• Bekky May

Where to begin..?

PLEASE NOTE - The blog has been being complicated and I've had to do some techy-geeky stuff. This post was originally published on 17th Jan 2020 so forgive me if you're reading it thinking it's a new post!



This is quite a long one. Sorry.

What a few months it's been - pretty much entirely awful, with the occasional bit of good thrown in to keep us going.

November and the weeks leading up to it were, comparatively-speaking, pretty good. I was to be found meandering the countryside (while not indulging in my favourite recreation of fortnightly chemo) telling anyone that would listen that, even if I was not "winning", I certainly wasn't losing. The chemo appeared to be working, I was largely coping with it and I had the energy to gad about, go to work occasionally, do a bit of socialising - you know...life?! It was really quite good for a few weeks.

Bekky was busy busy busy with her studio work and her teaching (she's a university lecturer these days, doncha know?!), even the dog was behaving and not having the epileptic fits to which she has become prone. And I was reducing my steroid intake, in order to try to reduce my appetite and thereby reduce my moon face to something less akin to a gerbil.

It all changed, however, when I awoke on the morning of 25th November with a slight temperature. When one is mid-chemo, this means only one thing - straight to A&E to ensure there isn't any neutropenic sepsis going on. We presumed I would be in and out in a day but they kept me in for three nights while pumping me full of antibiotics just to be on the safe side.

SLXLM​​

It was pretty awful but had to be done. However when I emerged I was then blessed with new ailments - not just weakness and fatigue but a great deal of abdominal pain. The pain seemed mostly to come after eating, so Bekky and I reduced my diet to low fibre everythingto keep things moving, and soup. Lots of healthy, homemade soup. Oh, and painkillers, that sometimes helped and sometimes didn't seem to do anything at all.

The pain was stubborn and left me moaning and groaning, sometimes all evening, sometimes through the dead of night, sometimes in the day. It was difficult to predict and difficult to eliminate but would usually last several hours before subsiding. We presumed it was more adhesions, which I had undergone surgery to remove back in February last year, so we spoke to my GP and my bowel surgeon, and also took advice from a wonderful, kind and generous friend of mine from university who happens to be a gastro surgeon, and we all concurred that it was most likely to be adhesions, although the oncologist did warn us disease progression was an obvious possibility too.

Whatever it was, though, the pain wasn't shifting. So, in early December, I had a CT scan and at the same time it was decided that more Radio Frequency Ablation to try to whack a couple of tumours in my liver would be sensible.

And so it was that, a few days later, Bekky and I found ourselves, bright and early, in the lobby of The Princess Grace Hospital in London when a message pinged up from my oncologist asking to see me three days later in clinic. She wouldn't tell us why. If you had been watching us, sitting quietly in the lobby of the hospital, you would have seen the colour drain from our faces in unison. When your oncologist requests an urgent visit but won't say why, it only ever spells bad news.

Despite this, the RFA went ahead according to plan and I was out the following day.

That was Wednesday, so we had a couple of days of fairly monumental scanxiety to get through before the looming meeting. Friday evening was upon us quickly though and on entering the consultation room, we found not only my oncologist but also a Clinical Nurse Specialist waiting for us. Again, never a good sign.

My oncologist is a straight talker, and there was no sugar coating. The scans the previous week had revealed that everything was worse. The delay in chemo due to the stay in hospital and ensuing abdominal pain had allowed the cancer to do what it does best.

More tumours, enlarged lymph nodes, but worst of all, the cancer had spread to my peritoneum - the abdominal wall. This had been one of our worst fears since diagnosis. There is little that can be done once it reaches this stage. This was where the abdominal pain had been coming from. Worse still, one of the new tumours in the peritoneum is close to some significant kidney and pancreas pipe work and if it grows and impinges on said pipe work, I could be done for fairly quickly...

The actual prognosis was understandably loose. Nobody knows really - she said it could be a few weeks, it could be a few months, if I'm very lucky and treatment goes exactly according to plan, it could be more than a few months.

But she stressed one thing that gave us an iota of hope - she said that if she didn't feel there was any point in continuing treatment, she would say as much and tell us to enjoy the time we have left while I'm feeling moderately well and can get about under my own steam. But she did not think we were there yet. The priority was now to get some poison into me. How were we fixed for Monday? Because, whatever we might have planned will be cancelled, and I will be back in that chemo chair. That's the only chance I have.

In one short meeting, incurable had suddenly become starkly terminal.

We left the consultation with, yet again, our heads spinning. On our way out, the oncologist gave Bekky a hug and said "I'm so sorry". Never words one wants to hear from anyone really, let alone the person responsible for keeping you alive. We went out into the corridor and sobbed into one another's shoulders.

The next few days were horrific as we both grappled with the reality of the situation. Bekky and I talked, a lot. We cried, a lot. We hugged, a lot. We went into a kind of protect/hibernate mode. We simply needed to be on our own in order to try to process things.

The Hospice at Home nurses came to see us the following Tuesday, Christmas Eve, to discuss enhanced pain relief and to get us properly 'on the radar'. We now have a weekly phone call to check in with us and see how things are going, which is surreal but very reassuring.

Chemo took place as planned two days before Christmas, and then on Christmas Day we even managed to spend an hour with the family, exchange some pressies and have a microscopic glass of bubbles which was a real treat.

​​SMLXL

And then there was a minute dollop of good news - since the first round of chemo, the abdominal pain had vanished, and hasn't returned since. The hope is that the chemo has had an effect and reduced whatever growths were causing the pain but, either way, the pain has gone and I have been eating well ever since. I had lost about 10kg while in pain, and this weight loss has since stopped too. Thank flippin' flip for the odd moment of good news.

So what's next? Plenty of RFA, for a start. I had a procedure to my liver earlier this week, then there will be two procedures tackling each of my lungs later this month with a generous sprinkling of chemo in between times. The great Professor Leen, my RFA man, has said that he should be able to ablate (i.e. kill off or at least shrink) not only both the significant tumours in my liver, but also the larger tumours in my lungs.

Meanwhile, Bekky and I are in the process of trying to "get my affairs in order". I suddenly seem to have a last will and testament, we have planned some of my funeral arrangements, we are speaking to solicitors about legal and financial things. It is all very real, and profoundly horrifying.

But, as I have mentioned before, the single greatest horror for me is the concept of leaving my wonderful, extraordinary, beautiful, capable yet fragile wife entirely alone. The one person she will need to be with her, to support her, to provide a degree of normality when I am gone is the one person who will not be able to be with her. It is a concept too awful to even consider.

By comparison, the concept of my potentially looming demise is doubtless frightening, not to mention upsetting and, weirdly, disappointing (I'm only 41, FFS - there's so much more life to live yet), but it pales into insignificance beside the feelings I am experiencing for Bekky. Words will never, ever begin to be able to describe how that feels.

We had LIFE plans, of course. Not just the usual career/home/travelling sort, either. We wanted to have kids, a little family of our own. But over the last four years, cancer has done its best to hinder this at every turn. And then, shortly before the latest horrendous news of cancer progression, just as we were getting the IVF ball rolling once again, we found out that Bekky's AMH levels were now too low to even consider trying. It's too late, because of cancer, to even try to have a baby.

There are no words, just a heavy, suffocating pain in our hearts that will take us, and Bekky in particular, a very long time to come to terms with.

All in all, you might now be able to see why I started this blog by saying it's been a pretty much entirely awful couple of months. And I'm not really one to complain!

LXLMS​​

We're ok, Bekky, me and the dog. We're tucked in at home mostly, with the fire burning, trying to look after ourselves and trying to come to terms with the circumstances, trying to make plans and balance treatment with life.

It's not easy, but we're doing our best. It's also hugely, hugely emotional - I have discovered emotions I didn't know existed in others, let alone myself.

And Bekky has been extraordinary. I have had periods of great weakness and fatigue, not to mention pain, and she has been by my side without missing a single, solitary beat. She has looked after me and cared for me better than I could ever have hoped anyone could. The love that carries between us is vast, all consuming, and this whole situation has only gone to deepen that love.

We have also been overwhelmed by the love that others have shown for us, by our friends near and far, my brother and his family, my own wonderful parents and family of course. Literally overwhelmed. So many people care, and we have had so many messages of love and support that at times it has been impossible to keep up. It is hugely appreciated and helps support us more than you will understand. Forgive us if it takes a while to respond to messages though!

So there you have it. It's all desperately sad, but as I say, I have absolutely no intention of shuffling off yet. I want at least one more summer for starters, and it had better be a hot and sunny one.

But most of all, for the last four years I have been looking at the annual appearance of bluebells as a bit of a yard stick. Their appearance heralds the arrival of spring, and my birthday (23rd April, in case you're wondering :) ), and a general feeling of an overdue emergence from winter. And every year I look at them and wonder if this will be the last time I get to see them and smell them. I willsee them again this year, and I have every intention of seeing them again next year. After that, who knows, but that's the plan. And we're doing everything we can to make sure it happens.

Huge love to you all.

PS VISITING

Many, many people have, completely understandably, asked to come and visit us. And being the social sort that I am (was!), I want nothing more than to see people! I need to see people - it recharges my soul, lifts my spirits and allows me a brief slice of normality. But for now it's a don't-call-us, we'll-call-you situation.

First, don't panic! I'm not going anywhere yet if I can help it. The oncologist mentioned weeks but I like to think was talking more in terms of months and, as I mentioned before, with a little luck, potentially a year or three. I have every intention of smashing expectations out of the park so there's no mad rush to come and see me before "the inevitable"!

Second, and possibly most importantly, our treatment timetable and my energy levels just don't allow for visits at the moment. Sitting, shooting the breeze for half an hour (which always turns into an hour or two) over a cup of tea is absolutely normal and relaxing for most, but I have such limited reserves that even a brief visit or phone conversation knocks me sideways, despite impressions at the time.

The next couple of months are going to be intense with either RFA in London or chemo pretty much every week, so I have to look after myself in order to get through it. The same goes for Bekky who, despite being an absolute trooper, needs to look after herself too, in order to look after me.

And third, infection - I have to be supremely cautious on this front as even a minor cold could postpone treatment. It could speed up my demise significantly and that is a risk we won't take, obviously! Catching a virus while travelling on a train back in November is what lead to my stay in A&E, which delayed chemo and gave way for the disease progression and this latest news. We're quite keen to avoid a repeat.

This all sounds a little self-centred, but it is how it is and please don't misinterpret us - circumstances dictate extreme caution right now, so it's an invite only situation for everyone for the time being. Sorry. We love you and hugely appreciate even the thought of a visit!

PPS It would appear my utterly awesome bro, Phil and his wonder-wife Liz have taken things into their own hands and quietly created a Go Fund Me page for Bekky and me. I can't begin to tell you what a kind and wonderful surprise this was to us. Thank you to all who have contributed so far - your generosity is an extraordinary thing and Bekky and I genuinely cannot begin to express our gratitude.

As Phil says on the page, the aim is mostly to remove some financial stresses for us in the coming months, help to keep the house warm, put fuel in the tank for our endless drives back and forth to hospital, and all the other sneaky extra costs that cancer has imposed on us.

The funds will also allow Bekky to take a bit of a step back from her freelance teaching as I am likely to need her support and care to deal with daily life in the coming months. And hopefully, if I'm well enough, the odd night or two away in order, as my bro so accurately puts it, to occasionally escape the cabin fever, which is all too real!

It seems odd to ask for support but, given the circumstances, if you would like to contribute you can click here.

Thank you, Bro and Liz. We can't tell you how much this is appreciated xxx

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