Keep Rhys happy healthy and at home
Hey, my name is Rhys. Until recently, after a bunch of years working as a teacher in China and nursing my grandmother in South Wales, I was cheerfully living in central Manchester, UK, managing a bar in the city centre and proudly watching my girlfried sail through her degree with first class honours.
Alas, our celebration of her recent graduation and hopes for the future ahead of us have been dampened by my recent admission to the city hospital. What were originally merely sore legs, put down to the work I was doing, has developed, quickly and surprisingly, with each new diagnosis more bizarre and eye brow raising.
Last week I was informed that my chest cavity is unexpectedly full of malignant cancer cells. So far doctors are unable to tell me where the cancer has come from, only that it has developed enough to spread to my lungs and is probably inoperable and incurable. It's a glacial slow one, which I guess is both a blessing and a curse. Whilst my previous good health and unusually young age for diagnosis mitigate against it, the outlook's pretty bleak, and there's no doubt I'm going to get pretty damned sick soon.
Work is obviously no longer an option, so I've had to reluctantly "retire" for now, leaving my beloved Rhea and I reliant on her Teaching Assistant's salary, loans and the goodwill of our friends and family. After so long spent studying and getting ourselves ready for our post-study lives, our savings are very meagre, to say the least.
Even were the experience of suffering cancer itself not to prove expensive, this is clearly not a viable situation long-term. Many of the friends that I've made from around the world over the years have asked how they can help, and we came across this site, so we are putting our pride aside, picking up our faith in the awesomeness of people and trying this out.
Many thanks for all the support and lovely responses since the last update!
I'm glad to say things are looking pretty positive right now.
After a seriously nail biting week, we now know for certain that the two anticipated disability allowance cuts (yes, two separate benefits, ESA and not just PIP) have been firmly shelved. They would have instantly ruined us, quickly frankly. Cheers Dave and George. Never thought I'd be toasting IDS.
I spent a significant chunk of the last two days down at the Christie, getting my chemo on. All the usual delays, discomfort and frustrations, and I'm feeling pretty rubbish today, but it did come with some silver linings. My platelet count remains high, bordering on normal health range, so my mobility is returning as the sort-of-DVT eases, and my next treatment was successfully postponed until late April. Why? Because we're going to be busy getting married instead! Huzzah!
It's total chaos, putting it all together in just a few weeks, even without feeling like pants, but friends, the charity and its suppliers are being total heroes, throwing all sorts together for us. Memorable isn't going to even begin to describe it!
Lots of folk have been asking how they can help. As ever, it's much appreciated! Aside from the obvious support through this website, that I garbled on about in my last update, the best way is to Share this update, from my Facebook profile (not inside the "Rhys Kicks Cancer" group, if you're a member) . I'm loving the "likes", it's brilliant to know I'm being read and see people's responses, but moving that ol' mouse icon a few pixels over to the left to hit Share instead/as well will send the fundraising link out to new folk, rather than to those already in the loop, and really makes a huge difference.
Some suggestions for a witty groom's speech might be good too :p
My poster designing has been slightly way laid by fittings, chosing flowers and wotnot of late, but I am working on it, I promise!
Hopefully get a less chemo-codeine-steroid addled update out to you all again soon. Smaller and more frequent ones my aim!
You may recall the one thing on my "bucket list" was not to jump off the Chrysler building dressed as Snoopy, or any other random thing I had no desire to do in normal life. It was to marry my beloved Rheabobs, something ever so normal and in some ways mundane, before illness reared its head. With this in mind, we started to look into blessings. I contacted a charity that organises weddings for croakers like me. Would you believe, they said they'd help with the entire shebang! Overjoyed, we started to make plans, look for venues, choose dates, all that grown up stuff. Within days we'd been offered a venue and ceremony package that I could only describe as beyond our wildest dreams. Indeed, those of most people. All we'd have to do is supplement it a bit, a small thing to celebrate our life together, what ever it has brought and will continue to throw at us.
Then, disaster. The charity can only help full weddings. Recalling the alarming information we were given by an adviser just after my diagnosis, when we mooted the impact of being married on my financial support, it seemed we would have to call the whole thing off, unless I was prepared to lose nearly every penny of state support I now receive. We could afford to get married, thanks to the charity, but not to be wed. Yet more head spinning. Another update draft bites the dust.
With an air of quiet desperation and stubborn unwillingness to let this one of a kind opportunity pass, robbing me of my single simple desire for the future, I started to inquire again in more detail, keeping the details sketchy with benefits authorities - I needed to speak to them in any case as my Statutory Sick Pay has now come to an end.
No matter how cruel or parsimonious our government may appear at times, my scepticism at the original information we were given proved founded. Marriage would not effect my entitlements in any way shape or form. Co-habitation would. Indeed, being married would to some extent actually help in the really long term, in terms of the additional financial and legal securities that it would provide for Rhea when I finally turn up me toes, none of which we'd get simply by living together. Living apart as time goes on is simply unwelcome, as a matter of course, as a normal long established couple, never mind considering the possible futures my condition may bring. With living together inevitable (and of course desirable!) but potentially seriously punitive, I re-examined the outcome of being married or just "in digs".
And you know what? The initial advice was all bollocks. Well, pretty much.
Yes, I would take a welfare hit in living with a partner, wed or otherwise, but nothing like the poverty-inducing destitution during terminal illness that had been suggested. Only one of my benefits is truly means tested. In light of Rhea's income, we might be looking at taking a dramatic but not devastating hit of several thousand pounds a year for living together as I ail.
Which is all a rather long winded way of saying that we're going for it, with all the celebration and protections of wedlock. There is no way we can spend what ever time I have left apart. Registry office notices posted, venue accepted, charity on board, arrangements being steadily put in place for a Vegas style "Us and two tramps" registry office gig in the first week of April, followed by a traditional friends and family ceremony in the second week, thanks to the donations of some truly amazing wedding industry firms. In just one month! Cor blimey!
And here, my dear friends, is where you come in. As I said, we can afford to get married thanks to this help, but not so much to be wed or even live together. Nearly one year ago we asked for your support, and I admit I must now do so again.
At least now we have a distinct aim or target, an objective and purpose to this fundraising - to allow us to live together, for however long or short a time as fate may decide it is to be, as a normal everyday couple. We're not talking swimming with dolphins in the Bahamas, just the ability to be together day to day as I approach the inevitable horizon of my expiry without the panic of how to pay our next rent.
With your help we can evade the brutal edge of my welfare being cut. Please, anything you can do to help fund raise, it would mean so much. Not just donating, but sharing the links on Facebook, putting up posters linked in the group, running an event in support, everything is going to help.
Oh my goodness, four months! How on Earth did that happen?
I do have an excuse. We've had months of head spinning U-turns and changes in direction. I have drafted more updates than I can remember, only to have life dash in and side swipe us, rendering the update obsolete even as my finger hung above the "Post" button.
So much to recall...
My last chemos in November and December were routine in themselves, but I picked up one of the seasonal bugs flying about. What I wouldn't have even noticed previously floored me. It was mid-January before I was back to myself. Whether that's the weakness in my chest or the immuno-bashing effect of the chemo, I have no idea. Not fun times.
We knew from the start that I was only scheduled for six "full blasts" of chemo, ending around December, despite it having had a massively positive effect on myself in particular. The cost-benefit balance would have started to shift. The toxicity would have been too onerous to carry on past that point. We expected these blasts to then be replaced, after a treatment break, with something termed "Maintenance Chemotherapy". Basically a lighter version, of indefinite duration. It would not seek to shrink the tumours, but it would hopefully hold them in place into the distant future, until resistance to treatment kicked in and I started to decline.
Just before Christmas we were told that this would not be an option. Essentially all chemo and treatment was over. It felt like we were told to go back home with pockets full of pain-killers and to make the best of it. Not at all fun news; not one I was going to spin an upbeat update out of. We were no longer facing possibly my last healthy, active festive season, but a looming change in my condition. A race to make the most of every moment possible, you might say.
Alongside, some quirky psycho-somatic-ish effects started to appear. Whether an effect of the tumours, the drugs or just the immense building mental and emotional pressure, we had no idea. Sleeping fits, nervous shakes, colossal mood swings, all sorts. It was rather odd, scary and unpleasant for me, and anyone else within my sphere, I have no doubt.
Unsurprisingly, I got whisked for a bunch of scans on my bonce to check that the tumours hadn't spread to my grey matter, by way of explanation. It remains an ever present threat. Scary times, indeed.
All the while battling the DWP to get my benefits settled and trying to organise a now a very important Christmas. Wa! Who thought retirement could be so stressful?
Christmas and my birthday were surreal, bitter-sweet but full of good times with great people, celebration rather than maudlin navel gazing. I am lucky to have such support around me.
Then, all change, another turn. After New Year, we met my consultant. She announced that the brain scans had come back clear. Stress, medication and lifestyle all seem to have been at cause. Without time to even blink at this she announced with glee that she had permission to put me on Maintenance Chemo. Straight away. Time to grab my evidently healthy but seriously spinning head, pin it back down and get ready to start treatment all over.
This brought some ambivalence. After the break I was feeling better than I had in perhaps a year. What I might describe as how I remembered "normal" to be. Maintenance was going to bring back all the side effects - hair loss, metallic taste, incontinence, disrupted sleep and appetite, aches, constantly feeling like having a congestion-free flu, stacks of tiny changes we don't otherwise hear about. Like the glacial weight gain of middle age, I hadn't really been aware of the slow build up of treatment side effects, imagining myself almost unaffected, until they were gone and assumed over-with.
However, it could potentially add many months to my life - my body recovered far better than expected during my "treatment break". Once again I am defying expectations, albeit in a good way. Talk of "Next Christmas" and other long-term plans no longer feel like pipe dreams any more.
Of course, the ultimate diagnosis hasn't changed. One day the cancer will resist the chemo and then we're talking a much shorter duration. How long, who can say, probably weeks. We don't know how aggressive this kind of cancer is for someone of my age and previous good health. But it is going to happen, this is my twilight. I, indeed we, need to prepare and reconcile ourselves with this. Heads in the sand denial or excess optimism are not the order of the day. Not that I am maudlin, I am "Living With", not "Dying Of", celebrating the life in the years, not the years in the life.
To be continued...
Sorry it has been an age or three since the last update. Recent chemo cycles have proved to be rather harder than the first few, absolutely knackering and much longer in effect. Think flu without any congestion for a fair few days. Even when feeling better, motivation, concentration to sit looking at a screen (rather than get out and enjoy sunlight) and any eagerness for more "cancer-talk" is somewhat slower to return.
But it's not all bad. Chemo has been but one element of delay. So many other great things have gone on too:
- The benefit party at work was a great success, raising loads, quite simply keeping us afloat and giving us an opportunity to catch up with stacks of long unmet folk.
- My old boss kindly offered us the use of his cottage in western Scotland, opposite the Isle of Bute, before Rhea had to go back to school with the new term. Cue epic road trip, some staggering views, and a week of blissfully quiet nights sat by the loch or the coal fire, thinking nothing of hospitals, treatment or the city grind. Heaven!
- We got engaged! Wahoo! Sat by the loch outside the cottage, sipping fizz and watching the sun go down, on our last night before our return to Manchester, it was splendid. I'd been carrying the ring around for some three weeks already, waiting for the right opportunity, so if that wasn't the time...
- So an engagement party was an absolute must! We took over one of our favourite venues for the day, and got spoilt rotten. Now we've the big day proper to plan!
Since then life has, inevitably, returned to normal routine. Rhea wakes me early in the morning to jab me with a needle before departing for school, I eventually get up and potter around the house getting stuff slowly but steadily done, and we try to make as much of free time together as possible, punctuating our weeks with the occasional soiree out and about (last Saturday's two back to back charity functions raising money for the Christie and then St Mary's Neo Natal Hospitals were absolute blasts, exhausting but awesome).
Last Monday was my final review with my consultant after the initially planned chunk of chemo. I have had a review after each cycle, but being the last scheduled cycle, with a couple of CT scans under my belt to track progress, it was always going to be more significant.
The grand news is that the treatment is definitely working, indeed, much better than they had anticipated. Both the primary tumour and the identified secondaries in my pleural cavity and rib cage have all shrunk noticeably. Hurrah! Without being tempted into Disney level realms of miraculously cured fantasy land, this is a great result. The initial prognosis is now looking, although is still stands, rather pessimistic, in its duration. It will still bump me off, ultimately, but its going to take it a lot longer and going to have to work a lot harder to do so. Don't take me off your Christmas card lists just yet.
Lack of massive side effects and the good response mean that they have decided to bolt on another two cycles, keeping me in chemo-land until around early December, shrinking the blighters as much as is possible. At that point we have no choice but to take a break from one or both of the chemo drugs, as they're just too toxic for sustained use. I might carry on with just one, the more benign for a few months, who knows. They'll decide at the review in six weeks. It does come with the very real world complication of cost. It seems the NHS doesn't always automatically fund the "friendlier" drug being administered on its own, so it's uncertain on that front too.
Still, the treatment will resume at some point, and it works, for the moment pushing back the primary growth and subsequently reducing the chance of secondaries forming. I say for the moment as, eventually, resistance will kick in, and it just won't work any more, leading to my becoming a lot more symptomatic. Maybe there'll be alternatives, maybe there won't, who knows.
In the meantime there is a bit of muted concern about secondaries. This is, of course, the big difference between stage 3 cancer (primary only, perhaps treatable with difficulty) and stage 4 (wee lil colonies occasionally whizzing off, each with their own quirks, on top of the original ring master) as far as I understand it. In theory a reduced primary reduces the chance, but I could develop new secondaries at any time. These may or may not be aggressive, and may or may not be effected by the treatment. If they are, all well and good (ish). If they're not, well, that might be a different story, and the colony becomes the bigger issue than the shrunken progenitor. It's all very like the British Empire inside me!
So, good news, but with a hefty dollop of reality as garnish.
But, we've a wedding to plan! Wahoo! It might be a wee while away, but I'm pretty sure I better start working on a speech already. I'm a typer, not a talker.
Thanks to you all for your support, as ever. You're all total stars!
Hi Rhys, I just read your story. I just wondered if this info might be of any help to you. I read it in tuesday's daily mirror 31/5/16. Long story short. Man diagnosed with skin cancer which had spread to his chest given months to live. Experts gave him two types of immunotherapy. 5 years later he is clear. He was treated at the Fred Hutchinson Cancer Research Centre in Seattle Washington, regards, Lee