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…

If only I don’t bend and break I’ll meet you on the other side

Audio version, available here: https://soundcloud.com/user-211635300/if-only

This coming weekend is my third canciversary and two years since we discovered that my apparently non-aggressive cancer had gone haywire and was now incurable. I am starting the fourth year of living with cancer.

I wrote last time about what those anniversaries mean to me. Now that I am staring down the barrel of that date (February 15th) I’m trying to get my mind re-focused on the “living” with cancer part of this journey and not the destination. It’s really bloody difficult. There are always things that need doing that some days just take my breath away with how awful this is. Mostly I grit my teeth and power through.

The last few weeks have been more eventful than necessary from a treatment perspective, so there has been more teeth gritting and less time to worry about the rest.

Just after my last blog, I went to see The Prof following the good results of the last MRI. I had assumed that the conversation would be about next steps, continuing with chemo etc. I had loads of questions about what we could do to improve my resilience to the treatment and not feel so terrible. I had some really helpful (and he loves this) suggestions about chemo dose reductions, cycle time extensions, increased Pelgraz injections and more regular blood checks. I had been thinking about how we can get the chemo low enough to be effective whilst not damaging my blood counts to the point where I have to be hospitalised. Instead, he offered me a chemo holiday. He reminded me that I don’t have to do the chemo at all, and given we now had achieved some stability and he had given me more time, this might be a good time to do the bucket list. I wasn’t ready for the word bucket list. I was so shocked I didn’t really know what to say. As always, he couldn’t offer any guarantees about what would happen if I had no treatment, or indeed whether the chemo would continue to work after a break. He reminded me that I didn’t want to do it in the first place and repeated back to me all the reasons that I didn’t want to do it. And for reasons that I am yet to fully understand, I turned down his offer. It’s taken such a long time to get some tumour stability that it just doesn’t feel like the right time to stop and take a break. It’s good to know though, that it’s an option.

Had I known at that point, what the last few weeks would be like, I might have made a different decision. However, as I told him then, when I agreed to do the chemo it was because I didn’t like the only alternative option, and I still don’t. So we agreed I would go on to another chemo cycle and chemo 7 was booked for the following week. I did manage to convince him to drop the dose, but he wasn’t up for my idea of giving me 4 week breaks between doses instead of 3. I will leave that for the next negotiation.

Whilst with The Prof I mentioned to him that I had been having trouble with my left knee. When I had the full body MRI the week before I asked them to look at my knee and was told that the “full body” scan actually stops above the knee, and before the elbows. I asked The Prof how we would know if there was disease in the knee or below if it wasn’t being looked at. He replied that it wouldn’t make any difference to the course of treatment and it was very unlikely that the cancer had spread that far (and therefore why would you bother). However, he agreed to refer the knee for it’s very own MRI so we could see what was going on. Sure enough he called me a week or so later on to tell me “you were right”. Not in a good way. The cancer has spread down my left leg, in to the femur, knee and beyond in to the tibia. I was referred back to my radiotherapy oncologist with the view that more radiotherapy would reduce the pain.

By the time I went back to Mount Vernon the following week, the pain had gone. At this point he had not seen the scan and I had not read the MRI report. We had a very sensible discussion about balancing the risk of treatment with the benefits and agreed to meet again the following week to review the scans. The scans show a lot of mets around the knee, but not where I was getting the pain. So, as I suspected, the pain was actually just a nuisance soft tissue injury and not caused by the mets. This was when I was told that mets below the knee are extremely rare and the reason why they don’t do a “full body” scan became obvious. I have since tried to read up about this and it’s hard to get a full picture but it looks like less than 2% of breast cancer secondaries get beyond the knee. So once again, well done me.

My personal instinct is that those mets are not new. I think they have been there all along and it’s only because we went looking for them that we found them. I was given a print out from the MRI so I can actually see the mets. It’s been quite some time since I have actually eyeballed this disease. It’s quite disconcerting. I will include the picture below, you can see (amongst the arthritis, effusion etc) the white patches in the bones above and below the knee. That’s the enemy.

One other problem with the chemo I am on is that it can damage the heart. For this reason I had an ECG and echo before I started treatment as a benchmark. Whilst I was with The Prof he reminded me that after 6 chemos I have to go back for another heart scan to check for damage. The morning of chemo 7 I set off to the hospital for the scan, which apart from being like a cross between a bear hug and being punched in the ribs, was fairly uneventful. A few days later I was called by the cardiac unit and told I had to go back. Nothing like an unexpected recall to get the ticker going. They couldn’t tell me why, so I made a nuisance of myself and eventually they put me through to somebody who told me that they hadn’t been able to get good enough images to make the assessment. So I had to go back for a contrast echo, which meant cannulation and more jabbing in the ribs, this time with a heart specialist. So far, so good, no recalls.

Chemo 7 itself went ahead first week in February. It was the first one I did by myself, no chauffeur and no entertainer. I don’t feel ill until later on that evening so it is perfectly manageable. As I don’t have steroids or sedatives, it’s quite speedy and I’m fine to drive myself. Later on it hit me quite hard and I slept for nearly two days. My hopes that the dose reduction would help, proved not to be the case. I didn’t start to feel better and by the weekend I knew I was in trouble. I tried to go for a walk and was struggling to breath. Everything was hard work, I was wheezy, breathless and completely exhausted. On the Monday I went back to the cancer centre for blood tests and surprise, surprise: platelets, red and white cells were all far too low. This was particularly disappointing as right before the 7th dose, my blood counts were really good. I had convinced myself that I had this chemo cracked. That is probably another reason why I didn’t take up the offer of a chemo holiday. Anyway, the next day, which just so happened to be World Cancer Day, I found myself back at the cancer centre, for a six hour blood transfusion. I was also prescribed another load of anti-biotics as the neutrophils were rubbish and my risk of infection was high. This would be a good time to point out that my chemo nurses are spectacularly brilliant. They know me so well now that they can tell almost by looking at me what I need. Apart from their ability to look after me they are just such lovely, special people. It doesn’t matter how terrible I feel, or how much I dread a treatment, I know that as soon as I walk in there, I will feel better and be cared for so wonderfully. They are all, and this is especially important, excellent huggers.

All of the above has happened within a couple of weeks. So it’s fair to say it hasn’t been the most joyous of times. However, next week, unbelievably, chemo 8 is scheduled, so fingers crossed for that. I think.

Somewhere in between all of that, I headed back to The Cotswolds with one of my best girls to celebrate her birthday and do a little more exploring. It was very typically January, so there were plenty of pit stops for hot chocolate and opportunities to warm up in front of open fires. Every time we go we find more places we want to return to and this was no exception.

My sister has been reminding me for a while that I promised to do more fun stuff with her rather just let her come to chemo and then watch me sleep for 2 days. So, she scheduled a non-chemo visit and last weekend we headed to Windsor. This was her first trip to the royal borough and so we pushed the boat out and stayed overnight. We had a really lovely trip and I showed her all the sights. We don’t know why “Goswell” is such a common feature in Windsor and it’s not a name that you see often, so when we do, we get very excited. Many selfies were taken and when that wasn’t quite covering it, she took to accosting strangers. The sun was out on Saturday so we were lucky to see the town looking it’s best. By Sunday, Storm Ciara had arrived and we scampered from one shop to the next whilst getting soaking wet and blown sideways. It wasn’t quite so much fun so we escaped inside and ate ice-cream instead.

I have been back at the hospice for yoga, when other appointments permit, which is just great. I also had acupuncture this week to try to help the fatigue. I have been taking afternoon (germ avoiding) trips to the cinema, and there have been plenty of lunches and dinners out. So whilst it has been an intense few weeks from a treatment perspective, I am keeping up my side of The Prof’s deal and doing some pretty good living.

It has also been a quite extraordinary few weeks for receiving gifts. I have been sent flowers, cards, chocolates and beautiful bulbs. All from people just reminding me that I am not in this alone. The day I set off for the blood transfusion I picked up my post on the way out. As the new blood was slowly transfusing in, I opened a lego parcel from an old school friend. It couldn’t have been a kinder or better timed gift, I sat in my chair putting my lego together and once again counted my lucky stars that I am surrounded by thoughtful, generous and kind people. The same day, I opened a letter from an old family friend who has known me since I was tiny. The letter was so beautifully written and she reminded me of a couple of stories of when we visited her when we were little. It brought such a smile to my face. For all of this, I am so grateful.

As I write, I am reminded (because it is hard to ignore) that it is Valentine’s Day.  I am also reminded that I gave myself the 2020 mantra of LOVE & HOPE. So once again, here’s to all that love and are loved and may the day of hearts bring you hope.

heart

Happy St. Val’s you beauts.

Big Love, AG xx


KEANE : Bend and Break

When you and you forget your name
When all the faces all look the same
Meet me in the morning when you wake up
Meet me in the morning then you’ll wake up
If only I don’t bend and break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
Bitter and hardened heart
Oh
Aching
Waiting for life to start
Meet me in the morning when you wake up
Meet me in the morning then you’ll wake up
If only I don’t bend and break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
If only I don’t bend or break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait

 

Everywhere you’ve been with me all along. Why me? How’d I get this hallelujah?u

It’s already starting to feel like Christmas was quite some time ago. New Year went by in the blink of an eye, and here we are and it’s nearly the end of January. There have been a few days this week when there has been a distinct whiff of Spring in the air. As quick as I am to get excited about the coming of a new season, I also have to caution myself not to fast forward the months away.

February will be my 3rd canciversary. 3 years since I was diagnosed with primary breast cancer and 2 years since I was told the cancer had spread and was stage four. This is my fourth year of living with the disease. I have written nearly 30,000 words in these blogs about what my life is like with cancer. I’m still not sure I do a very good job of explaining how it feels. How I feel. I am often asked “how are you, in yourself?” It’s almost impossible to put in to words. Some of those words would be sad, scared, but resilient and hopeful but on a bad day more like lost, angry and crushed.

The problem with anniversaries is that it makes the clock tick a little louder. It focuses the mind and brings you back to the reality. It reminds me of the day I walked out of the breast unit for the first time and I promised myself I would be OK. And I should know better than to make promises. It reminds me of the days that it took everything I had to pick up the phone and share bad news. It reminds me of the number of times people have turned away from me so I can’t see them cry because I am making them so unbearably sad. It reminds me that I have had a really bad start to the year for 3 years. It makes me fretful for January and February. This is the time of terrible diagnoses and treatments failing, meaning tumours marching on.

Anniversaries are about length of time, and that’s the worst part about it. The longer I’m here, the more I am eating in to the average survival time. Survival rates for people with primary breast cancer have improved so brilliantly over the last few decades. The progress is simply astounding and we should remember those brave women who put themselves through trials so that the generations ahead of them would stand a better chance.

I can’t help but be aware of the survival rates for those with my type of cancer and it doesn’t make for happy reading. This would be a good time to stop the clock.

There is of course an argument that statistics are only that. In many ways, and particularly in this situation, for me, they are not helpful. There are exceptions to every rule and I for one have always enjoyed a slightly Machiavellian approach to life and will, with every fibre I have, do my best to laugh in the face of a number that I do not like the look of.

In my last blog I wrote about the false start to chemo treatment number six. As a result of pretty terrible blood counts on New Year’s Eve I was sent home to have another week off chemo and hope that they picked up. I enjoyed a peaceful week, mostly trying to stay away from everybody who seemed to have the remains of festive lurgies. I went for an aromatherapy massage to get my year of looking after myself off to a positive start. It was delightful. Very soon the week had passed and I went back to the cancer centre for the first blood test of the year. Fortunately, everything had improved, my haemoglobin and white cells had lifted considerably so finally, the following day, chemo six was go. The chemo cycle is meant to be every 3 weeks. It took nearly 6 weeks to get from chemo 5 to 6. Partly this was due to some creative festive planning on my part, but was largely because it involved 3 sets of antibiotics, a blood transfusion, and a trip to A and E. I think the longer gap significantly helped my tolerance of the sixth dose. I felt pretty rubbish for two days, but since then I have recovered along a reasonably linear curve. This is unheard of usually for me. Whatever the reason, it has been an unremarkable cycle (so far) and for that, I am very, very glad.

Last week, a friend and I set off early one morning in the dark, and heavy rain, for Mount Vernon hospital. It was MRI time again and the stormy weather was not giving me much cause for optimism and joy. I always say that I assume the treatment is working until The Prof tells me otherwise, but it’s really hard to maintain that around MRI time and particularly at this difficult time of year. I didn’t hate the MRI too much this time. I was so tired I think I nearly fell asleep. The anxiety came afterwards as I started to think about the results. I found this MRI/results cycle really stressful. There is so much depending on this chemo working. In fact, everything is depending on this chemo working. I have learnt the hard way that just because it worked once, does not mean it will continue to work. The one thing we know for sure, is this chemo will stop working at some point, so it’s something of an understatement to say that I dread the wait and I dread the results.

Early this week, The Prof’s secretary called me to let me know that the planned clinic wasn’t going ahead and I would have to wait until the end of the week to get the results. I begged and pleaded not to wait. I suggested I see somebody else, that they email me the report, and other non-protocol options, because, as I explained, I would have completely lost the plot if I had to wait. A few moments later, The Prof sent me a WhatsApp letting me know the results. And I quote “Your recent scan is all lovely and stable…” there were some other words but I couldn’t see them through the tears. It’s worth noting that The Prof did not need to go out of his way to send that message, but he did because he cares enough to not put me through the torture of not knowing for four more days. A bit later on I saw the full MRI report and it’s better than any I have read in a long time. The radiotherapy in November and the chemo have both done their job. Stable is the best thing we can hope for at this stage, so this is really just the best news. For those who are fans of detail and like to google medical terminology (and who doesn’t) this is the final statement on the report “The bony metastatic disease is regarded stable overall. Regenerative nodular hyperplasia within the liver, showing slight improved appearances. Against the extensive background, the true extent of active disease is difficult to ascertain. On the whole, the appearances have not worsened. No new sites of metastases.”

I sent the full report to my sister who pointed out that it also stated “The contralateral left breast is unremarkable” – we both agreed that was kinda rude.

So I continue onwards to chemo number seven, and we hope hope hope that it continues to fight the fight and that the rest of me can continue to tolerate the treatment to an acceptable level. Fingers crossed.

Not too long ago, I wrote that I would stop talking about hair. I would however like to update on a very strange thing that is happening. About a month ago I noticed some tiny lumps on my head. I thought maybe it was a rash. Then I thought maybe it was raised hair follicles. Sure enough, within a week I had the tiniest tufts of fluff appearing on my head. I also noticed really fluffy white hairs appearing over my recently micro bladed eyebrows. I now have a pretty extensive head of stubble. It’s strange, but not unheard of, that my hair is fighting back whilst still on treatment. It may be that it will fall again, either this chemo cycle or the next. But for now, it’s a welcome break from the routine and is very strokeable!

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I have been trying to keep busy with walking and self care. There have been a few trips to the cinema and last week I had a session of reiki at the hospice. I hope to be able to have a few more. I can’t profess to understand it, but I know that I felt super relaxed and calm afterwards. In an MRI week, that was quite the achievement. The wonderful volunteer that provided it told me I have “awesome energy” so I will take that any day. I am starting a new course of yoga this week at the hospice too, so I’m really looking forward to that.

I am planning to make the most of the short window between fantastic news and getting back on the chemo treadmill. You will find me somewhere between a piece of cake and a chilled rosé.

Have you checked yourself lately, or asked somebody else if they have?

Get friendly and have a Friday feel…

tlc

Big Love, AG xx


This is a great tune, and if you haven’t heard it, I urge you to give it a listen:

Haim : Hallelujah

I met two angels but they were in disguise
Took one look to realize
Tell ’em anything and they will sympathize
These arms hold me tight
Old fears, helped to ease them in my mind
New tears say that they will dry in time
Why me? How’d I get this hallelujah?
Hallelujah
Laughing together like our thoughts are harmonized
Been that way since ’95
Give me direction when it is hard to fight
Three roads, one light
Now and then I can lean my back to yours
Travelin’ like our feet don’t touch the floor
Why me? How’d I get this hallelujah?
Hallelujah, hallelujah
Why me? How’d I get this hallelujah?
I had a best friend but she has come to pass
One I wish I could see now
You always remind me…

I wish you joy and happiness but above all this, I wish you love

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The last time I wrote I was in the middle of a blood transfusion and was concerned that my festive plan was going wrong. The good news is that the new blood did it’s job and after a few days I began to feel better. I had another blood test and sure enough the whites, reds and platelets had all picked up. My rubbish immunity due to low white blood cells had put pay to some of the festive fun I had planned, but when you need to stay in and avoid all germs in order to be well at actual Christmas, then so be it. The whole of November and December had been scheduled to make sure I was fighting fit and out of the chemo fog by Christmas. Whilst I can control appointments, tests, etc, I am yet to be able to control what goes on inside my body, so those first few weeks of December were quite a concern that I might not be well enough to travel. Or well enough to get out of bed for Christmas. I can’t begin to explain how angry I would have been with chemo if that had been the case. Fortunately, all was well and I set off to my parents’ home in west Wales in mid December. Normally I am very happy to set off on a six hour journey by myself, but this time I was a bit worried about what would happen if my energy fell off a cliff half way there. My lovely Dad agreed to get the train and we met half way so he could chauffeur me home for the last leg.

Another little notch of my independence and freedom taken, thanks to stage 4 cancer. Despite that, I was so pleased and grateful to finally make it to Wales and let the celebrations begin. And so they did. Where they live is a beautiful, historic and tiny village but full of life and community and wonderful people. We had a good few Christmas parties and celebrations that were just so joyful and fun. I spoke to a number of people in those weeks running up to Christmas that were so very kind about what they read here. I am truly flattered that anybody bothers to read it at all, but when I am told that people really value my writing, then I am somewhat taken aback. It’s very nice to hear and I am humbled to know that you are here with me. Over the last few weeks this blog went over 15,000 views. Thank you.

Of course, the problem with parties and socialising, is it is not practical to ask people to bathe in anti-bacterial before they attend. And so, as sure as night follows day, three days before Christmas I started sneezing. Since the transfusion I had tried everything I know to boost my immunity: berocca, echinacea, actimel, regular dosings in anti-bacterial, but it wasn’t enough. Of course normally a Christmas cold would not be anything to worry about, but would at worst be massively irritating. When your body is chemo wrecked, a cold can fast become a serious battle. I took my temperature on Christmas Eve Eve and sure enough, it was too high. I called the cancer centre to check I was OK to take Lemsip (?!) and they told me to go straight to A&E. It felt like a massive over-reaction at the time but, being the good patient I am, off we went. I won’t bore you with every detail of the 6 hours I spent at Withybush Hospital, but I will tell you I was ultimately very impressed with the care and attention I received there. In summary; I had a blood test and the Doctor then told me the medical team had had a meeting and decided I probably had the beginnings of an infection and that I should be admitted. At that point I shed a few tears for sympathy and very quickly had to come up with a negotiation strategy. There was absolutely no way, that after everything I had been through to get me in to a fit state for Christmas, that I was going to spend it in a hospital. Absolutely not. I went in to a high level of detail with the Doctor about why they thought I had an infection, and, once again, it came down to my crappy white blood cells. Fortunately my detail freakery allowed me to demonstrate that whilst they were rubbish, they were not as rubbish as they had been. Every time I have a blood test, I always ask for a full print out and I carry the last few with me. Taking those with me to hospital that morning was the only reason I was not put on a ward. After more begging, and crying, they agreed to let me have a chest x-ray, urine test and a few more bits and pieces to check they weren’t missing anything major. Everything was clear, and so with a double dose of penicillin for a week, I was sent on my way under strict instructions to call an ambulance if I deteriorated. All a bit stressful.

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You may remember I refused IV chemo last summer after two regimes of oral chemo failed to halt the spread. My reasons were not wanting to be made more ill, not wanting to risk infections, not wanting to spend too much time in hospitals and above all, not wanting to spend time being paranoid and full of anxiety about what my body is doing. Well guess what, sometimes being right is shit.

Finally, after all the planning, prepping and waiting, Christmas Eve arrived.  There was really only one thing for it and that was to throw myself in to it and celebrate in true GozFam style. And so we did.  On Christmas Eve my sister and I created our GozGirl Christmas video. We had less time this year so kept it simple. About a month earlier I had sent her a link to KT Tunstall’s Mele Kalikimaka expecting her to tell me it was a very bad idea, but she agreed and we went for it. It’s always such a hilarious few hours and a highlight of our time together.  Christmas dawned and as always the day was full of love, laughter, prosecco and on this occasion a trip to the beach in the morning in the sunshine for a paddle. Yes really! I’m not sure if paddling in a very cold Irish sea on the Welsh coast is a good cure for rubbish white cells, cancer, festive lurgy and a chemo blasted body, but I don’t actually care and I didn’t let it stop me. Christmas day with GozFam was just ruddy marvellous.  I would say perfect, but MaGoz burnt the pigs in blankets for probably about the 10th year in a row.

In fairness I probably overdid it and come Boxing Day it was quite a struggle to get out of bed, so I didn’t.  I did eventually, but it was very clear that my energy banks were empty and I had used all the spoons.  I rested as much as I could, and there’s really nothing to complain about being wrapped in a blanket, drinking tea and reading your gifted books.

My sister had kindly agreed to help me drive back home as I had a chemo session planned on New Year’s Eve. The night before we were due to leave a neighbour called to ask if we had lost a sheep.  We hadn’t as it happened, but a ewe had got lost and was stranded in the river.  So on our last night in Wales, Emma found herself in a river trying to push the rear end of a sheep onto the bank whilst the rest of us pulled.  I really think you had to be there to appreciate this story in full, but suffice to say, the sheep appeared to really want to go back in the river, and it took us an hour of pushing and pulling to get her back to safety in a field.  By which time, it was dark, everybody was exhausted, wet through and covered in bruises. We named the sheep Esther after Esther Williams and she is currently residing in luxury in the paddock in front of my parents’ house.  It was an exciting end to a fabulous Christmas.

This is a good chance to thank all the amazingly generous people who sent flowers, gifts, beer, wine etc, etc to the family. Every delivery came as a really lovely surprise and you are all wonderful. Your support is much appreciated.

My sixth chemo was scheduled for New Years Eve – terrible I know, but I did it so as to have as much time in Wales as possible.  My sister and I packed up a very full car load and headed home.  We set off to the cancer centre and as always, bloods were taken and counts done. Quite quickly it became apparent that things were not looking great. White bloods cells were low and haemoglobin and platelets were boarder line.  The Prof was consulted and he determined I was not fit for treatment.  Thanks to the Christmas lurgy, it seemed there was a lingering infection and I hadn’t recovered enough to go ahead.  I probably should have been happy that I got another week off chemo.  I really wasn’t though.  It’s a scary place to be when your body is not doing what it is supposed to do. It’s annoying when plans are made and they fall through – everything in my life is planned around treatment so when the schedule breaks, there are knock on effects.  My sister didn’t have to give up her New Year, but she did and that proved to be unnecessary.  Anyway, we know what happens to the best laid plans.

I was prescribed my third set of anti-biotics of the month, and we set off for home. Slowly it dawned on me that I had expected to spend NYE in bed trying not to puke, and I realised that a silver lining was appearing.  We bought steak and prosecco on the way home and had a really fun evening.  We can’t even remember the last time we spent a New Years together. So there’s another small mercy to be grateful for.

I will go back to the cancer centre next week for bloods and hopefully, get chemo number six done.  Mid January is MRI time again and after that I will meet with The Prof to see how everything is going and plan next steps.  I am concerned that despite a 5 week gap (where it should be 3), a blood transfusion and three different types of anti-biotics chemo is really taking it’s toll. The effort of getting from chemo five to six has been a real test.  I am reminded of a discussion The Prof and I had a few months ago when he told me that there are only two reasons to put patients through chemo: it has to work and the patient has to be able to tolerate it. We will await The Prof’s verdict. 

Apart from all of that, I am utterly thrilled to have made it to a new decade.  2020 seemed a really long way off not very long ago and here we all  are.  Well done us.

I will start the year as I mean to go on.  Determined to do everything I can to protect my well being and continue to put up the fight.  I will not lose sight of the fact that this will be the fourth year of living with a life limiting illness.  It’s quite tiring as a concept, so I will look after myself and give myself a break every now and then. I may even stop trying to control and plan everything.  It will require a re-wiring of my DNA but it will hopefully make it easier to live in the now.

I have recently been watching Heartstrings on Netflix.  All hail Dolly Parton, if you please. At the beginning of one episode, she says that hope and love are the two greatest powers.  Perhaps you will join me in channelling Dolly this year.

I wish you and yours a very Happy New Year and a healthy, happy and decadent decade.  May it be filled with hope and love.

Big Love, AG xx

 

I will always love you / Dolly Parton

If I should stay
I would only be in your way
So I’ll go, but I know
I’ll think of you each step of the way
And I will always love you
I will always love you
Bitter-sweet memories
That’s all I am taking with me
Good-bye, please don’t cry
We both know that I’m not
What you need
I will always love you
I will always love you

I hope life, treats you kind
And I hope that you have all
That you ever dreamed of
And I wish you joy
And happiness
But above all of this
I wish you love
And I will always love you
I will always love you
I will always love you