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

 

 

 

 

 

 

From a distance my choice is simple

Audio version: Here

Somehow or other, the sixth month of the year is here. June. Up there with my favourites. Blue skies, green fields, bright, light evenings, the realisation that the hibernation is over. Peonies, sunflowers. Chilled rosé on a warm afternoon. That of course would be a normal June. It seems 2020 is intent on reminding us that we are not in charge of our own destiny. And whilst the sun has been shining, we can still drink rosé and my flat is full of peonies, it’s just not quite the same, is it?

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It seems incredible to me that time continues to fly, even in these weird circumstances. How is it possible that the longest day and shortest night will be here within a matter of a fortnight?

Last time I wrote I was in Wales enjoying some much needed time, albeit lockdown time, with my parents.  I don’t think I have known a May like it and I spent just about every day for three weeks outside. I also brushed my hair for the first time since September!

In a beautiful small coastal community it sometimes felt like time had stopped. I was suspended in a cancer treatment free bubble and felt protected from the world and it’s ever increasing troubles.  I went for days without listening to the news and whilst I’m not normally one to apply the blinkers and pretend that everything is OK, this felt like the right thing to do to give my brain some space and rest. The suspension of reality had to come to an end eventually and I returned home in time for treatment.  Not before I had lots of lamb hugs and the gorgeous members of the community I inhabited for a few weeks told me how pleased they were to see me and asked me to come back as soon as possible.  Their kindness and generosity of spirit fills my soul.

Despite the escape from treatment, whilst I was away I was continuing to experience increased pain in my lower back and pelvis.  As I am in regular contact with the hospice, my concerns were raised with one of the palliative specialist Doctors there. We agreed that the patches I had been using to manage pain were not helping and she was able to contact my GP and get a prescription for stronger anti-inflammatories. There was also some concern about spinal cord compression.  This is a risk for anybody with tumours in their spine. There is a chance that the tumours will start to put pressure on the spinal cord itself and with that comes significant problems with neurological function.

Treatment day arrived and I set off to the cancer centre for my Fazlodex and Denosumab injections. The treatment and port flush were relatively uneventful, although painful. Whilst there we discussed my pain symptoms and The Prof was consulted.  It was decided that I would be fast tracked for my next MRI.  It was due around this treatment cycle anyway and it was agreed the sooner they checked what was going on, the better.  24 hours later I was back at the hell hole in Mount Vernon hospital.

I had mentioned to the nurses at the cancer centre that I was concerned about being able to get through the MRI at all.  In the past the problem has been anxiety and claustrophobia, I have not enjoyed being strapped down to a metal sheet and sent into a tunnel, unable to move, for an hour and fifteen minutes.  This time, my concern was pain.  I can’t lay on a mattress on my back for ten minutes without the pain being unbearable.  Their suggestion was to double the pain medication, add in a sedative and also take an opiate painkiller right before the scan.  That might sound like some people’s idea of fun, but I was somewhat off my head. The nurses at the MRI unit looked after me wonderfully.  They reassured me that I could take a break and wriggle and wiggle when I was given permission, for the rest of it, as always, it’s a question of not moving a muscle.  Despite all the meds, there was still some pain, so I did take a break after the 30 minute spinal scan.  Eventually I made it to the end, and was so relieved.  As soon as I stood up to leave I thought I was going to pass out and be sick.  The passing out never happened but the vomiting started once I made it home and went on for some time.  Pain relief and sedation does not come without it’s down sides.

Despite taking Oramorph (morphine based opioid) previously, the dose on scan day and subsequently have proved that it really doesn’t agree with me.  I started taking anti-nausea tablets as well and they really have not helped. So it’s back to the drawing board for pain relief.  Meanwhile, it’s increasingly hideous and difficult to sleep.  I have been relatively lucky so far to not suffer too much from pain.  It turns out I am not very good at handling it.  I have never experienced anything that can’t be helped by knocking back some pain killers and spending an hour on the sofa with a good book.  The relentlessness of the nagging, continuous, chronic pain is an insight that I never wanted to have.  I have huge respect for anybody that deals with pain on an ongoing basis.

The scan was late Friday and as night follows day, Monday evening I was summoned in to see The Prof.  I got my new hospital outfit on (gloves, mask etc), I arrived and he called me sausage and I knew straight away I was in trouble. The disease is progressing and the Fazlodex has been next to useless. There is tumour development in liver and bones which is as bad as it gets.  The pain in the pelvis is coming from disease spreading across pelvis, sacrum, hips and lower spine. Worse, the liver has deteriorated and, as I’ve pointed out before, but I will repeat, I can’t live without a functioning liver.

It’s devastating.  Each time a treatment fails or doesn’t do what you hope it would do, another door closes.  Another step is taken towards the inevitable outcome. It has happened many times over the last three years but each time is another step up the ladder from which there is no way down. It gets harder every time and each time a little bit of hope is extinguished it gets more and more difficult to accept. I have never pretended that there is a way out of this disease for me but stability is the only thing keeping me here. We haven’t seen that stability since the IV chemo failed and the reality slaps are really starting to sting.

The Prof and I discussed how we get the pain under control as a priority.  He set me up with an appointment to see my other oncologist, he who specialises in radiotherapy.  I will also seek help from the palliative care team at the Hospice and the pain specialists at the cancer centre to try to get the pain management under control.

I feel The Prof gets nearly all of my attention in my writing.  I need to make clear that my “other oncologist” is also a super human and special person. I have been to see him this week and as always he looked me in the eye and asked me how I was feeling. He is always so kind, and positive and, now that we have had many, many discussions knows I need detail.  He makes a point of talking to me before looking at the images so he is listening to what I am telling him rather than interpreting the scan without hearing my voice. This is particularly important, in my case my MRI report details deterioration on the left, but in fact my pain is almost entirely on the right.

We agreed that he will treat the right side of my pelvis and also lower spine.  We hope that this will put a stop to the pain.  Historically my bone mets have responded well to radiotherapy, so far I have had multiple sessions on neck, sternum, hip, T and L spine and of course originally the boob.  This time around it will be five sessions covering two sites, so ten treatments over five consecutive days.  This will be tiring, the skin may get aggravated, but otherwise the benefits should far outweigh the short term side effects. I will have a CT scan to enable the planning and then hopefully begin the treatment late next week.

Whilst with The Prof we agreed that there was no point continuing with Fazlodex. I will continue with the Denosumab bone therapy injections and daily calcium tablets but until the radiotherapy is finished, I will not have any tumour targeted treatment.  We had quite a difficult and philosophical conversation about what will happen after that.  Now that the original IV chemotherapy has failed, and I have exhausted all other options, there is really very little choice available.  He pushed me to think about whether I want to suffer any more treatment at all.  As I said before, my liver won’t survive very long without finding some stability.  I virtually begged him to come up with an alternative, in fact I asked him to find some magic.  There isn’t any, of course.  There is an option to try another IV chemotherapy, which may or may not be effective and may or may not give me all the horrendous side effects that I suffered over the last six months.  I don’t yet have the answer as to which of these terrible options will be my choice.  The good news though is that it is my choice.  The other good news is that my spinal cord is fine, no sign of cord compression.

In some blogs I get to brush over the treatment as not much is happening and spend more time writing about all the fun stuff I have been doing.  This is not one of those blogs.  Between, travelling, treatment, pain and being floored by bad news, it doesn’t feel like very much else has happened.

However, I have been able to take advantage of the change in lockdown conditions and have had a few outdoor distanced meets ups.  One of these was one of my best girls birthdays.  Is it my imagination or have there been an awful lot of lockdown birthdays recently?! I have been trying to organise my summer planting on the balcony, although this is harder than you might imagine when you don’t want to go to shops. I continue to take advantage of the Hospice zoom meetings doing yoga and physiotherapy.  All of this has provided the perfect balance to what has been one of the very worst of weeks.

I have been really lucky to receive lots of flowers again recently.  There has been a plethora of peonies and I am so grateful for these.  They raise a smile every single time I look at them.

 

Huge thanks to everybody who reached out to me this week and has helped pick up the pieces.  You know who you are. I am already feeling better and more positive than I was at the beginning of the week. I will put on my big girl pants, turn my face to the sun and get the hell on with the radiotherapy.  Let’s see what happens by the end of the month.  I have to celebrate getting another year older after all!

Big Love, AG xx


Emeli Sandé : Clown

I guess it’s funnier from where you’re standing
‘Cause from over here I miss the joke
Clear the way for my crash landing
I’ve done it again
Another number for your notes
I’d be smiling if I wasn’t so desperate
I’d be patient if I had the time
I could stop and answer all of your questions
As soon as I find out
How I can move from the back of the line
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circle
I’m selling out tonight
I’d be less angry if it was my decision
And the money was just rolling in
If I had more than my ambition
I’ll have time for please
I’ll have time for thank you
As soon as I win
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circus
I’m selling out tonight
From a distance my choice is simple
From a distance I can entertain
So you can see me
I put makeup on my face
But there’s no way you can feel it
From so far away
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circles
I’m selling out tonight

 

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.

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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