Behold, with apologies to the Latin scholars out there, our new motto!  Very roughly translated this means, “achieving shit, despite the shit”.  This was borne out of an intense champagnestorming session Mrs P and I had after she handed in her PhD thesis last Friday.  We are designing a quartered coat of arms which will include a drip stand, a doctoral gown, a rabbit’s face and a vat of wine.

I sincerely hope that this will be the final cancer-related post.  Since my last communication Katie completed chemo, had a mastectomy, a three-week radiotherapy digestif/victory lap and, of course, completed her epic “The Leper and the King” (which I’m sure Waterstones will be stocking in time for Christmas).  Katie’s suffering from chemo side effects, mainly joint and muscle pain and is still getting used to the side effects of oestrogen blockers, which she’ll be taking for the next ten years.  The prognosis is good, the consultant was happy with Katie’s progress when we saw the team in March and we’re both loving the short-haired look.

As for me, it took a long time, but my blood and bone marrow is finally 100% my sister’s, which was the point of the allograft (bone marrow transplant).  I got the call from Lara, my wonderful technical nurse, just as I was coming through the barriers at Reading station on my way to work on a grey November morning to tell me the good news.  That has pretty much been that.  The time elapsed between appointments has grown longer and the length of consultations has got shorter as there’s far less to discuss.

The support that we’ve had from friends and family has been amazing and I’d like to thank everyone for that.  Sadly, I got to know a couple of patients who weren’t as lucky as me and it would be remiss of me not to mention them.  I met Amy Yates through a Facebook Hodgkins Group when we were both on the Nivolumab trial in the Summer of 2015.  Amy had been through ABVD and, after relapsing, nearly died during her autograft treatment.  She was still brave enough, after another relapse, to take the risk of going for a cure by having an allograft with a stem cell donor.  Amy didn’t come out of hospital after being admitted for the transplant and died in ITU in February 2016.  We’d chatted a few times on the ward when I was readmitted post-transplant and Amy was waiting for her pre-transplant chemo to start.  She was unflappable and hilarious – even making multiple attempts to be cannulated funny.

I got to know Claire Owen a little better through a fellow friend and “allografter” Lisa Ralls.  We had our transplants around the same time.  Claire was in and out of hospital for almost six months due to a variety of transplant related complications, but was given the all clear from leukaemia in 2016.  I was losing my mind after four weeks on the ward, so I take my hat off to anyone who has the mental strength to cope with longer.  Sadly, Claire relapsed unexpectedly (even the medical team were taken by surprise) just before Christmas 2016 and, after having the kitchen sink thrown at her treatment-wise, died last September.  She was extraordinary and exemplary.  I was completely intimated, blinded even, by Claire’s good humour and bravery.  Talking to her on the ward or in outpatients during the last few months was like staring too long at the sun.  Last year was neatly, but darkly, summed up by the fact that I missed Claire’s funeral, because I was with Katie at Royal Berks for a mid-chemo ultrasound scan.  That was 2017 – right there.

Maybe it’s impending middle-age, but it seems that so many of our friends are having health struggles – young people have suffered from strokes, mental health issues, meningitis, been diagnosed with cancer…the list goes on.  Another close friend, who we’ve known for nearly thirty years, was diagnosed with lymphoma a few months back.  We have everything crossed for his continued good health through chemo.

As for Mrs P and me, we are going on holiday soon – our first without the shadow of cancer since September 2014.  Our horizon has perceptibly lengthened during the last few weeks.  You spend so long living from appointment to appointment or from treatment to treatment that the concept of a future becomes a foreign concept.  Hopefully, for both of us, there’s a bit more future to come.

I don’t know what it is about Wednesdays.  I took my usual two trains and a bus to the Churchill in Oxford today for a consultation.  This was a cursory once-over, chat with the clinical team and blood test before I receive the next load of cells from my sister next week.  They like to give you a clean bill of health before injecting you with any foreign matter.  Then, as if part of some crazy charity challenge, I drove, after a couple of hours at the office to raise team morale with my usual sparkling wit and repartee, to Bracknell to collect Katie after her fourth round of chemo.  If anybody remembers those saccharin “Love Is…” cartoons from the 70’s, then, for us, “Love Is…being in different cancer hospitals 35 miles apart”.

Katie’s day started earlier than mine with a blood test at 8.30 in Bracknell to ascertain whether she could have chemo today.  A couple of blood counts from a test earlier in the week had looked a little on the low side so there was a chance that chemo would be postponed.  Of course, it’s all relative and I scoffed at the meekness of delaying treatment with a neutrophil count of greater than 1.  Greater than 1?  Try walking around for 6 months with a score of 0.3 – that sorts out the men from the boys.  If sorting out the men from the boys is avoiding as much human contact as possible, going through vats of anti-bac hand gel (sensitive) and yelling “don’t breathe on me I’m immune suppressed!”.

Katie has stood up well to treatment so far.  We’ve had to make some adjustments at home, I do most of the catering, cleaning and bunny care these days.  In the past, at least since my career break post-treatment, I have done most of the bunny care, catering and cleaning.  I’m sure we’ll get the hang of the seismic changes to our routine eventually.  The only really bad side effects Katie’s suffered have been insomnia, nausea, fatigue and inflicting Bon Jovi on her Facebook followers for 63 straight days (and counting) by posting a different song every day since treatment began.  It’s been a unique way to share the suffering.

The good news is that Katie’s first scan since treatment started showed a reduction in the tumour in her breast.  The radiology team inserted a marker yesterday which lets them identify the location of the tumour making it easier to spot in subsequent scans.  The other good news is that my blood scores, after 18 months of stubbornly refusing to move have suddenly sprung into life.  My chimerism, or the percentage of blood in my body produced by my sister’s bone marrow, which had been hovering around the 40% mark, is now at 60% which is good progress and a huge relief.  The point of the bone marrow transplant is to get to 100%, giving me a new immune system which should be better equipped to deal with a return of the Hodgkins.  The two results (Katie’s scan and my bloods), or at least the process of getting those results encapsulate the uncertainty of living with cancer or its aftermath.  You go for the scan, try to ignore the subconscious build up of tension while you wait for the results and then, hopefully, experience the huge rush of relief when the results are what you were hoping for.

I’m hoping next week’s dli, or top-up of cells, will be my last and I’ll hit the magic 100%.  Chemo-wise Katie’s now in the finishing straight.  All being well with blood counts she should be finished 6 weeks today.  Katie well then get a few weeks of respite while she recovers before surgery.  There will no doubt be a post surgery recovery period, but with luck, treatment for both of us will be finished by the end of this year and we can start to look forward to a cancer free future.

We’ve tried to enjoy the days between treatment when Katie’s felt well enough to get out and about and experience some vinotherapy.  It’s inevitable that cancer, at best, puts your life on hold, so it’s important to minimise that as much as possible by making the most of the good days.  But then, I suppose we should all be doing that anyway even on days spent shuttling between different hospitals.  I’ve got to know some great people over the past couple of years, who’ve had a variety of different blood cancers – some we’ve lost already and some who won’t be with us for much longer.  I think of them all a lot and, perhaps, those of us who’ve made it this far through treatment, or post treatment, owe it to all of those who haven’t or won’t make it, to live life that bit better.

Well it’s been a while, over a year since my last post in fact.  That’s largely because there’s not been much to post about.  I’ve settled into a routine of monthly clinic appointments, quarterly treatment, quarterly chimerism blood tests and quarterly disappointment when the blood counts haven’t moved.  If you recall, the reason behind my allograft was to replace my immune system with my sister’s.  So far, that’s only been partially successful.  My immune system, which was crap for dealing with Hodgkin Lymphoma, seems to be pretty effective at standing its ground against the initial onslaught and regular reinforcements of my sister’s.  It’s like the great Lego war of 1975.  As I type only 41% of the white cells going round and round in my body are my sister’s.  Establishing these numbers is a pretty tricky process.  The blood tests take 3 weeks in a laboratory and involve extracting dna from the blood cells.  It’s all pretty clever stuff.

To try and shift the numbers north I’m back in July for another 30 million cells.  To date I’ve only had 14 million across three quarterly infusions, with the dosage going up in multiples of 3 each time.  The last dose will be in October unless I hit the magic 100% mark by then.  After that I’m out of cells and we’ll just have to hope the numbers creep up on their own.  Reaching 95% is important, because there is a 10% difference in the chance of relapse between ‘mixed chimerism’ and being totally donored up (to use a technical term).

So what else has been happening?  Well some of my friends from clinic have gone from strength to strength while others haven’t been so lucky.  The first lady I met on the Nivolumab trial back in the Summer of 2015 didn’t make it through her allograft and I know a few others who are waiting on trials having exhausted all of the established routes to remission.  I think of them all a lot.

The good news is that today NICE licensed the use of Nivolumab for use in treating post autograft (bone marrow transplant with your own cells) Hodgkins Lymphoma.  It was great to be involved in the trial and I like to think that I made some small contribution to the treatment of other patients in future.  Immunotherapy drugs such as Nivolumab would seem to be the way forward and it feels like we’ve really taken a giant stride in tackling a variety of cancers with Nivolumab or Nivolumab variants.

The totally shit news, and I sincerely apologise if this comes as a shock, but we’ve not got around to telling everybody yet (because that in itself is an exhausting and stressful process), is that Katie – presumably not wishing to be left out – was diagnosed with breast cancer a couple of weeks ago.  We seem to have caught it quite early and the prognosis looks good, but it will still mean 4 and a half months of chemo, maybe radiotherapy and definitely a mastectomy at the end of it.  The process from gp appointment to the appointment with the oncologist next Tuesday has been admirably quick.  The only issue we’ve encountered so far has been poor expectation management.  We saw the surgery team at the Royal Berks first and they told us last week that a mastectomy on 12th June and maybe some radiotherapy would do the trick.  At that point chemotherapy was definitely off the table.  So, to be told a week later that the oncology team were recommending chemo was a shock and, as Katie said, made her feel worse than the original diagnosis.

So, we have another challenge ahead of us.  Katie has already started playing the cancer card because, she “learned from a master”.  I thought that was harsh, but probably fair.  I know few people better equipped to deal with this than the Mrs.  She made it up to Glasgow for a good friend’s wedding, despite the post operative pain she’s still having, by courageously and selflessly drinking through.  The shock of diagnosis was assuaged by a swift course of vinotherapy.  I can’t pretend I wasn’t walking around in a bit of a daze thinking dark thoughts for a while as I tried to get my head around what was going on, but I will say that our experience with my cancer has helped us dealing with hers.  We know our way around a hospital, we know what an mdt meeting is, we know how important your clinical nurse specialists are and we know that life is never quite the same after a cancer diagnosis.  But we also know that cancer can be beaten (even after a couple of score draws) and, most importantly, we’re a formidable time when the going gets tough.  I’m sure my lovely wife will be up and about at full strength long before my cell count hits the 100%.  Who knows where fate will take us next, but to quote one of Katie’s favourite bands:

“Who knows what tomorrow brings

You might be dead

Might be a king

So let’s have ourselves a party along the way”

One of the most frightening memories of my childhood…and there were a few…finding out my dad was a Charlton fan for example…was an incident at St Giles’ Fair in Oxford in 1981.  James Steel, my sister and I had paid our ten pence and ventured into the inky darkness of the House of Horror ‘attraction’.  I don’t remember much apart from being at the back of the trio and encountering the terrifying banshee that was my sister screaming, arms twirling as she hurtled back towards James and me like a bowling ball.  Clearly we were brave making the only girl, two years our junior, go in first.  We made quite a sight re-emerging from the entrance at top speed.  I’ll never really know what she saw in there.  The family never speak of it more than thirty years on.  I’m pretty sure we didn’t get a refund.

Creeping around a House of Horror, wondering what’s around the next corner, aptly describes my current state three months post transplant.  You never quite know what life has in store next.  The really good news is that last week’s scan is still showing complete remission, but the white cell and neutrophil counts remain stubbornly low leaving me open to infection.  That tied to the fact that the immune suppressants are being cut means that the good ship Andy is being navigated between the Scylla of infection and the Charybdis of Graft versus Host Disease (or GVH for short).

This illustrates one of the fundamental weaknesses of cancer care and points to the next stage in its development.  Yes, a lot of what we can do now is fantastically clever, but the range of outcomes seems so random that it’s surprising that treatment isn’t yet more tailored to individual genetic make-up or need.  Essentially treatment at the moment is a sausage factory.  If you’re looking for a cure after initial diagnosis for late stage Hodgkin’s then the standard of care is for everybody to get ABVD chemotherapy.  Some people respond, some don’t, some get really ill, some don’t, but none of that data seems to be captured and put to good use.  That means we presumably make the same mistakes over and over and at every single stage the doctors simply can’t give you any indication of the answers to the two questions that concern most patients before a regimen: 1. Will it work? and 2. Is it going to make me feel vile?

I, for example, had a relatively ‘easy’ time during the Nivolumab trial that resulted in remission, but I know somebody who didn’t tolerate it at all and ended up having to abandon the treatment.  I’m sitting here feeling relatively healthy given the stage I’m at – 90 days post allograft, but that same person is currently just re-emerging from an induced coma in intensive care following their transplant and has a real fight to survive ahead of them.  They will certainly be in hospital for some months.  Is medical science not yet advanced enough that it can somehow predict the outcomes?

There are limited criteria used before a course of treatment is prescribed, but those are largely limited to the staging of the disease as I referred to above (basically how far it’s spread) and the age and current health of the patient.  It’s a little bit like that scene in Blackadder II when Edmund visits the doctor who prescribes a course of leeches for everything, “I’ve never had anything that you doctors didn’t try to cure with leeches”.  And yet two hundred years before Christ, Galen was at least having a go at an approach to medicine based on individual human temperaments or the ‘four humours’, a system which suggested a connection between personality and physiology.  I mean it turned out to be bollocks, but fair play to him for trying and he was a visionary in many other aspects of his approach to understanding the human body.

So, the best that the medics can do is offer reams of potential side effects, tell you not to eat runny eggs or black pepper and give out a load of outdated survival percentages.  In theory the odds of getting through the first year post allograft are about the same as surviving a game of Russian Roulette.  Given the choice between that and a course of treatment, well hand me the revolver.  I don’t say that lightly and I don’t say it for dramatic effect.  For anybody who survives the disease and treatment, and I fully expect to do both, none of us gets the time back.  Cancer takes a lot, but what it takes the most is time.  If it doesn’t shorten life then it at best puts in hold for both the patient and the patient’s loved ones.  It casts a long shadow, at least for a while.

I’ve been listening to Warren Zevon a lot recently.  He died of cancer back in 2003.  A year or so before his death he appeared on the Letterman show, already terminally ill, but still able to perform.  Letterman asked Zevon whether his situation gave him a unique perspective on life that meant he could offer some wise words to the audience.  Zevon paused and then said, “Enjoy Every Sandwich”.  This is advice, as my expanding waistline will testify to, that I’m taking literally.  I may not know what’s around the next corner, or what lurked in that dark nook of St Giles’ fair thirty years ago that so terrified my sister, but I have an excellent grasp of what food’s in my fridge and don’t plan on wasting any of it.

So, since being discharged after my stem cell transplant, I’ve been readmitted to hospital a few times.  Not so much a salmon returning to spawn, more a malingerer returning to whine a lot and watch the clock.  The problem is that, post-allograft, you’re a slave to your thermometer.  You have to take a temperature four times a day and when it spikes (goes above 37.5 degrees) it means a call to the hospital for instruction, which usually involves charging back at some ungodly hour for an antibiotics blitz and a load of blood tests.

So far, each visit has been an almost embarrassing non-event.  The temperature usually returns to normal fairly quickly and none of the blood tests have shown anything interesting.  It’s a bit like having a car problem which immediately disappears as soon as you get it anywhere near a mechanic – “honestly mate, it was making this terrible rattling sound this morning”.

To quote Ben Elton from his angry-young-man days, there was a “little bit of politics” involved during one hospital admission.  The triage team at Oxford, my first point of contact, sent me (against protocol as it turned out) to accident and emergency at the Royal Berks in Reading, which is my local hospital.  What should happen within 100 days of a transplant is readmission to the centre that carried it out.  The team at Reading was very professional, but clearly wasn’t that overjoyed with Oxford.

The good news is that since having my Hickman Line removed a couple of weeks ago the temperatures are now behaving themselves, which makes readmission look a lot less likely.  One thing that these unscheduled visits did remind me, as if I needed it, that there is always someone worse off than you and yet I marvel at people’s fortitude and humour sometimes.  During my visit to the Royal Berks I was on a four bed ward with a couple of older gentleman who were, sadly, nearing the end of their lives and a guy in his early 30’s.  The young chap looked as though he was being eaten alive by cancer, had had a leg amputated and a colostomy back and was still undergoing radiotherapy.  He had a two year old child and neither he nor his wife had any family close by as they’d met at Reading University and settled in the area.  He was chatting about his family situation with one of the nurses and it transpired that he had a twin brother.  “Oh” said the nurse, “are you identical?”.  He paused and with a twinkle in his eye said, “Well…not any more”.  I take my hat off to you sir and wish you all the very best for your treatment and recovery.

As for me, it’s a case of waiting for the new immune system to bed in.  The blood counts have held up for the past couple of weeks (albeit I’m neutropenic again – rather irritatingly), which suggests that the new bone marrow is working.  I’m still on a bucket load of drugs (medicinal not recreational) and am being seen every Wednesday in Oxford at the Haematology outpatients clinic, but the past few weeks have been pretty uneventful and the consultations blissfully short.  Which just leaves me to say thank you to everyone who’s supported Katie and me over the past year – you know who you are; friends, family, colleagues, the medical teams both at Oxford and briefly at RBH (happy to report the Reading team was also excellent) and to wish everybody a happy and healthy 2016.

Of course any support in times of crisis is crucial, but that’s particularly true when it comes to one’s spouse.  The problem is that with each relapse and each round of chemotherapy what I can only describe as ‘cancer fatigue’ has set in.  My feeble cough, followed by a weak look in the desperate hope of some small flicker of sympathy now serves only to antagonise.   Admittedly this might be something to do with the timing.  The cough only seems to come on within seconds of being asked to do something.  I haven’t asked my consultant about this, but then I forgot to ask him whether I’d need another bone marrow biopsy yesterday.  Funny that.  Sometimes it’s nice to collapse into the loving embrace of denial.

So, the phoney war is almost over.  The Nivolumab has done the trick.  The final session is at the Churchill on Friday and undoubtedly the team there will be bidding me an emotional farewell.  I have a date of 12th October for hospital admission and 21st October for the donor transplant, which will happen after 9 days of conditioning chemo.  I spent yesterday having heart and lung tests to see if my body can take the punishment and also to provide a set of base line readings that the medical team can use should I encounter any unforeseen problems during the transplant process.  My sister, who is kindly donating her cells to me, had a similar series of tests today to ensure that she has a clean bill of health.  Pending final blood test results, we’ve both passed and the route is now clear for us to get on with the fun part.  For my sister that means having her cells harvested and for me that means 5 to 6 weeks of incarceration while the medical team keep infections at bay and manage the progress of my new immune system.  This will be followed by many months of recovery and probably an awful lot of whining and, finally, wondering where my wife has gone and whether she’s taken the joint credit card.

I have now signed the consent forms, so there is no turning back.  As I may have mentioned in a previous blog there is, in theory, a choice at this stage.  I have no ‘avid cancer’ in my body now, so am technically in remission, could carry on without the transplant and hope not to relapse again or I could go for a cure now.  The ‘cure now’ path consists of the transplant and while the reward is getting rid of the cancer once and for all the risks are that the treatment itself could be fatal.  The two key dangers are infection, due to having little or no immune system, or graft versus host disease where the donor cells take something of a dislike to the ‘host’ body’s organs.  It’s always slightly sobering to be presented with mortality rates, but we’ve admirably dealt with that by ensuring that we’re ‘unsobered’ not long afterwards.  Perhaps it’s the vinotherapy, rather than the Nivolumab that has put the Hodgkin’s to the sword?

So, Katie and I are facing the next 6 months or so with a kind of grim determination.  It’s going to be rough, there’s not doubt about that.  The autograft I had in 2010 was the most physically difficult thing I’ve ever had to deal with and a good deal of the conversation with doctors and nurses over the past month or so has served to underline the fact that the allograft will be a more difficult experience and will involve a much longer recovery period.  This is partly due to the three month course of immune suppressants post-transplant that will keep the incoming immune system in check.  There are some cool bits – I’ll be in a pressurised room, so I can spend the entire time in hospital pretending I’m in a space station, an illusion helped, no doubt, by the fact that I’ll be on a mainly liquid diet after a couple of weeks of chemical bombardment.  The pressure maintained in the room stops the air whooshing in when the windows and doors are opened, hopefully keeping any nasty bugs at bay.  I requested a room with a view this time, which at least raised a smile by the doctor.

So, my lovely wife will at least get 5 or 6 weeks off while I bitch and moan and thrash about on a plastic mattress in Oxford and generally drive the nurses round the bend.  I’m not sure whether I’ll be capable of writing too much while I’m banged up, so in the words of Jim Lovell before Apollo 8 disappeared behind the moon for the first time, “See you on the other side” (I mean after the transplant of course….nothing more metaphysical than that).