid sacks sitting around my lungs and abdomen which makes it near on impossible to figure out what to do. But the lung is not worth it’s own drain intervention and anyhow, the abdomen drain will reduce pressure on the lungs. I then started pushing for another abdominal drain.

Sure enough I was invited in to the day unit the following week for another drain. First came a blood test to ensure platelets were high enough, which they were. So the drain was able to go ahead. The test showed that the hemogloblin was too low, and so I asked for a blood transfusion as well. In fact I had to beg for it because this was not considered necessary but I realised that the symptoms of the previous week were all related. So in the same day I had a drain of 8.5 litres, a unit of blood and was home by tea time. It was an incredibly efficient system and I was looked after unbelievably well. They were so kind and I was looked after on the unit magnificently. I cannot speak higher of the day unit.

On the way to the hospital early that morning I really struggled to get in to the car. It was painful, traumatic, and difficult. I was breathless and we all found it something of a challenge. In fact when when we got home my Dad stated that we weren’t doing that again. I thought he meant that he needed some time to get over it. But in fact he is true to his word and the next day started looking for options that would make my life easier. We discovered Wheelchair Access Vehicles that you can can drive a wheel chair in to the back of and sit comfortably in the back whilst you go for a journey. After a couple of phone calls we found a dealer in Weston Super Mare that had a vehicle in stock. Sure enough a week or so later, my sister and he headed off to collect the car – this is a 7 hour round journey. They returned with a vehicle I can actually walk in and then sit in in my wheel chair and then be wheeled out of. I’ve written before about my incredible family. This is utter proof, were it needed, that they are incredibly kind and generous people who right now are putting me before themselves. I could not be more grateful.

The new car has allowed me to really change how I do things. I have been out and about on little trips and been to the beach far more that I might have previously. And we all know how much I love the beach.

A couple of weeks later I ordered a mobility scooter which may be the best thing I ever purchased. I bought one that is entirely fun and I absolutely bloody love it. Again it means I can get out and about much easier and move around. I don’t think I had realised how hard this had become. I can go up and down the street, even as far as the quay and the seaside and around the garden. It’s super zoomy and brings me a whole heap of joy.

I have had various visitors, including another long trip from my best girls. My Uncle and Aunt have been to visit as well as local pals. My sister’s girlfriend has been to stay for a distanced visit and her beautiful dog made friends with Thomas of Goswell. It was so great to see them all. I’m really worried the covid distanced visits will have to come to a halt some time soon.

In the last few minutes I have opened another parcel that left me in floods of tears. I can not get over people’s kindness and generosity. It floors me when what are sometimes complete strangers show their support.

Slowly but surely the ascites are worsening, nausea/vomiting and pain are increasing. I have long stopped caring too much about how much I look, but I do look a bit like I’m gestating a teenage elephant. As well as increasing medication I am booked in to have a permanent drain fitted to my abdomen next week.

It has taken me an inordinate amount of time to write this blog. I think my concentration is deteriorating as well as my need to sleep increasing. I hope you can bear with me if I start not to make too much sense from this point forward.

Is it time to start talking about Autumn and are the winds of change starting to blow? If it’s OK I’m going to hang on to summer for a tiny bit longer.

Sending love. Feel your boobs and bits.

Big love, AG xx

JEWEL / GRATEFUL

This is a great song and I recommend you have a listen to the artist if you can x

When everything’s wrong
When I can’t find my song
When darkness is all I see
There is a remedyIt’s all the little things that make the world go ’round
It’s all the little things that almost powerful
There’s no politician, no sky too dark
No one, no one can take the love from my heartThe sun gonna shine
And in this heart of mine
The sun gonna shine
And in this heart of mine
The sun gonna shine, ooh, ooh, it’s true
‘Cause I can always be gratefulWhen the loudest sound
Is your own life crashing down
And when your friends, when your friends, they don’t come around
There’s one true thing I’ve foundIt’s all the little things, the bells that ring
The green, green grass and the birds that sing
I’m gonna choose the bright side to see
And no one, no one, no one can…

When I see we made it through another day

 

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It feels like ages since I last wrote but is in fact only 3 weeks. Again time is being weird and those three weeks feel both like 3 minutes and 3 years.  There has been plenty of adjusting to the “new normal” and in doing so time keeps ticking along. It feels like quite a lot is happening but I suspect a casual observer would think not very much is happening at all.

Some weeks ago I gave up trying to get up the stairs at the end of the day to make it to my own bedroom.  I was just too exhausted and it was not helping my mood, at all, to stress myself out so much at the end of the day. I had a hospital bed installed in the dining room and it makes getting in and out of bed, and getting remotely comfortable to sleep, considerably  easier. I’m not thrilled at the step back from normal and it feels a bit like another defeat on the slippery slope.  But I am definitely at the stage of trying to make everything as easy as possible and of putting comfort before everything else. Although not easy, I still manage a flight of stairs every time I go outside and I still go upstairs to shower. This might sound like small achievements, but I dread the day I can’t do it, so for now it’s really important, for my mental well being as much as anything.  I’m not thrilled that I can’t just get up and down stairs as a matter of course.

During the last blog, I mentioned that I did not wish to repeat the stay at hospital. As is so often the way, I didn’t get that wish.  I spent a couple of days in considerable discomfort with increasing swelling and pain across my abdomen.  I got to the point where I couldn’t really put up with it and the swearing reached a whole new level.  I contacted the hospital team and they suggested I come in to be assessed for a drain.  The problem with the drain is that whilst it will help with the fluid retention, it comes with a certain amount of risk.  Firstly, for me, because my blood counts are not great, any hole created in my body is of course a risk of infection that I can’t fight off.  The second one being that my low platelets mean that my body isn’t healing very well.  So if a hole is created then it can’t easily heal over.

I went in to the hospital early on a Thursday to have a blood test. I was admitted to the day treatment unit. My consultant (who is proving to be amazing) announced that if the platelets were over 50 I would be allowed the tunnel drain.  This is a drain that is left in and can be emptied from home. If the platelets were under 50 he would have to come up with plan B.  My sister came with me that morning and we worked on the basis that she would stay with me until somebody asked her to leave.  She pushed me about the hospital in a wheelchair and we caused a little bit of chaos.  Owing to my need to be isolated we were shut in a what appeared to be a store cupboard full of old chairs and bed tables.  She very quickly had a tidy up and decontaminated everything necessary.  She fashioned a foot rest out of an old rusty zimmer frame.  It was all very odd.  Eventually, after I explained that I couldn’t really sit up for any period of time, I was allowed to lie in a bed and was given some more yummy hospital soup.

Some time later the medical team returned to let me know that the platelets were 42 and therefore had not hit the threshold. As the Consultant had witnessed the extent of my discomfort and breathlessness, he agreed to go ahead with a basic drain.  This is inserted, the fluid drained and then the drain is removed immediately after.  The catch was, for him to agree to this, I had to agree to be admitted back to the ward so that I could have some more platelet and plasma transfusions prior to the draining.  He also wanted to put me back on IV diuretics for as long as possible to try to reduce the fluid accumulated elsewhere.  Of course I agreed. Within a few hours I found myself being wheeled back to the ward I had spent 3 weeks in and back in the side room next to the room I had spent all those hours in.  I was told I would be treated on Friday and that I would need to recover over the weekend, then depending on how that all went I would be released on Monday. A morning hospital appointment quickly became a 4 night stay.

The good news was that this time I was allowed one visitor for 15 minutes each day.  This made a huge difference and I was able to see a member of the GozFam for a little while before and in to the weekend.

Once back in my side room, I was fitted with another canular and the IV treatments began.  On Friday morning I had multiple transfusions and then on Friday afternoon I was scanned to see where the worst of the ascites (pockets of fluid) were sitting.  This showed that my lower abdomen had a large contained pocket and so this became the target.  Late afternoon the drain was inserted with the use of some local anaesthetic which was very painful initially.  Then the fluid just started pouring out.  There is really no better way to describe it.  My sister happened to be there for part of this process and we were both absolutely dumbfounded by the speed and volume of liquid that came out.  In the end, they drained eight and a half litres.  Try to imagine that. It is a lot of fluid! Considering where it was sitting, and given that that was not all of it, there is still plenty there, it is hardly surprising that it was, and remains, unbearably uncomfortable.

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I recovered fairly quickly and was able to come home the following Monday.  It was a great week for visitors. Lots of people drove lots of miles to pop in and see me.  Visiting in the Covid world is a real problem and feels so very unfair. Unfair for me but also for anyone who makes is this far to west wales and is then only aloud to sit on the patio and have a distance cup of tea.  It is of course better than nothing and I am so glad to see these friendly faces.

Living on a ferry port offers up occasional advantages and last week my cousin and his girlfriend called in on their way over from Ireland.  We had a lovely evening eating curry on the patio warmed by the late August evening but mostly by the essential open fire and piles of logs we had burning.  My best girls were also here that week to help to keep me entertained.  Despite these increasingly challenging times and my apparently ever growing list of problems, they always manage to distract me and keep me laughing.

 

 

Since returning from hospital the second time, I am focusing on finding alternative ways to combat the water retention and more specifically the discomfort it leaves me with. In addition to the distanced reiki, I am now also getting acupuncture and massage for drainage. The massage has certainly had an immediate impact and straight after I can feel that my legs feel lighter and less full.  My toes also look slightly less like Miss Piggy’s.

I intend to continue pushing ahead with the things that make me feel good and there are still plenty of these. I’m trying really hard not to focus on the things that I can’t do and places I can’t go.  My world may have become smaller, but it is no less rich and there is no less love.

Feel your boobs and bits!

Big Love, AG xx

 


Sunrise : Norah Jones/Lee Alexander

Sunrise, sunrise
Looks like mornin’ in your eyes
But the clock’s held 9:15 for hours
Sunrise, sunrise
Couldn’t tempt us if it tried
‘Cause the afternoon’s already come and gone
And I said
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Surprise, surprise
Couldn’t find it in your eyes
But I’m sure it’s written all over my face
Surprise, surprise
Never something I could hide
When I see we made it through another day
And I said
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Now the night
Will throw its cover down
On me again
Ooh, and if I’m right
It’s the only way
To bring me back
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Hoo, ooh, yeah
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you

Some days are diamonds, some days are rocks

 

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Two weeks ago today, after a week of “maybe this week, maybe tomorrow, maybe not before the weekend” I was finally allowed home from the hospital.  After 3 weeks, of only leaving a small room for the occasional scan or test.  It felt so good to be out in the big wide world. Better yet was seeing my family and getting some of the very best hugs known to man. There were plenty of tears.  It was as hard for them worrying about me  being by myself in a hospital as it was for me being woken up every two hours and eating mushy food, not being able to shower, etc etc.  It’s a period of time I care not to repeat.

I was sent home with a bucket full of painkillers and diuretics, lotions, potions and told to get on with it. Before I left I was already referred to the local hospice and had been registered with the district nurses at my local medical centre and had already met a number of the palliative care team from the hospital.  Between them they will co-ordinate and support everything that happens from here on.  I have been enormously impressed by all of them as individuals but also by the overall level of care available to support end of life patients and their families.  I guess it’s one of those things you never wanted to know.

Physically the most difficult thing I’m currently dealing with is the water retention.  After a week of IV diuretics and now two weeks on a different tablet medication at home, nothing very much has improved.  I still have a water baby in my abdomen as well as completely swollen legs from toes to hip to ribs.  It’s hard to explain the level of discomfort this brings. I can barely move, can’t bend my legs and the sense of pressure is almost unbearable.  This is particularly irritating, because it’s impairing my ability to move about and be mobile.  I don’t really want to go up and down stairs because it’s such an ordeal. It feels like a very unnecessary addition to an already shitty shit storm.  I feel like the rest would be a great deal easier to handle if a round trip to the toilet in the dead of night wasn’t a good half hour of misery.  It has caused me to swear more at inanimate objects than anything else in my preceding 47 years. My family are occasionally shocked by my ability to shout rude words very loudly.  Mostly not at them but I’m afraid it has got the better of me from time to time and I definitely have more than my average share of grumps.  Eventually, I find the funny side and somewhere between crying at three o’clock in the morning I find myself laughing at myself for hollering obscenities in to the darkness.

My full time care team of GozFam are of course going above and beyond to take very good care of me.  It’s been a learning curve for us all but we are starting to settle in to a rhythm now.  I am being well and truly spoiled but they are also allowing me to find the balance of making sure I continue to do as much for myself as possible. Which is important. No request is too much, and my weird appetite and request for strange off menu items seem to not cause too many problems. My Pa has lent me his croc sandals as they are the only thing that fit on my fat feet.  Bad times.

My sister has done the most incredible thing and given up all her jobs and moved to Wales indefinitely.  As I write that, I still can’t get over what an incredible gesture of selflessness that is.  It means we will be able to spend every single day together for whatever time there is left.  Grateful does not really cover it, but to say I am lucky to have such an amazing sister is a vast understatement.  It may also surprise those of you who know her personally, that she has very quickly adapted to being the most incredible carer.  I have had to ask her to do things for me in the last 2 weeks that no sister should ever have to see or do.  She hasn’t flinched once.  At least not in front of me. She comes to see me at 8 o’clock every morning and we hug each other so tightly. I’ve said it before and I will say it again, I am blessed.

The only plan I have for the time being is taking each day as it comes. Some are good, and some are not. I am trying to make sure that I find some time to do things that make me happy every day.  This might be looking at blue skies and trees.  It might be reading a good book. Chatting to a friend on the phone. We did a jigsaw! For my birthday I received an incredible lego set, which I have started on, and frankly, may take me some time.  I am doing weekly distanced reiki.

 

My best girls came to visit.  It was so lovely to see them for a few days of almost normality.  It was just brilliant to see them. To say I miss them is the greatest understatement.  That I am so very far away from all my friends is not a helpful addition to the mix and that’s before we build in the necessary Covid restrictions.  There are more visits in the planning and a few distanced waves in the garden from a growing list of other friends, so I have much to look forward to.

In the past few weeks I have made it out of the house only once.  This involved a short trip in the car to the end of the road and then I was pushed home in my new wheelchair.  The advantage of living on the coast is that the end of the road is the sea and in this case, a beautiful quay.  What a treat it was to spend a little time in the sea air and see the blues and greens.

I have been overwhelmed again by people’s generosity.  The doorstep deliveries have been coming thick and fast and we have all been able to enjoy everything from hampers of foods to cakes, to flowers, to hot chocolate, to biscuits to teas… honestly the list goes on.  I have never taken any of this for granted and it blows me away every time something else arrives.  Sometimes from unexpected sources, old friends who I haven’t seen for many, many moons, old colleagues, old family pals, and most recently from the first boy I ever kissed.  I don’t know what I did to deserve to be surrounded by such kind, thoughtful and generous people.

The other day the blog reached 25,000 views.  This is staggering and so far beyond what I ever expected that I don’t really know what to say about it.  Thank you for being here and please continue to share it and spread the word.

Please, please, please feel your boobs and bits then turn your face to the sun and send me some positive vibes.

‘Til next time.

Big love, AG xx


I have loved Glen Cambell’s album “Meet” for years, but this song “Walls” suddenly has become so meaningful. Please give it a listen:

Walls : Petty Thomas Earl

Some days are diamonds
Some days are rocks
Some doors are open
Some roads are blocked

Sundown’s are golden
Then fade away
If I ever do nothing
I’ll get you back some day

‘Cause you got a heart so big
It could crush this town
And I can’t hold on forever
Even walls fall down

All around your island
There’s a barricade
It keeps out the danger
It holds in the pain

Sometimes you’re happy
And sometimes you cry
Half of me is ocean
Half of me is sky

But you got a heart so big
It could crush this town
And I can’t hold on forever
Even walls fall down

Somethings are over
Somethings go on
Part of me you carry
Part of me is gone

And you got a heart so big
It could crush this town
And I can’t hold on forever
Even walls fall down

You got a heart so big
It could crush this town
And I can’t hold on forever
Even walls fall down, they fall down

The one I didn’t want to write

For reasons that I hope will become clear, this will be a short post.

There have been a lot of developments since last time I wrote, but I’m not sure there is really very much to say about it. We shall see.

I went ahead with the new chemo as planned nearly 4 weeks ago now. I used the cold cap which meant it was a long, drawn out and painful process, but otherwise straightforward. The cold cap has not become any less difficult to bear since I last used it.

I set off for home and felt absolutely fine. My bags were packed and the next day one of my very best girls drove me over the bridge to Wales where I swapped to my Dad’s car for the second half of the journey to Welsh home. I felt really good, all things considered.

My sister came the next day, as we began our week together to celebrate my birthday. Before we got to the weekend, things started to deteriorate. I started to develop an ulcerated mouth and was in a lot of pain. I called the cancer centre a couple of times for advice, and eventually was prescribed some antibiotics from the local GP.

The next day, I woke feeling really terrible and suspected I was in trouble. I spent a couple of hours on and off the phone to 111 but later on Saturday found myself on the way to A&E at the local hospital. I was admitted and as I write, am still here in hospital for, approaching 3 weeks.

A lot has happened. There have been multiple tests, scans, blood screens, monitoring etc etc . In summary, the chemo caused my blood counts to drop far too low and I developed a serious infection. Neutropenic sepsis as well as a bacterial infection. My white blood cell count was so low the neutrophils were registering zero for a week. The cause and site of the infection is still not clear, but there is also evidence of chest infection/pneumonia. My mouth was so bad I could barely speak. It was traumatic to try to drink water and I didn’t eat anything for a week.

I was treated with large doses of 2 different IV anti biotics as well as IV fluids and pain relief. Eventually the blood counts started to become more stable and the infection markers started to drop.

In amongst the cannulas failing, the inability to eat and drink and fear that comes when your body is completely out of control, it has been quite the most terrifying of weeks. We are just about on top of the pain management, but that of course comes with its own set of side effects to manage. That has been about as bad as it sounds. I spent my birthday in hospital. All my hair has fallen again.During this I have been by myself in an isolated room with no visitors permitted due to Covid.

There have been occasional highlights, GozFam have been able to wave at my window from the car park below, and it’s been a total relief to see them not via a screen. I was also lucky to get a side room with a view over The Pembrokeshire countryside.

Currently the issues remain that my platelets have not risen Enough and are only just stabilising, but at too low a level. I have had 5 plasma transfusions, all of which have helped short term, but not given a lasting solution.

The next big area of concern is that once I started hydrating, I started retaining all the fluid that had gone in. I am puffed up and swollen from my toes, up my legs and in to the abdomen. It makes for a very uncomfortable existence and it’s really difficult to just move about.

The third and final straw came, when it dawned that whilst they had been successful in treating the infection and the bloods were largely improving, something else was impeding the recovery. That something else, is of course further cancer spread. The disease has spread to involve ovaries and parts of the abdomen. This goes some way to explain the pain but also tells us that I won’t recover further from this stage.

I spoke to The Prof himself at the beginning of the week, and with the information he now has from the hospital, we agreed we are at the end of the line in terms of cancer treatment. My body can no longer tolerate the stress and strain caused by chemo. As I have written before, there were no alternatives once this treatment failed. Seemingly overnight, we have got to the point of palliative care, for that is all that remains.

I will be discharged to the family home in Wales, for the time being, under the care of the palliative team, local hospice team and district nurses. I am not thinking beyond that in terms of plans and expectations. If ever there was a time to live in the present, it is now. I am drawing on all the lessons I have learned over the last three and a half years to stay calm and take each day as it comes.

I have been cared for brilliantly by the nurses and care team at the hospital, but I am really looking forward to not being in a hospital environment and not using a commode for the first time in three weeks. GozFam are desperate to get me home and look after me themselves. I can’t wait to demonstrate how really annoyingly needy I can be.

I hope now you have the update you can understand why there isn’t really very much to say.

Thank you doesn’t really cover how much I appreciate all the support I have received over the last weeks, and I know I can continue to rely on over the period to come.

before hospital, there was this…
GozFam drive by x

With love, light and a hint of desperation I beg you to check your boobs and bits. Today. No excuses.

Huge love, AG xx

If these are life’s lessons, she’ll take this test. She needs wide open spaces…

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Friday night quiz: Midsummer

I find myself breaking with tradition again and not writing in accordance with my three weekly schedule.  I started writing a blog this morning and then realised that it wasn’t due, and then figured, if I felt the need to write, then so be it. It has been only two weeks since my last blog, but it seems quite a lot has happened, so here I am.

I wrote last time about the results of the previous MRI and how devastating it was that the disease was progressing.  It really seemed to touch a nerve and I received a great deal of messages from people showing me their support and asking me not to give up.  I can assure everybody that I don’t plan to give up.  But that is getting a little bit harder every day. I wonder whether my determination to live well with cancer, and focusing on that in these posts, has given people a little more optimism than I intended.

Thank you so much to everybody that reached out to me in the last two weeks to check up on me, and also my family.  Please know that I am enormously grateful. It’s been quite overwhelming the number of questions and contacts from friends old and new, so apologies for those days when I don’t have the energy to respond to everybody.

We are approaching the summer solstice this weekend and these events always make me feel the ticking of the clock.  Time continues to march ahead. We are half way through the year and it feels like much is changing.

Last time I wrote, I was in the midst of attempting to control the pain through various means of pain relief.  I have actually slightly lost track of how many different painkillers I have tried.  Doses and regimes have been adjusted to find a balance between not making me suffer the side effects too badly and actually having some impact.  I have been ridiculously naive to how difficult this is.   There have been quite a few sleepless nights and a lot of vomiting. I can’t recommend it. I am now on paracetamol, naproxen and oxypro with occasional sips of oxycodone.  The balance is not quite there yet, but it’s better.  I have also treated myself to a TENS machine so when all else fails, I plug myself in and get zapped.  I’m not fully understanding the technology, it has something to do with jangling the pain pathways so they don’t reach your brain. It seems to give me some relief, so I don’t really care how it does it.

I started the radiotherapy to pelvis and lumbar spine last week. I had 10 sessions over 5 days, finishing middle of this week.  I was somewhat blasé about this, as I had done so much before, but it took me a bit by surprise. An hour after the first session I started violently vomitting and there has only been occasional respite from this since.  It seems the radiotherapy has clipped my gastric tract somewhere along the way and it’s causing a great deal of sensitity to food. Well anything I consume, which obviously makes digesting pain killers all the more difficult.  Otherwise, the sessions went well.  The treatment itself is always short and uneventful.  I am looked after so wonderfully by the team at the radiotherapy centre.

The scan picture here shows how the radiotherapy is planned and the area of spine and pelvis these treatments were targeting.

Half way through the radiotherapy I went to discuss my decision about chemotherapy with the chemo nurses.  We talked about the risks, and side effects and what the cycles of the new proposed drug would look like.  I decided, eventually, to go ahead.  If I don’t try it, the outcome is certain, if I do try it, at least I give us a chance of it having some impact. However, I will only continue if I can tolerate it to a point where I am able to maintain some quality of life. If I can’t enjoy anything and barely get out of bed, then I will stop.  We agreed that I would have a two week break to recover from the radiotherapy and then get going with the treatment in early July.

My bloods were checked that day, whilst I was at the cancer centre.  Partly because they are taken fairly routinely but also because we had talked a lot about the fatigue and nausea I was suffering. So we agreed it would be best to get checked.  The next day I was told that The Prof was going to call me.  Immediately the alarm bells started ringing because this is not a man who calls me to talk about the weather.  The blood showed that some of the markers for my liver function are seriously bad and have deteriorated rapidly. In some ways this shouldn’t be surprising, it’s a long time since February and that was when there was last some stability in the tumours.  He was aware that I had planned to take a two week break between ending radio and starting chemo.  He also knew that I planned to use this window to spend some more time in Wales with my family.  He explained to me that if I wait two weeks to start the chemo it might be too late. My liver has to be functioning to a certain point for him to agree to administer the chemo.  Initially we went around in a few circles with him trying to tell me it was important to spend time with my family whilst I tackled the concept that if I took that time, it could jeopardise my treatment altogether.  We agreed it was probably possible to do both. This will mean that there will be no respite between radio and chemo and I will start a new chemo on Monday.  I will be starting Taxol, which is  a lower dose drug that is administered every week.  As the dose is lower, my chances of tolerating it are improved.  However, the list of possible side effects is about the same; hair, nausea, fatigue, neutropenia, low haemoglobin, allergic reaction, neuropathy… and so on.  As always, until I start there is no knowing what effect it will have. So on Monday I will be back at the cancer centre beginning the new treatment, this will mean cold-cap, sedatives lots and lots of peripheral medication which includes the dreaded steroids. I have begged and pleaded to avoid the dexamethasone (sound familiar?) but due to the risk of anaphylactic shock with this particular chemo, I am not allowed.

As always starting a new treatment comes with a lot of trepidation about how it will make me feel and what it will do. It must though, come with some optimism and that greatest healer of all; hope.

My body will have no time to recover from the radiotherapy before I start.  So far the pain, vomiting and exhaustion have continued.  Right now I can not really imagine how it will feel to put chemo on top of that. We shall see.  The good news though is that immediately after I will be transported by angelic chauffeurs to the homestead where I will recover and be looked after by GozFam. This time the full quota. For that, I cannot wait.

Whilst I have not had the time or energy for much else, there has been plenty to keep me distracted.

My fabulous sister dropped everything in the midst of my radiotherapy, when I was feeling particularly terrible, to come and see me in one my best girl’s gardens.  Because even when you are in this unthinkable situation, Covid guidelines must be maintained.  I haven’t seen my sis since early March and it has been really, really, difficult, like it is for so many to be separated during these last few months.  No hugs of course, but my goodness it was good to see her. Thank you SP.

I also wrote another article about treatment during Covid for a secondary cancer charity, please take a look at their site here

Very excitingly, just after the last blog post the views went over 20,000.  Thank you for continuing to help me spread the word.

I finally managed to finish planting my summer pots.

I mentioned at the beginning that the last blog seemed to trigger a lot of contact.  This has been borne out by almost daily door step deliveries.  I am a lucky girl to have so many generous and supportive people in my life. Thank you all.

Please keep your positive vibes coming over the next few weeks.  My liver and I need all the help we can get.

Stay safe. Feel your boobs and bits.

Big Love, AG xx


Wide Open Spaces  :  Dixie Chicks (Susan Gibson)

Who doesn’t know what I’m talking about
Who’s never left home, who’s never struck out
To find a dream and a life of their own
A place in the clouds, a foundation of stone
Many precede and many will follow
A young girl’s dreams no longer hollow
It takes the shape of a place out west
But what it holds for her, she hasn’t yet guessed
She needs wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She traveled this road as a child
Wide eyed and grinning, she never tired
But now she won’t be coming back with the rest
If these are life’s lessons, she’ll take this test
She needs wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She knows the high stakes
As her folks drive away, her dad yells, “Check the oil!”
Mom stares out the window and says, “I’m leaving my girl”
She said, “It didn’t seem like that long ago”
When she stood there and let her own folks know
She needed wide open spaces
Room to make her big mistakes
She needs new faces
She knows the high stakes
She knows the high stakes
She knows the highest stakes

 

 

 

 

 

 

When “happily ever after” fails and we’ve been poisoned by these fairy tales

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Audio version here: audio

I am usually quite particular about sitting down to write this blog every 3 weeks. The eagle eyed amongst you may realise that it has been 4 weeks since I last wrote. It would seem a bit odd, during lockdown, to claim that I was too busy. Quite honestly, last week was pretty full on, and in the end I allowed myself a week off. I never want to feel like I’m rushing my writing just for the sake of hitting a completely made up in my own head deadline. That would seem to be somewhat contrary to the point.

I have been thinking a lot these last few weeks about uncertainty. It’s a word that seems to have been used frequently, during these “times of uncertainty” in a global pandemic. For control freaks like me, these weird times are testing on so many levels. There are so many questions that we don’t know the answer to. When will I next be able to go to a shop? When can I next go for a glass of wine with a friend? When will I next let somebody through my front door and have a natter over a cup of tea. When can I next go for a weekend away or better yet travel farther away. I am conscious that my world has become relatively small during cancer treatment and for others of course there are bigger and more stressful questions. Work and the financial impact of the crisis. Delays to medical treatment. Schools. Haircuts! Far worse, people we care about becoming ill. Will we get ill? Worrying about the statistics. When will the vaccine be ready? Does an antibody test actually matter? I’m really, really, worried that people are not going to their Doctors if they have concerns that could be symptoms of cancer.

Even now, it feels like we don’t know very much and I don’t blame anybody for that. We are all learning as we go along how to deal with this situation. There is no roadmap to follow.

I worry about how long it will be before I am back in the MRI and we know whether the current treatment is working. If not, will I be back on chemo, before it’s too late? What, ultimately will be the impact of having stage 4 breast cancer during a global pandemic and the resultant lockdown. The only thing I know for sure is I won’t be having my “Party To End All Parties” anytime soon.

I have worked in organisations where learning to deal with and manage in an uncertain environment is part of the status quo. I have, in the past, had to get better at making decisions when not all the information is available. Some people are more comfortable at this than others of course. I’m not naturally a fly by the seat of your pants kind of girl though. I like a plan. I like data. I like analysis and I may have mentioned, I like control. So what happens when all your usual coping mechanisms are removed? How do we make choices and decisions and plan when the parameters are completely unclear. We don’t know what normal looks like anymore and we don’t know what and when things will start to change. I’m afraid to tell you that I don’t have the answers to these questions. There are probably text books written on the subject. For those of us who live the average privileged life, not doing what we want to do when we want to do it, is not something we are remotely used to.

I do think though, that undergoing treatment and living with stage 4 cancer is not a bad training ground for that level of uncertainty. I have spent 3 years now not quite knowing what will happen next and not being able to plan for it. I have learnt to think short term and blinker myself to anything else. I think mostly now about what I am doing in any given week. Sometimes even that seems a bit tricky so I focus on one day at a time. And somehow or other, the world keeps turning.

One decision that I did make a few weeks ago, and on the advice of the cancer centre was to travel to West Wales to isolate with my parents. On the surface it might seem like an obvious choice to move from a very small flat, by myself, to the big blue skies and open spaces of the countryside. Normally, that would be a really easy decision. However, I wanted to wait for the my treatment window to open up sufficiently and for the peak to have passed. I am conscious that some might think I should not have taken the trip, and probably in some ways they are right. I am mindful that there are countless people who would make this choice if they could, we are all, in the end missing our nearest and dearest. I am conscious that a small rural population might not be overly thrilled to have a new member in their quarantine gang. I will simply say, that it was the right decision for me, and my parents, and if you still think I’m a Covidiot, then so be it. I am of course maintaining social distancing and isolation guidelines and have been welcomed so kindly to the community (from an acceptable distance).

Whilst in Wales I have been looking after some late arrival lambs and helping to hand rear a baby robin that was found wondering up the drive. We have also been enj oying some pretty spectacular weather. The blues and greens are just stunning. We celebrated VE 75 with a delightfully distanced street party and I was able to see my Mum on her birthday. These are important memories.

From a treatment perspective, not much has changed. I have moved on to the monthly cycle of hormone injections which means I only have to go to the cancer centre once a month. Hence why I was able to spend some time away from home. Once a month I get my bone strengthening injection, two hormone injections and my blood is checked. This means four needles on treatment day, which is fine, and I am a big, brave girl, but I do feel a bit like a pin cushion that day. I’m not going to pretend it doesn’t sting a bit. I will take it over chemo any day of the week though. So far, the side effects are tolerable. The night sweats are back, which is not conducive to a restful night, but I have just about got used to this after chemical menopausing for 3 years.

My biggest problem at the moment is increased pain. I don’t know if this is because of the tumours in my bones or whether it’s a side effect of the new drugs. It could also be arthritis which is increasingly evident on the MRIs. However, my lower lumbar, pelvic and hip areas are now so sore that they keep me awake. I have been prescribed pain patches which I wear for 12 hours at night. In the past I have always been a really good sleeper, and don’t do well with interrupted sleep, so anything that disrupts my slumber is a big problem. So far, I don’t think the patches are particularly effective and I remain in quite a lot of discomfort. I will continue to push for a solution and hope things improve.

Since the lockdown began I have not been to the hospice, for obvious reasons. Over the last few weeks we have started to do one to one physiotherapy sessions by zoom and we have also started a weekly zoom yoga class. Physiotherapy has been a really critical part of my wellbeing for some time now. We work together to try to build some strength in my body where it is otherwise being weakened. It’s a really fine balance between working to improve matters without me getting it wrong, overdoing it, and making matters even worse. I am so grateful to have the support of the hospice and my physiotherapist is an absolute superstar.

Apart from that, lockdown continues to be pretty uneventful. There are certain highlights that have now become the norm. We started a Friday night virtual quiz night right at the very beginning and this has become our team’s Friday night out/out in/in. Now we seem to have fancy dress every week as well as cocktail of the week. It is quite messy, but I have never had so much hysterical fun sitting on my sofa “alone”. It’s a brilliant way to connect with friends old and new, near and far. The world suddenly becomes a much smaller place with a bit of decent WiFi.

This is my 40th blog. In a month or so I hope to have 20,000 views. At the risk of sounding like a broken record, I am so grateful to have you here with me. Your support means more than you know.

Please stay safe.

Stay sane.

Feel your boobs and bits.

Big Love, AG xx


The end of the innocence : Don Henley & Bruce Hornsby

I ruddy loves this tune! Please listen to it if you don’t know it x

Remember when the days were long
And rolled beneath a deep blue sky
Didn’t have a care in the world
With mommy and daddy standing by
When “happily ever after” fails
And we’ve been poisoned by these fairy tales
The lawyers dwell on small details
Since daddy had to fly
Oh, but I know a place where we can go
Still untouched by man
We’ll sit and watch the clouds roll by
And the tall grass waves in the wind
You can lay your head back on the ground
And let your hair fall all around me
Offer up your best defense
But this is the end
This is the end of the innocence
O’ beautiful, for spacious skies
But now those skies are threatening
They’re beating plowshares into swords
For this tired old man that we elected king
Armchair warriors often fail
And they’ve been poisoned by these fairy tales
The lawyers clean up all details
Since daddy had to lie
Oh, but I know a place where we can go
And wash away this sin
We’ll sit and watch the clouds roll by
The tall grass waves in the wind
Just lay your head back on the ground
And let your hair spill all around me
Offer up your best defense
But this is the end
This is the end of the innocence
Who knows how long this will last
Now we’ve come so far, so fast
But somewhere back there in the dust
That same small town in each of us
I need to remember this
So baby, give me just one kiss
And let me take a long last look
Before we say good bye
Just lay your head back on the ground
And let your hair fall all around me
Offer up your best defense
But this is the end
This is the end of the innocence

We’ll do it all, Everything, On our own

 

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Audio version available here: I’ll read it to you!

In my last blog I felt sure that a lot might happen in the following three weeks, and that it might feel like the longest three weeks we have ever known. I’m pretty sure we can agree that quite a lot has happened in the world. I’m going to disagree with myself on the second part of that prediction though, it feels like time is flying. I’m sure this isn’t the same for everybody and there are many people really feeling the constraints of the isolation.  Whether you are locked down alone or locked down with others, our world’s have turned upside down in so many ways.  Nothing we ever expected or planned for.

I know that many people are struggling with the lack of social contact, be it through work or any general human interaction.  The extroverts among you are feeling very hard done by.  In most situations, it doesn’t pay to be an introvert, but let me tell you, getting energy from peace and quiet is playing to my strengths right now. I like a hug more than most, and believe me, the first person that is allowed near enough for me to get my arms around, won’t be let go for quite some time.  I am however, quite good at being alone.  I know that rings alarm bells for some people and it seems almost unimaginable.  The view seems to be that there must be something wrong with anyone who is OK with solitude, but please believe me when I repeat, I am quite good at being alone.  I love my time with family, look forward to weekends with friends like my life depends on it. I’ve probably spent more time out for lunch, catching up in the pub, out for dinner than the average girl.  I used to get such reward from working in teams and spending multiple hours a week in offices surrounded by hundreds of people.  The joy of being an introvert is knowing you can go home and close the door.

I don’t need to be with people to feel part of a community.  I know my friends and family are around me, I feel their presence all the time. I have long been a fan of social media and could not care less about which platforms are considered “cool” at any particular point in time.  I don’t subscribe to the belief that we have to have thousands of friends or followers or likes to be validated and neither do I care for the mean, the trite or the fake.  I keep my small group of online friends close and I don’t know what I would do without them right now.

Part of  that community has become this blog. Often it feels like a safety blanket that I can pull up on a chilly evening.  Other times I suspect I am shouting in to a noisy storm and can’t be heard.  Some times I find it embarrassing and remember that I’m not generally comfortable talking about myself and this blog feels like I’m asking everybody to focus their attention on me, me, me.  But it is always, always, something I am so glad to be doing.  I’m always really pleased when I get nice comments and positive feedback but largely I just am so grateful for the space it gives me to reflect and gather my thoughts.  Last week marked the second year anniversary of when I started writing.  It was quite soon after the secondary diagnosis.  I think my blog has become my calm and quiet space that allows me to put in to words everything that it is almost impossible to say.  This is the 39th post that I have written. That’s over 50,000 words (sorry!) and over 18,000 views. This gives me life.  My objective at the start was to help people understand a bit more about cancer and to try to raise awareness and remind people to be body vigilant.  I hope I have achieved that to some extent, but if the value in this is largely the joy and purpose it gives me writing it, then I am more than happy with that.

I don’t underestimate how difficult it is to read sometimes.  I am regularly told that I make people laugh but mostly cry. It is never my intention to focus on the sad but let’s be honest, it’s impossible to avoid.  Thank you for being here.

I never really get bored and I don’t get lonely. There is a difference between alone and lonely. That doesn’t mean to say I don’t miss people, because of course I do.  Easter Sunday was a real struggle for me. I woke up and felt lonely. I really felt the fact that I had never spent an Easter away from my family.  I felt, briefly, like this was a whole heap of unfair.  I felt really sad for the me that wasn’t having the Easter I hoped to have. It felt like a cruel injustice that after everything, I had to spend a high day and holiday, by myself.  Who knows whether Easter 2021 will be a thing for me, and if it isn’t, what a cruel and terrible way for my family and me to spend Easter 2020.

In terms of treatment, last month, my chemotherapy was put on hold and I was sent to Mount Vernon for an MRI.  The original plan was that this would give The Prof the information he needed to make the decision about whether to continue with the chemo break or carry on with treatment.

In the end, as is so often the way, this decision was taken out of our hands by my cancer.  After the MRI I was summoned in to see The Prof to be told by the great man himself, that the chemo had stopped working anyway. There is progression in the liver tumours and there is, therefore, no point continuing with the treatment I was on. If the planet was somewhat differently aligned, The Prof would have recommended switching me to a different chemo, but we don’t want to take the risk of poor immunity in a world full of covid.   Instead I have started a hormonal treatment, that I haven’t tried before.  It will, if it works, stop my tumours from being able to feed on the oestrogen that supplies my cancer. It is delivered by injection, in to the buttocks.  One each side. Nothing if not glamorous.  The drug is Faslodex and you can read more about it here: Faslodex/Fulvestrant

Trips to the hospitals require protection! Covid chic:

Once I get through the ramp up dose, which is every 2 weeks for 3 doses, it is once a month, and will be delivered at the cancer centre.  I will have a few cycles before heading back to the MRI to see what impact it is having. The silver lining, if I look really hard to find it, is that for the time being, I don’t have to have chemo. So I don’t feel sick, I don’t have to eat green soup, I don’t have to go to bed for 3 days, I don’t find it hard to breathe and my blood counts should improve.  If nothing else, a chemo break will allow my bone marrow some respite and time to recover and get back to doing what it should be doing and giving me plenty of healthy blood cells.

It’s always devastating when a treatment stops working, but this is the very essence of stage 4 cancer.  At some point the cancer works it’s way around the treatment and you move on to the next, until the options run out.  Looking back at my treatment path, 6 months is usually about the time that the drugs stop working, so we probably should not have been surprised.  Normally when this happens, everybody rallies around, I get lots of visits and many, many hugs.  So it has felt much like a double whammy to have to deal with the fall out of a failed treatment without a shoulder to cry on.

Nobody would choose to go on this journey at any time, but adding isolation and the threat of a terrible virus on top of cancer, is, I think, about as bad as it gets.

I don’t know whether my ears are particularly alert to the topic, but it seems like cancer treatment during the Covid crisis has had a lot of publicity in the last weeks.  I wrote last time about how this feels very much like a rock and a hard place.  We can’t risk the treatment that puts us at greater risk of the virus, but what is the risk of not having treatment and the cancer progressing?  For many cancer patients this is the absolute nightmare. Layer upon layer of doubt and anxiety. The concerns and worry that we just about acclimatise to in our normal treatment paths, now multiplying ten fold.   It doesn’t help when documents are published giving medical practitioners guidelines that put patients with aggressive secondary cancers at the bottom of the list to be put on a ventilator, should a prioritisation need to be made. More reasons, should they be required, why I must absolutely not get the rona.

On the topic of treatment during the crisis, I nominated myself to write a guest blog for one of the breast cancer websites. You can find it here if you would like to take a look: Guest Blog

It’s been a tricky couple of weeks. One treatment failing and moving on to start another one amongst the social distancing and isolation is really the perfect shit storm.  I am, however, doing everything I can to stay sane and positive.

The sunshine has really helped so much over the last few weeks. I have been able to get out for regular walks.  My balcony pots continue to give me a lot of pleasure.  My hair has realised it’s Spring and is joining in with some regrowth.  I even have a touch of an April tan.  I have been really enjoying the new world of Zoom meetings, Houseparty, video calls and have had some hilarious evenings catching up with friends from all around the world.

 

I have also been truly spoiled with some very generous doorstep deliveries.  My nearest and dearest are regularly sending or bringing me parcels and leaving them outside my door.  This has ranged from flowers to chocolate and grocery shopping but has also included plates of food for which I am enormously grateful.  I have not been able to get used to not being allowed to do my own shopping and still cannot get a supermarket delivery.  I have found it difficult to adjust to having no option but to rely on other people.  It really doesn’t come naturally to me and I feel terrible every time I ask for help.  I will leave the psychologists amongst you to figure that one out.  I hope I am starting to get a bit better at it, but I have been a fiercely independent single girl for as long as I can remember.  There is a relevant phrase about old dogs and new tricks which comes to mind.

All the time I am reminded that this will not last forever.  Things are difficult for everybody right now, but we are in it together and with a following wind, we will be out and about soon and before we know it, this will start to feel like a bad dream.

If it’s OK for The Queen to quote Vera Lynn, then I hope it’s OK for me to quote Her Madge…. “We should take comfort that, while we may have more still to endure, better days will return: we will be with our friends again; we will be with our families again; we will meet again.”

Three weeks then.  We can do this…

Next time you are at a loss for what to do, feel your boobs and bits.

Big Love, AG xx


Chasing Cars: Snow Patrol

We’ll do it all
Everything
On our own
We don’t need
Anything
Or anyone
If I lay here
If I just lay here
Would you lie with me and just forget the world?
I don’t quite know
How to say
How I feel
Those three words
Are said too much
They’re not enough
If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life
Let’s waste time
Chasing cars
Around our heads
I need your grace
To remind me
To find my own
If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life
All that I am
All that I ever was
Is here in your perfect eyes, they’re all I can see
I don’t know where
Confused about how as well
Just know that these things will never change for us at all
If I lay here
If I just lay here
Would you lie with me and just forget the world?

 

 

 

 

 

Too many walls have been built in between us. Too many dreams have been shattered around us. If I seem to give up they’d still never win. Deep in my heart I know the strength is within.

Audio version of this blog: Audio version

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Before I write a blog I always read the previous one first so that I can remind myself what was going on.  I write every three weeks, so you might imagine it wouldn’t be that difficult to remember.  Sometimes three weeks feels like 3 minutes and other times, more like 3 years.  Sometimes when I read back to the last entry it feels like I’m reading something from a different era and other times I can’t believe it was three weeks ago because it feels like yesterday.  Time is a funny old thing. I usually sit down to write and worry that not very much has happened, but normally, once I start, it feels like a lot has happened, so I need to remind myself where I left off last time. That’s a really long way round of sharing that I just realised in my last blog I wrote “I am not overly concerned about Corona”. Which in hindsight is probably the most ridiculous thing ever written.

In the space of three weeks I have gone from mildly concerned to being told if I get it I’m done for, thanks to my chemo blasted immunity. I’m sure everybody felt the same wave that went something like; mildly interesting to this is serious, to this is inconvenient, to holy shit we are all doomed. There are still days when I find it completely unbelievable and have to control the rising panic. This is scary stuff.

Also in that time frame I have gone from thinking it’s OK to go out for occasional walks with friends to being worried about leaving the house at all.  I saw the busyness in open spaces over Mother’s Day weekend.  Every day I watch hordes of people ambling, jogging, pushing babies, walking dogs up and down the tow path – the tow path is not a wide area and these people are not protecting themselves or the vulnerable.

Having stage 4 cancer and being on chemotherapy puts me in a high risk / vulnerable category.  I am doing my best to be a responsible citizen, as well as look after myself, by trying to interpret and follow the government guidelines. Initially I thought I fell in to the shielded group and was expecting a message or letter from the government.  It never came and I assumed that this was because I had fallen down a private/NHS hole. I went back to the guidelines and it seems I don’t fit the criteria anyway.  So I am not in the group that has to stay in for 12 weeks and can only open a window.  Whilst that might sound like a good thing, it means I won’t receive the support afforded to that group. Support such as prioritised supermarket deliveries, which would be pretty handy for a single girl, living alone, germaphobe. Fortunately I have brilliant friends and neighbours who are keeping me stocked up with supplies. I’m very lucky that they are all so kind.

I feel like I am quite well placed for isolation.  The last few years has been quite a good warm up to this.  My treatment has meant I have had to practice social distancing for quite some time. I don’t underestimate though how difficult it will seem to everybody else.  It’s not unusual for me to have to spend big chunks of time by myself.  Which is fine, I am totally happy with my own company, I quite like myself, as it happens. But my God I shall miss the hugs.

My plan to keep myself sane is online yoga and pilates classes, lots of reading, listening to the radio, binge watching Netflix, playing online quizzes and games with my nearest and dearest, having lots of video calls and frankly I’m not sure when I will get time to do any housework. I bought a pom pom making kit. I will be regularly giving myself mani/pedis. I will do some more writing.  I have decluttering to do.  I also recently purchased a new piano keyboard, so I will be channelling my 10 year old self and making sure I build in time for piano practice.

There is a lot more that could be said about these current circumstances, but I know we are all a bit sick of it already.  There are far more qualified people than me to whinge about it. I will move on, but my final statement on the matter for the time being is this; when your timeline is limited the absolute last thing you would choose to do is lock yourself away from your family and your friends and stop doing all the things that you love to do that keep you sane and healthy.

Treatment wise there is little to report. I am stuck between chemo treatment 8 and 9.  I wrote last time that I had forced a longer break after 8 to ensure I could spend some time with family. I also wanted to try to get through a cycle without needing a blood transfusion, so a 4 week break between cycles is what I pushed for.  I am probably slightly psychic because my delay strategy played out well given that I was able to do what I wanted to do in March before the lock down arrived.  However, this is also a case of being careful about what you wish for. When I went back for chemo 9 my bloods were pretty good by my standards, but not good enough by anybody else’s. Whereas before I would have been treated, due to CV19 they refused to treat me because they need my white blood cell count to be considerably higher given we know it will drop off after treatment. They told me in no uncertain terms that I must not get corona. At that point they told me to go away again and come back the following week to test the blood again.  Instead, we very quickly moved to plan B. I am now going for an MRI which The Prof will review.  Based on current status of my tumours he will make the call: to treat or not to treat.  As I understand it, he will decide whether it is safe to continue with a chemo break, or whether there is no choice but to continue with the chemo, thereby putting me at risk of becoming seriously ill if I get the virus.

Who would be an oncologist having to make decisions like that at a time like this?  It takes a braver soul than mine, that’s for sure.

I have written before that The Prof offered me a chemo holiday and that I turned him down.  Maybe he also has a strange means by which he gets his own way. I was coming round to the idea of a chemo break.  This would have included travel, spending time with family and friends and I was also in the process of planning the mother of all parties.  A chemo holiday to sit in my flat by myself and worry about when I will run out of tea bags, is not my idea of a fair deal.

The good news is that because it’s now approaching six weeks since I had chemo, I feel really great.  With the sunshine this week I even have some colour in my cheeks.

One of the reasons I pushed chemo 9 out was to make sure I could spend some time with GozFam in March.  It was extremely fortuitous that we picked the last weekend that it would have been possible, before the world went mad.  We booked what now seems to have become an annual trip to Bristol. In order to play it safe, we cancelled the busy town centre hotel as well as all meals in restaurants.  Instead we booked an Airbnb, stayed in and had take-aways.  We had one treat out which was afternoon tea with my second cousin and a new member of our family. We stayed in the village of Clifton and it was truly fabulous, such a beautiful place with lots to offer.  GozFam had a very Goswellian weekend, there was cards, games, singing, dancing and laughing.  There was also an incident at the zoo, but the less said about that the better.  I look forward to going back when normality is restored.

 

I have managed a few walks in the last few weeks.  I love to see Spring appear and slowly but surely wake the planet from it’s wintery snooze. Those walks will be few and far between for the time being, but I shall get back to them as soon as I can.  In the meantime I am so lucky to have my balcony, a tiny space but I have a few pots bringing me joy.

Many weeks ago I wrote another article for Jennifer Young’s Beauty Despite Cancer website. It’s a summary of everything since I was first diagnosed, you can find it here if you would like to take a look (I didn’t choose the title!): Abigail’s article

My instinct is that a lot will happen in the next few weeks and before I write again.  It will feel like a strange and alien time, and it may be the longest three weeks we have ever known.  Please try to stay sane. Sending love, light and strength.

Above all else, do what you are told and don’t buy too much toilet roll.

Also, feel ya boobs.

Please remember it’s Save Our Soles, not Save Assholes.

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Big Love xx AG


Too Many Walls : Cathy Dennis 

Wish on a rainbow is all I can do.
Dream of the good times that we never knew.
No late nights alone in your arms.
I’ll dream on. Living in wonder, thinking of you.
Still looking for ways to uncover the truth.
You’re so young is all they can say.
They don’t know,
If I could change the way of the world I’d be your girl.
Too many walls have been built in between us.
Too many dreams have been shattered around us.
If I seem to give up they’d still never win.
Deep in my heart I know the strength is within.
Watching the others chances drift by.
They’ll never discover these feelings I hide.
Deep inside I’m falling apart.
All alone with a broken heart.
Thinking in silence is all they allow.
These words still unspoken may never be found.
All these dreams one day will be mine.
They cross my mind.
My time has yet to come. Until then.
Deep in my heart I know the strength is within.
Too many walls have been built in between us.
Too many dreams have been shattered around us.
If I seem to give up they’d still never win.
Deep in my heart I know the strength is within.
Too many walls have been built in between us.
Too many dreams have been shattered around us.
If I seem to give up they’d still never win.
Deep in my heart I know the strength is within.
Too many walls have been built in between us.
Too many dreams have been shattered around us.
If I seem to give up they’d still never win.
Deep in my heart I know the strength is within.

 

From the dark end of the street, To the bright side of the road…

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Should you prefer, the blog now has an audible version and you can listen here:

https://soundcloud.com/user-211635300/bright-side-of-the-road


HIP HIP HOORAY it’s March. I love March. It falls behind Christmas and June in my calendar top hits, so I guess that makes it my third favourite time of the year. But I still love it. It doesn’t really feel like Spring yet, and there is still a chance that winter (or storm season as it appears to be now known) could bite us in the bum, but I always feel like March is the start of the upward trajectory. It’s not quite as dark and dingy in the morning and there is a hint of a night drawing out. Between the torrential rain and the storm force winds of the last month, there are little glimmers of green appearing in my balcony pots. The bulbs I planted last year are popping up and telling me that the seasons are marching on. When I planted those bulbs I was hanging on to every hope that the chemo would work and that I would be able to see the green shoots of Spring. Hope has enormous power, and so with every peeking bulb, every tweeting bird and every ever so slightly longer day, I breathe a little sigh of relief and exhale a little longer.

Last time I wrote I had come out of chemo 7 straight in to a blood transfusion and I was due chemo 8 the following week. My parents arrived on the Sunday and we had a couple of days of doing nice things and catching up before chemo. I half expected the chemo not to go ahead as I had had such a bad reaction the previous time and the bloods were so bad, despite the dose reduction from chemo 7 onwards. I was becoming more convinced that my body was just not able to recover from chemo in 3 weeks. I spoke to a number of people about whether I was being a bit dramatic and we agreed I should go ahead with 8 and see what happened. I am not, after all, an oncologist or a medical professional. I am though, pretty sure that this body needs at least 4 weeks to recover between doses. In other words, I agreed to go ahead and do it The Profs way and if the same thing happens, then we know the answer.

There are days when I wonder whether I am being a giant wuss and if I shouldn’t just pull myself together when it comes to side effects from treatment. I know I’m far from the only person that has to suffer these drugs, but bloody hell, some of them are so awful. I don’t have any benchmark in my family or friends for how this is supposed to feel. That makes it difficult to figure out whether I am hitting a norm or actually am suffering more than most. It’s not entirely relevant because, I suppose what matters is how I feel, not everybody else. Whilst mulling this over recently I was given some interesting information by one of my chemo nurses. I will share this here because, well I found it interesting and it may help give some perspective.

Firstly; until recently, I was the person at my cancer centre suffering the worst from the specific treatment I am on. That’s quite useful to know in the sense that I now don’t feel like a girl’s blouse and have a sense that my feeling terrible is justified. I’m told another patient has now taken poll position in the lack of tolerance department and can only imagine what that must be like for her.

Secondly, two years ago I was on the targeted therapy Palbociclib. It did a really good job on my tumours for six months then suddenly stopped working. The standard dose is 125mg and most people can tolerate the drug at that dose. My bloods dropped badly on 125 so occasionally treatment was delayed but eventually by crap white cells led The Prof to drop the dose to 100mg. This is not particularly unusual and allows patients to tolerate the drug better, whilst not losing efficacy. With me, same problem, rubbish white cells continued so it was dropped again to 75, which is the lowest dose the drug was trialled on. I just about tolerated that for the period of time before it stopped being effective. I recently found out that I came up in a discussion with the pharma rep because I was the only person in the clinic’s history to have had the dose dropped so low.

I think I’m just trying to cheer myself up about my reaction to drugs. It’s really hard when the drugs are working but your body is trying to tell you to stop. I do everything I can to stay positive, to keep my wellbeing as strong as possible and to be proactive about my mental health. It’s an almighty challenge. I am not feeling sorry for myself. In fact knowing that my body is fighting back is in many ways reassuring. It’s quite good to know that the body’s reaction is entirely out of my hands and that the fact I occasionally feel really quite horrible, is not a figment of my imagination. Wouldn’t it be great though, if the treatment worked and didn’t knock me sideways in the process?

Chemo week arrived again and sure enough, the bloods were not brilliant the day before, but they were just about above the threshold, The Prof was consulted and the response was to get on with it.

This was my parent’s first experience of the chemo cycle and as with anybody who comes with me on the day, they were pleasantly surprised by how non eventful it is. The port I have implanted makes for pretty speedy and not painful (much) administering of the syringes. They were also blown away with how utterly brilliant, kind and caring the nurses are that look after me. It’s reassuring for everyone to know that I am in such careful and capable hands.

The chemo fog descended and I slept for a few days, interrupted only by vegetable soup and green tea deliveries. Before the end of the week I started to improve and we made it out for a few trips and meals before they set off back to Wales at the end of the week. The next week arrived and in my head I was waiting for the bloods to drop and to start to feel bad. I had a quick word with myself and reminded myself that I should get on with it and not expect the worst. I filled my diary up with fun stuff, booked in lunches and looked forward to a good week. The next day I went in to town to have a cuppa with a friend and half way round MnS foodhall realised I was struggling to breath. After the cuppa (because, priorities) I set off to the cancer centre with an overbearing sense of deja vu. Bloods were taken and sure enough, haemoglobin, platelets and white blood cells were all too low. I was prescribed anti-biotics to counter the risk of infection and sent home. The plan was to give it 36 hours, go back for more tests and see if there was any improvement. The next day I tried to do some ironing and nearly passed out. I had been told my platelets were low and that if I bled, I should go straight to A&E. This is such a stressful way to exist.

If you are wondering why this is such a big deal and why I keep banging on about blood counts, I will go in to a little detail here. I have stolen this from the Cancer Research UK website, where there is plenty more information: CRUK

Red cells: Chemotherapy makes the level of red blood cells fall (anaemia). Red blood cells contain haemoglobin, which carries oxygen around the body. When the level of red blood cells is low you have less oxygen going to your cells. This can make you breathless and look pale. You might need a blood transfusion if the level is very low. After a transfusion, you will be less breathless and less pale. You can also feel tired and depressed when your blood count is low and feel better once it is back to normal. The levels can rise and fall during your treatment. So it can feel like you are on an emotional and physical roller coaster.

For me, a low haemoglobin means being light headed and breathless, on exertion it can be really hard to catch my breath. I’m basically not getting enough oxygen. last week my haemoglobin was 92 and it should be between 120 and 150.

White cells: Chemotherapy drugs often stop the bone marrow from making enough white blood cells. White blood cells are part of your defence against infection. When your white blood cells are low, bacteria can quickly increase in the blood. You might not have enough white blood cells to fight the bacteria. So a minor infection can become life threatening within hours.

The shite white cells have been a problem for me from the very beginning. My bone marrow seems to be slow to recover and not forgetting that I have a lot of disease in my bones, which will be impacting the marrow’s ability to do it’s job. Typically my problem has been with low neutrophils which are just one of the types of white cells that provide immunity. Last week my neutrophils were 0.4, they should be between 2 and 7. The overall white blood cell count was 0.9 and they should be over 4.

Platelets: With a drop in platelets you might notice you: bruise more easily, have nosebleeds or have bleeding gums when you brush your teeth. This is due to a drop in the number of platelets that help clot your blood. If your platelets get very low you may have lots of tiny red spots or bruises on your arms or legs.

This is the first type of treatment that has affected my platelets. They have held their own until now. Last week they were 32 and should be between 150 and 410.

That’s probably enough science for now. Suffice to say, my blood’s reaction to chemo is not great. Or as one of the chemo nurses said to me “Abi, your blood has been compromised, very compromised Abi”.

The 36 hours passed, I felt no better but went back to the cancer centre for the blood to be tested again. The haemoglobin was very marginally improved but otherwise the levels were too low. I was booked in for my third blood transfusion the following day. I receive two units and the transfusion takes around 5 hours, so I was at the centre for around 6 hours in total. That time allowed me to stop and think a bit about the chemo again and I made the decision that I would not do the next chemo when it was planned on the third week. I have now done two cycles on a reduced dose which have left me pretty poorly and needing somebody else’s blood. It is too predictable what will happen if we keep repeating that cycle. I have taken the decision this time, without seeking permission or consulting The Prof to push back the next treatment. I’m not prepared to put myself through the inevitable outcome again. Also, it allows me to spend some time with GozFam in March, which would have otherwise been unlikely.

Following the transfusion, I took some quiet time to try to recover and protect myself from germs. I decided to self quarantine in an attempt to not go anywhere busy or anywhere where I was at risk of picking up anything nasty. So really that meant staying at home. Fortunately I am not a person who ever gets bored. There are too many books to read, programmes to watch, old and new music to listen to, puzzles to do and phone calls to be made. I am lucky enough to spend quite a lot of time flower arranging and I have also re-found my love of Lego. Before I knew it the weekend had passed and this week arrived. Whilst I am feeling stronger I still have not inconsiderable anxiety about the state of my neutrophils and therefore my immunity. I am not overly concerned about Corona, but when they talk about it being more serious for the elderly and those with existing health conditions, I know they are looking at me. It didn’t help to wake up to the news one day this week that a healthcare worker at a Hertfordshire cancer centre was one of the people identified as having the virus. This subsequently turned out to be incorrect, as a later test was negative, thankfully, but it felt like it was getting uncomfortably close to home.

For all these reasons, it has been an unusually quiet couple of weeks from a getting out and about perspective. I have though, had a lot of lovely visitors who have helped me stock the fridge as well as kept me entertained and put a smile on my face. They are very special people.

This year, again, I am a judge in the BBC Radio 2 500 words children’s story writing competition. The stories could not have arrived at a better time. It’s something I feel really privileged to do. I get the opportunity to sit in my favourite chair and read the stories of the nation’s budding authors. Be assured, it’s a really insightful pastime and I really appreciate the chance to catch a glimpse in to the minds of the little people. Who knows, will I be the first person to read the next Dickens or Austen?

I have made a few trips to the cinema and watched some really great films. The first I would recommend is Parasite, which is truly worthy of all the reviews and accolades it has received. For me the sign of a good film is that it stays with you, and I have not stopped thinking about it for about three weeks. I also went to see JoJo Rabbit. I wasn’t overly keen to see this film owing to it’s subject matter, having never been a fan of the Nazis, but I went after a few people recommended it and couldn’t be happier that I did. It’s a complex, funny, sweet, happy, tragic film with some truly brilliant performances. It ended with a quote, which I share here.

The quote is by the Austrian poet Rainer Maria Rilke:

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It’s a funny old world right now and sometimes, we just need to be reminded that nothing stays the same for long.

I might also remind you, please, to feel your boobs and bits.

Happy springing, just keep going…

Big Love, AG xx

Bright Side Of The Road : Van Morrison

From the dark end of the street
To the bright side of the road
We’ll be lovers once again
On the bright side of the road
Little darlin’, come with me
Won’t you help me share my load
From the dark end of the street
To the bright side of the road
Into this life we’re born
Baby sometimes, sometimes we don’t know why
And time seems to go by so fast
In the twinkling of an eye
Let’s enjoy it while we can (let’s enjoy it while we can)
Won’t you help me share my load (help me share my load)
From the dark end of the street
To the bright side of the road
Into this life we’re born
Baby sometimes, sometimes we don’t know why
And time seems to go by so fast
In the twinkling of an eye
Let’s enjoy it while we can (let’s enjoy it while we can)
Help me sing my song (help me…