• Bekky May

It's February!

Updated: Feb 15, 2020

OK, so the bluebell painting might be a touch premature, but it's so beautiful, was done especially for me, and I wanted to show it off. Thank you, Ms. Simpson - it now hangs proudly in our bedroom and we love it.

Right. To business. So far so good, people. I've made it to February which, given the prognosis and very gloomy outlook back in December, is an achievement in itself, I guess.

Indeed, very little has changed thankfully. Don't get me wrong - it has been full-on. Every week since before Christmas has seen Bekky and I either heading up to London for 48 hours for Radio Frequency Ablation at The Princess Grace or heading into The Conquest for chemo. As soon as I am over the RFA, there's chemo and as soon as I am over the chemo, there's RFA. There has been no let-up.

The treatment is manageable. We're used to it, in a weird kind of way. It is the new normal for us. I've just had round 51 of chemo, for heaven's sake, you can get used to pretty much anything after 51 rounds, I'm guessing. And likewise with the RFA - I'm not counting but I would guess I have had approaching ten different procedures to my being under the great Professor Leen and we're now in the swing of things. Early admission to hospital, wait a few hours, get changed into paper pants and "surgery wear", head down to theatre, get knocked out, wake up, spend a few hours coming to, eat a hearty supper, sleep, go home the next day. It's OK. Not fun, but OK.

No, the treatment is bearable. It's everything else that, while bearable, is difficult. The emotions. The not-knowing. The neuropathy (more of that later). The weakness and fatigue. The sciatica.

As I said in the last update, I have discovered emotions I had no idea existed. Music makes me cry. Television programmes make me cry. Conversations make me cry. Thoughts make me cry. I am now so in touch with my emotions it surprises me on a daily basis. It's quite lovely in many ways. Cancer has shown me that bottling things up, suppressing emotions, is a waste of time and effort and doesn't help. Let it out, people. It's no bad thing.

The not-knowing is hard. The meeting with the oncologist back in December was the lowest point of this journey to date, and at that stage, we really thought we had days or perhaps weeks. But here we are, eight-or-so weeks down the road, and very little has changed in terms of my well-being. I feel much as I did back then, if perhaps a touch weaker, but with all the treatment that is going on, it's no surprise. I can still move about under my own steam, I am still driving, I even managed a brief visit to the pub a couple of weeks ago for an hour or so which was great. However, things can change very quickly.

Another of my "bowelie" friends, Patrick Wymer, sadly died a couple of weeks ago. We knew each other through Twitter and he was an extraordinary force for good. He was diagnosed after me, was a bit older than me and unfortunately didn't respond as well to treatment as I did. He was given his terminal diagnosis last autumn and was doing well but went downhill quickly a fortnight ago and died soon after. It came as a deeply unpleasant surprise to me. One minute he was tweeting about hoping to feel the sun on his head again, the next he was gone. All very sudden, and it illustrates how quickly things can change.

And that's the difficulty. Not knowing when that will happen to me. There are at least two tumours within me that pose a pretty big risk - one in my abdomen, near my aorta and one between my kidney and my pancreas - and if they grow, I am in trouble. That said, the RFA is looking to zap both in the near future which should help. By zap, I mean slow or, hopefully, stop the growth but it's not an exact science and all we can do is undergo the procedure and then hope it's worked. All might then be revealed in a PET scan in late March/early April, I think.

I am not in any cancer-related pain, thankfully. I had some pretty serious sciatica going on which made me move about like an old man and hurts like hell but I am going for an MRI to look at that in the near future (and double-check it is just sciatica) and am hopefully going to see a physio in-between times to ease things a bit. But in terms of pain relating directly to cancer, there really isn't any to speak of.

I have to have twice-daily injections of Clexane, an anti-coagulant to prevent thrombosis and pulmonary embolism, of which I am at higher risk because of all the medication I am taking, and which is delivered skillfully and pretty much always without pain by my wonder-wife, but that aside our day to day life is largely unaffected by medication thankfully. I mean, I take about 10 pills per day, but again, that's the new normal and it seems to work so hey ho.

There is the neuropathy to contend with, which isn't fun, is slowly getting worse and about which there is almost nothing that can be done. Neuropathy is the numbing of the extremities - the soles of my feet and the tips of my fingers. This is due to the Oxaliplatin, one part of my chemo cocktail, so my oncologist altered the levels a bit for the last round to try to alleviate things a bit but she tells me it will get worse even if we were to stop completely at this stage, and it won't get better no matter what we do. It's OK at the moment, I still have sensation enough to be able to feel but it's like wearing rubber gloves on my hands and very tight shoes on my feet. Not recommended. Apparently, acupuncture can help as well so we're going to give that a whirl too.

With the neuropathy, sciatica, chemo and fortnightly general anaesthetic, I am doubtless slower and weaker than I was. Getting up from the sofa, I seem to make noises akin to those of an 80-year-old (apologies to any 80-year-olds who still stand up quietly) and it takes time, but I think this is mostly down to sciatica, and once I am up and about I can move about fairly freely, with the occasional grunt, groan and moan.

My energy levels are generally low so I have to be very careful about how much I undertake in a day, but as I said at the start, and without sugar-coating, I am still ok, all things considered. Physically speaking, I'm just not the person I was. At all.

Oh, and the moon/gerbil face is back. I lost quite a lot of weight in the run-up to Christmas because of the renewed abdominal pain and that helped slim my weird face down a bit, but since then it's returned thanks to my ridiculous appetite and steroids. Hurrah. Not.

Finally, Bekky and I wanted to say a vast thank you again to all those that have contributed towards our mind-blowingly humbling Go Fund Me campaign. Over £12,000 has now been raised which is simply extraordinary. It will be beyond helpful to us going forward and we could not be more grateful.

To illustrate, just since December we have managed to spend well over £1,000 on RFA and its accoutrements alone - trains, hotels, taxis, parking, insurance excesses, etc - which just goes to show how quickly these costs add up, and towards which the GFM fund will be put. It will remove an additional, not to mention unnecessary, level of stress for Bekky and me and will be hugely, hugely helpful. Thank you all again. And please forgive us for not thanking you individually - we hope you understand that life is somewhat preoccupied with treatment at the moment but that doesn't diminish our gratitude in any way.

I'll try to update this blog more regularly in the future - we know there are a lot of understandably concerned friends and family out there so it's only fair to try to keep you in the loop, but in the short term it's a "no news is good news" situation. I love that expression.

Final, final thought...

Everything seems so normal, and yet I am apparently dying. BUT I genuinely don't believe I shall be dying any time soon.

Thank you as ever for reading. And big love as ever from us both.

R&B x

PS CEA levels are actually coming down, which is positive and provides a glimmer of hope. The chemo is clearly doing something. It was at 57 last September, and 50 in December, the latest reading last week showed it at 42. It has fluctuated in the meantime, but the current trend is definitely downwards. Now, if we can just get it down to single figures...

PPS Special and HUGE THANKS for the cakes, the brownies, the flapjacks, the hot chocolates, the company, the putting Bekky-up-for-the-night-in-London-while-I-am-being-RFA'd, the cups of tea, the endless hugs, the dog-whispering services, the kennelling, the cards, the books, the beautiful painting, the cards and letters, the self-care goodies, the easy meals, the messages, the kindness and the care. But most of all the love!! You all know who you are.

All so kind, and thoughtful, and massively appreciated xx

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