Fixed with Gold

I’m aware that its been over 5 months since I last published a blog post.  I can’t tell you the number of times I’ve sat down to write, yet I’ve not been able to bring myself to type a thing.  But yesterday, something happened.  Something that reminded me why I started this blog, its purpose, and what I ultimately hoped it might achieve in some small way. Someone approached Pete to ask about a loved one, who was displaying some of the symptoms that Pete did in the early days prior to his first diagnosis.  They had read this blog and after speaking to Pete, were going to encourage their loved one to see a doctor. Many things have happened since Pete began his transplant in January; things that have been wonderful, things that have been terrifying, things that have been unexpected.  But that is the thing about the world.  Everything goes on, and it is hearing something like this that has reminded me why I started this blog, and how hopefully it will serve a purpose to help someone other than ourselves.  

I have thought hard about what I feel I can write in this post.  Many of our memories of the transplant process are just too raw to go into just now - maybe one day I will be able to go there, but just now that box remains closed. I will say however, as I’ve said many times before, the NHS and the staff who work within it are quite simply outstanding, and I know Pete and I have been deeply humbled by fantastic care he received while he was in the Bone Marrow Transplant Unit at the Queen Elizabeth Hospital, and the care he has subsequently received at FVRH since he returned home.  Many of you will have seen the video of Pete arriving home to the kids – one of the very best moments I have ever witnessed and something we will all remember forever. While he was in hospital, I was also sent a huge number of video messages from friends, family and colleagues, all beautiful humans, which I was able to pull into a compilation for him to watch on some of his darker days.  I can’t tell you the number of nights I put the kids to bed and sat and watched those clips over and over, and how much comfort they brought both Pete and I during the weeks he was in hospital.  

Pete returned home on 24th January, and on the whole, his recovery has been fairly straightforward. The first few weeks were spent mostly sleeping and trying to get his strength back.  Pete had lost over 2 stone in weight and one of the side effects of all the chemo he received was significant muscle wastage, so much of the past 4 months has been spent slowly building up his fitness.  We were absolutely delighted that he was well enough to attend my brother and sister in law’s wedding in February, and we even managed 4 nights away to Loch Long with the kids at the beginning of March before I returned to work.  We found out at the end of April that the transplant had been successful, and he was is remission, which obviously we are delighted about.  Remission after relapse is a scary place to be, however.  While you are elated with the news that the cancer has gone, you are also held in a weird emotional prison, scared to get too excited in case the rug is pulled out from under us again.  We always knew this would be the case, and we are not letting it hold us back, but it is something that niggles at us both.  But as time goes on and as each positive check up goes by, the fear subsides slightly.  We know it won’t disappear, but each day is a day closer to full recovery, and that is a good feeling.

It’s a difficult thing, to decide how to document what is happening to us at the moment. Part of me hates talking about it because it feels, in my perspective as a wife and carer, that it comes with the stigma of ‘having cancer’ attached to it, and that can make some people uncomfortable. I also feel the overwhelming need to protect Pete during everything he is going through.  But the other part of me is desperate to fill the void that exists for people who are going through this with the reality of the situation from a first-hand perspective, and this was one of the reasons I started this blog.  To say the things it was difficult to say without having to worry who I was going to upset by saying it, and to get off my chest things I don’t find it easy saying out loud.  Writing has always been my vessel for this.  It’s fairly easy for me to appear stoic (thank-you Borrowman family genes!) but I can quite honestly say, this is the toughest thing our family has ever had to go through.  

Pete was admitted to The Queen Elizabeth University Hospital on 3rd January.  We were so fortunate to have had a fantastic family Christmas and other than him having his Hickman line fitted to his chest on the 27th December, the festive period was largely spent out of hospital. The way a transplant works in day terms is rather like a morbid countdown. Admission day was day -7, and he would receive high dose chemotherapy every day from day -6 to day -1. Transplant Day is then Day Zero, when he receives his stem cells. Every day after that is a plus day and all going well, we would hope to have him home on or around day +21.  The past 7 days have been up and down.  The chemo has been long, and tiring, sometimes lasting 14 hours,  however Pete has been in really good spirits. It’s been incredibly hard for him to be away from the kids and me (and the dog!) but fortunately he’s been well enough to have visitors, which passes the time for him in-between treatments.  Today was his last chemotherapy, and the nastiest one apparently. Part of the side effects are that it burns the inside of your mouth, therefore Pete had to consume 10 ice poles one after the other during the hour of treatment……every cloud and all that!  

While Pete has been in hospital the kids and I have been adjusting to our new routines. Children have the most incredible resilience and our two make both Pete and I proud every day.  They have been in to see Pete and FaceTime him every night, and though they miss him desperately they have taken it all in their very little strides with extraordinary maturity and bravery.  I am not currently at work, and other than a few tears and some minor wobbles, we are largely doing well.  Saying goodbye at the end of a day is incredibly hard and there are days when I feel very strong, and some when I don’t feel brave at all, but we are taking one day at a time and that is OK.  We know from speaking to the doctors and nurses that are looking after Pete, that the following 3 weeks in hospital will be the most difficult.  Whereas just now Pete is feeling pretty well and able to have visitors and get up and about and out of his room, by next week the cumulative effects of the chemo will hit and his blood counts will fall to zero, and he will become very unwell.  The side effects of the BEAM regime he is on are extreme and will only begin to ease once his body begins producing its own red and white blood cells again, most likely within 10 to 14 days post-transplant. During this time he will receive a plethora of medicines and blood transfusions but the medical team in the unit are excellent, and will provide him with all the drugs he needs to stay as comfortable as possible throughout the difficult period.  

It’s taken me a long time to gather my thoughts and sit down to write this next blog entry.  The past 8 weeks have been incredibly surreal, mostly because we’ve been stuck in a horrible limbo not knowing what path we were going to follow.  Thankfully things are much clearer for us now, and although the route is going to be difficult, we finally know where we are going.

Pete began GDP chemotherapy on 18th September, exactly one year to the day he received his initial diagnosis. The irony of this is not lost on me. We had planned to celebrate a year from diagnosis with some champagne, not a chemotherapy cocktail, but life has a funny way of throwing you a curve ball when you least expect it.   GDP has been a much harsher regime than the ABVD he was on last time, and the 3 week treatment blocks have been incredibly hard.  He receives around 8 hours of chemotherapy on day one, and another 2 hours on day 8. The days in-between have been spent mostly in bed and usually only by around day 10 is he able to get up and about with ease.  We always knew this was a much more aggressive regime but have been thrown by simply how much harder it has been.  But then no-body said it would be easy.

There have been infections and blood clots and vein damage to contend with, but Pete has battled through without complaining.  Every day has been a step closer to getting better and his determination to beat this once and for all has been unwavering.

We’ve known for a while, that Pete’s only viable treatment option was going to be a Stem Cell transplant, and that his response to this chemo would determine what transplant type this would take.  His recent PET scan results were excellent, therefore he will be undergoing what is called an ‘autologous’ transplant, where he receives back his own cells, rather than those of a donor. This is a good thing.   Over the coming weeks, Pete will be in and out of hospital in preparation for the transplant.  He starts his 3rd 3-week cycle of chemotherapy tomorrow, and will then undergo respiratory tests, a heart scan and daily growth hormone injections to stimulate the growth of his stem cells.  He will also have a Hickman line fitted to his chest to assist with the treatment he will be receiving.  The stem cells will be then harvested from his body mid-December at the Beatson with him beginning the transplant process just before Christmas at the transplant unit within The Queen Elizabeth University Hospital in Glasgow.   During this time he will initially receive 6 days of high intensity chemo called BEAM, which will kill off all his bone marrow, and then the cells will be transfused back to him (much like a blood transfusion). Over the period of 3 – 4 weeks, the stem cells will settle back in his bones and begin to ‘regrow’ him a completely new immune system.  During this time he will be in isolation, and his consultants have been quite frank about how unwell he will be and the risks involved.  Hearing all of that was difficult for us to process, and there have been days when we have both been incredibly ‘flat’ thinking about what is to happen, but there really is no other option.  And again, we both feel incredibly fortunate that there is a treatment out there, and that Pete is being given a chance.  For too many people that is often not the case, so we need to treat this chance with the respect it deserves, as difficult as it may be to go through.  So although Christmas will be a bit pants this year, we are incredibly hopeful and positive about January and Pete returning home.  During his good days, we are focusing on making incredible memories with our family and friends……holidays up North, days out with the kids, impromptu karaoke nights, weekends away. If we have learnt one thing from this whole experience it is live every day to the fullest, take nothing for granted, and have a damn good time being with the people that you love.

“The devil whispered in my ear, ‘You are not strong enough to withstand the storm.’  Today I whispered in the devil’s ear, ‘I am the storm.’ ”

I had so many thoughts about how I was going approach my blog post marking a year from Pete being diagnosed with cancer.  It was going to be a celebration of how far he has come, how he’s coped with the past 4 months in remission and how we’ve learnt so much in our journey.  It is devastating for me not to be writing what I had planned. Last week, after a month of uncertainty, we learnt that Pete has relapsed, and his cancer has returned.  There are quite frankly no words that can accurately describe quite how much this has rocked us.  And while I hoped that I would be able to be ‘cest la vie’ about wherever his recovery path took us, we find ourselves impossibly heartbroken at the cruelty that nature has shown him.  

As I’ve mentioned in previous posts, retrospect is a wonderful thing, but even with the benefit of hindsight we could never have imagined that we would be dealing with this news only 5 months after being given the news he was in remission.  Recovery has not been easy, and it has been hard for him to get back to full fitness.  His immune system has taken a serious battering from the chemotherapy, however he was delighted to have returned to work on a phased return and although he was exhausted at the end of his working week, we thought it was just all part of the recovery from what his body had been through.  We spent 2 weeks in Florida in July and they day before we flew out, his oncologist confirmed that his latest blood tests were fine.  In blissful ignorance we boarded the flight ready for 2 weeks of fun.  It was just that, although his exhaustion was extreme and he became very ill just prior to returning home. Probably then alarm bells should have started ringing, although they didn’t at the time.  On returning from holiday, Pete was hospitalised with what turned out to be pneumonia and via the x-rays and CT scans he had done at the time we were alerted by the doctors that there was a swollen 4cm node in his chest.  Thinking nothing more of it, he was discharged and spent the following 3 weeks recovering.  We went for what we thought was a routine check-up at the hospital the day before my birthday, but by the demeanor of the consultant and what she was saying, we knew that something was very wrong.  The results of a further PET scan devastatingly confirmed that the node was indeed cancer.   The following day Pete had exploratory chest surgery at the Golden Jubilee Hospital in Glasgow and a week later, on our sons 4th birthday, we received the confirmation that his HL had come back.  

When I started this blog, I began with an episode entitled ‘The Beginning.’  I always felt that when I got to the end, I would (original as ever) entitle this particular blog entry ‘The End.’  But endings feel too final to me.  This isn’t the end.  It’s the end of the beginning, and it’s the start of a bright and sunny new chapter for on Monday, we received the absolutely incredible news that Pete is now in complete remission. COMPLETE REMISSION!

 To say we were overwhelmed is an understatement.  The 6 week build up to that moment, and the magnitude of hearing Dr Farrell say ‘complete remission’ is something that will stay with both of us forever.  We both cried.  I cried a lot.  In fact, I probably cried more on Monday than I have over the past 8 months put together. The incredible feeling of relief that it’s gone, and that Pete doesn’t have to go through any more treatment was quite simply the most overwhelming news we’ve had.  We celebrated in style in our pyjamas with pizza, champagne, and lots of cuddles from 2 incredibly excited little people.

The past 6 weeks have been strange and at times, un-nerving. We have been stuck in a weird kind of limbo, waiting to hear the outcome. Pete’s treatment was finished which was great, but there was always a niggling worry at the back of our minds….had it worked? I cannot describe the elation of knowing that it did.  We know however, that Pete is one of the lucky ones, and we will always feel incredibly fortunate and humbled that for him, things have been successful. The work that is put in daily by doctors, nurses, pharmacists, researchers, and so many more in the fight against cancer is quite simply staggering.  The NHS is a remarkable organisation, and something I’ve always felt fiercely proud of, even through the ups and downs.

So, what next for us? We are looking forward to life returning to some degree of normality. Pete still needs to have hospital check-ups every 4 months for the next 2 years but that feels like a walk in the park compared to what he’s been through.  He has his phased return date for work now, and is on the countdown to starting back, as well as having Florida booked for summer, which we are all excited about. So things are gradually returning to the way they were.  I saw a quote recently that said ‘Those who arrive at the end of a journey are not those who began’ and it absolutely resonated with me on every level. I do believe that this experience has changed us in many ways. Obviously, the changes Pete has gone through have been immense, life changing and physically and mentally draining, but he’s doing absolutely amazingly.  I would like to think that most of the changes I have been through, albeit they have been tough, have had a positive impact; spend less time worrying about what others think, appreciating every day how amazing our family and friends are, not taking the little things for granted. But there have been changes that I know will be harder to appreciate; paranoia about illness, worrying about Pete returning to work, anxiety over any symptoms returning.  But I know these worries are normal, and that with time these anxieties will fade, and in the grand scheme of things, we’ve dealt with much worse!

I’ve often lain awake at night thinking about this day and how I might feel. Elation? Relief? Pride? Fear?  I am feeling all of these things right now.  The end of the road.  The final hurdle in the journey.  Pete’s last chemotherapy. To quote Ernest Hemmingway ‘It is good to have an end to journey toward; but it is the journey that matters in the end.’  It feels somewhat surreal that we are finally here.  One part of me feels as if this journey has been never ending.  Another part feels it’s been so short - short enough that if I try hard I can remember every detail of every minute of every part of it.  So today, Pete completed the toughest part of his journey.  Chemotherapy #12. 6 months. Finished.  Done. Over.  One of my friends sent me a message tonight saying ‘not all superheroes wear capes’.  She was right - superheroes come in many guises.  Pete may have only a smattering of hair left (bar a fairly sizeable beard!), no eyebrows, plenty of skin sores, mouth ulcers and a pretty wrecked body but he is the ultimate superhero in my book. 6 months ago this moment felt like a lifetime away but finally here we are.  

While we’ve been going through this journey, I’ll often jot down notes or stories or events that happen because I don’t want to forget things that have been important to us, or made us smile, or given us strength at a tough time.  Last night was the first time I’ve sat and read back over everything I’d written, and whilst, yes, many of the notes were clearly written under the influence of gin, there are some surprisingly wise nuggets of insight in there (albeit they are few and far between!) I thought it important to share some things that, in retrospect, we’ve learnt from this unexpected journey, in the hope that if anyone finds themselves in a similar predicament, they might take comfort that they are not alone in this.  

1.       Don’t sweat the small stuff.  

The ironing isn’t done. I forgot to put the bins out.  The kids have had chicken nuggets for dinner twice in a row.  Don’t get hung up about it.  It doesn’t last forever.  Be kind to yourself, especially in the early days when it’s all new and you’re trying to adjust.  Things will fall in to place.  Just do whatever you need to survive, no one is judging you, so don’t judge yourself.

2.      You are stronger than you think

There were times when I was convinced I’d break, particularly in the early days.  Times when I looked at Pete and he looked so ill that my heart literally felt like it was breaking for him and that I’d never be able to hold things together.  But we are all stronger than we think.  People find their strength in different places.  I know Pete and I found ours in our children and our friends and family, who have so selflessly supported us from day one. Wherever you draw your strength from, remember you are tougher than you will ever know.

3.      Just being there is enough

For the loved ones of someone who is suffering, one of the hardest things I found was that I couldn’t really do anything.  There is nothing worse than the feeling of helplessness when Pete is curled up in bed or being sick and I cann’t do anything to make him better, but I remember him saying to me one night that just being there was enough.  Just being there to talk to, or to make a cup of tea, or to ask if he was ok. Just being there is enough.  And the same goes for everyone who has supported us.  Just knowing that people are there if we need them is enough.  And that has been what has kept us going on this journey.

 4.      Make the most of the good days

There are good days and bad days, for everyone on the journey.  Make the most of the good ones.  Laugh. Play.  Go out for dinner.  Take the kids sledging. Go and see a film.  Embrace the bad ones and know they don’t last long (and also know that gin and chocolate definitely help!)

I’ve thought for a long time, how I would approach this particular blog entry.  I was anxious that it in some way would seem insensitive for those for whom at the moment life has very much stood still.  That was us, and has been us for a long time.  But as the title suggests, life very much does go on.  And whether that life is the same, or completely different to the one you once knew, it does go on. It’s strange reflecting on where we were a year ago, 6 months ago, even last week, and how much things have changed. But finally, life is starting to go on.

In the early days, time completely stood still.  I couldn’t have told you what day it was and life very much felt like a giant juggling act.  People did, and very kindly, still do, check in on us regularly.  The words ‘you’re just so strong, I don’t know how you’re managing, I’d just crumble,’ are things we regularly hear.  At first I felt proud of our strength, wearing those thoughtful comments like a badge of honour.  We had been dealt a crap hand, we were being strong, and we would get through this.  But I would give anything to hand the badge back. Daily, I am in awe of the strength and resilience that Pete shows.  The cumulative effects of the chemo have now really started to take their toll, and I honestly cannot comprehend how he does it. He is sick, his body aches, and he is exhausted.  I don’t know how he stays strong.  There are days that I really don’t want to have to be strong and I’m not even going through the physically draining experiences he is.  Days where I’d rather snuggle in with the kids and polish off a tub of Ben and Jerry’s and watch Disney movies.  Days where I don’t want to go to work because I’m anxious about how unwell he is and what if something happens to him when I’m not there.  I know fine well there are days when Pete wishes I would stop bloody phoning him ‘just to check how he is.’  

But, slowly, life is going on.  And I think it’s important that if you are going through the standing still period right now, to know and possibly take some comfort from the fact that life very much stood still for us for a long time, but it does come back.  You can get back to ‘normality’ whatever that looks like for you.  We are definitely not there yet, and have a long way to go, but it feels night and day from 6 months ago.  Tentatively, we have booked a holiday to Florida with the kids in July. It gives us a focus, and a timescale, which is something that has been so lacking for us throughout this.  All going well, Pete hopes to return to work at the end of May and that is a timescale he needs to get him through these final few months of chemo.  Being stuck within the same 4 walls for half a year is draining, and the goal that he can finally get back to a job he loves is starting to become more of a reality. Yey!

Part of life going on, for us, was to understand how we have gotten to here and why.  Today we met with the senior GP of our medical practice.  Upon Pete’s diagnosis they undertook a review into his care, to identify if there had been anywhere that things could have been picked up earlier. We feel hugely comforted that, although this ultimately will not improve things for us, that the review has highlighted where things could potentially be improved for others, and we are grateful that the practice have been so honest and proactive in taking steps to improve the outcomes for their patients.  We are not and never have been, looking for apologies, or to lay blame.  We know now the variability of Hodgkins Lymphoma and how it presents in individuals can be tricky to diagnose. The NHS is under huge stress and resources are stretched to the limit.  We understand this, and we have the utmost respect for the exceptional nurses and doctors that have so selflessly and wholeheartedly invested their time into caring for Pete throughout this process.  

I thought of the title of this particular blog post one night on holiday whilst 2 red wines down and trying to think about what advice I would give to anyone who is supporting someone through chemo.  Most of us know the Keep Calm and Carry posters that were designed by the British Government in 1939 as motivational tools intended to raise the morale of the British public during the threat of air raids in WW2.  But there’s a deeper meaning to this particular blog title than that.  Those of you who knew me through my excruciatingly bad hair/braces/ gawky teen stage during the 90’s will remember my deep love for the Stereophonics. Their Keep Calm and Carry on Album features a beautiful track called ‘Show Me How’ and the lyrics, in that first verse in particular, feel so relevant to Pete’s journey, that it only seemed fitting I link them somehow.

Before Pete’s diagnosis, I had never really thought about chemotherapy, or what it was.  I’d been fortunate in that I had no need to, and retrospectively I was blissfully ignorant as to what it would involve and how hard it would be.  Fairly early on we were told Pete would undertake ABVD chemotherapy, every fortnight for 6 months.  Naively I believed chemo was just medicine that made you a bit sick; therefore when we had our first meeting with the chemo team and Pete’s consultant Dr Farrow, I was completely overwhelmed by what we were told.  Chemotherapy is a type of cytotoxic medicine, meaning it contains substances that kill living cells, preventing them from growing and replicating.  As they listed off the side effects (hair loss, mouth ulcers, sickness, exhaustion, irreversible damage to the heart muscle, infertility, lung problems in later life) I was, eventually, after 4 long weeks, hit smack in the face with the realisation of how serious the situation was.  I spent most of that meeting trying desperately not to cry, absolutely devastated that my best friend was going to have to go through this with no other viable option.  The car journey home that day was a sombre one.  We had already decided prior to that meeting that our little family of 4 was complete, but during that journey home I thought hard about people who have not yet started their family, and who have incredibly difficult decisions to make in that regard.  In that sense, we again felt hugely fortunate, despite the situation being a challenging one.

Pete’s first chemo was on 9th October, the day after his 46th birthday.  I hadn’t really thought about what it would entail, and I remember thinking, when things got underway, that the process was almost comical looking.  ABVD (made up of 4 different drugs) takes about 2 hours to administer.  Huge plastic syringes full of fluorescent pink medicine being gradually injected by a nurse over the course of 20 minutes. Various bags of drip fluid, wrapped in back plastic and frighteningly labelled with yellow ‘DANGER’ stickers. Anti-sickness tablets and steroids.  Machines whirring and ticking and beeping. And finally, to add insult to injury, an extended injection in your bum.  It felt incredibly surreal and almost as if we were on some sort of medical movie set.    

There’s no way to dress it up.  Chemo is crap.  Really, really crap.  Pete has had almost every side effect going.  The mouth ulcers, the exhaustion, the nausea.  He’s a broken man the week of his chemo, spending most of his days in bed or on the sofa. The nature of his job means that working through chemotherapy is impossible, and that in itself has been hard to adjust to.   The day to day practicalities are frustrating.  Every second Monday he’s at the hospital for most of the day. Blood tests every second Friday. Being prodded, poked, scanned, questioned. The constant battle against sickness and exhaustion. There are then the problems that arise from the chemotherapy destroying his immune system - staying away from crowded places, trying to keep the kids away from him if they are ill, monitoring his temperature if he begins to feel unwell. The week before Christmas when his temperature soared he was taken into hospital and put on an antibiotic drip to combat an infection he had picked up.  Yet as rubbish as it all is, Pete hasn’t complained once.  I’ve often questioned him about how it feels, and, with unwavering pragmatism, his response is always that prior to his diagnosis he felt so unbearably ill that anything he’s had to do to combat cancer through this feels like a walk in the park.  But I see him in the days after his chemo though, and I know how dreadful he must feel. But he’s a fighter, and as brave as hell.  And for that I think he’s incredible.  

‘No man is an island entire of itself. Every man is a piece of the continent’ - John Donne, 1964.

I think the premise behind these words is that no human can thrive when isolated from others.  How poignant these words seem now being in the position we are in, for if there is one thing I’ve learnt from this experience, it is how fortunate we are to be part of the continent John Donne speaks of.  To be surrounded by people who have shown us such support, love and unwavering kindness through this journey. I like to call these people ‘our beautiful humans’. They are core to our journey, an integral part of the machinery of how we function, and without them our engine would simply stop turning.

Our beautiful humans have done the most incredible things for us while Pete has been unwell. Our families have been, quite frankly, heroic.  Grandparents, Aunties, Uncles – they have literally dropped everything to help us out, and we feel so fortunate to have most of our family close by.  We have received so many beautiful messages of support from friends and strangers, both near and far, many via this blog.  These have made us smile during the good days and kept us positive during the hard ones.  Shortly after Pete’s diagnosis mysterious packages started arriving on our doorstep – boxes of tablet and truffles, deliveries of cake and magazines, plants, gin (!) and many other thoughtful items, to help us through the weeks.  My closest group of girlfriends are clearly in cahoots with each other and after every chemo, a beautifully put together ‘chemo box’ arrives, with treats for the kids and something to make Pete and I smile. The first time these arrived both Pete and I cried.  Cried because people had gone out of their way to show us kindness, which we never expected, but which we appreciated so much at that moment.

I’ve always prided myself on being self-sufficient.  Having things under control, being organised, getting us from A to B and back again on a carefully planned schedule.  Pete’s cancer has taught me that schedules and bedtimes and timetables don’t matter.  It’s one day at a time, and that’s fine.  It’s ok to ask for help. In fact, it’s essential to ask for help. I’ve accepted that to get through this you need to ask, as much as we don’t like burdening others.  I had to text my wonderful neighbour a few months ago in the middle of the night – ‘Gaby, are you able to take Murrin to school tomorrow? Pete’s had his PET scan and is radioactive until 2pm and can’t be near the kids.’  Another beautiful human, she accepted without question.

I read William Golding’s Lord of the Flies when I was at university.  Through the haze of the years I remember little from it, other than the episode with Piggy and the overwhelming message Golding emphasises that fear is the most destructive of all human emotions. I absolutely believe that.  Fear, and in particular fear of the unknown, is crippling at times, and that is what made the following 2 weeks so difficult.

The initial days after Pete was admitted to hospital were, for us, one of the hardest parts of this journey.  The doctors had told us they believed it was Hodgkins Lymphoma, but this could only be confirmed by a biopsy, the results for which can take a while. A CT scan had identified Pete had numerous tumours in his neck and upper body, including a 15cm tumour in the centre of his chest. It didn’t sound great, but the doctors were wonderful and assured us that if it was HL, that survival rates were good and they would treat to cure.  But until then, we were only surviving only on a possible, and not a definite.  The fear of the unknown simmered quietly under the surface in both of us.  

We chose not to tell anyone other than our direct family and close friends for those first few days.  It was a difficult place to be; Pete might have cancer, he might not. What an awkward conversation stopper that would be when chatting at the school gates.  Therefore we kept things as confined as we could until we knew what we were dealing with. There were then the difficult situations, in the street, or at the school gate, when people were asking how we were, and we had to smile and say that everything was fine.  I work full time and leave early each morning, so while Pete was in hospital I was off work with the kids and I was doing the school pick up and drop off, which I never do.  We live in a small village, so immediately I knew people had noticed, and it was awful having to lie to those lovely people who had taken time to ask if everything was ok.

Pete eventually received his diagnosis on 1st October - Classical Hodgkin’s Lymphoma Stage 2B. In a weird way, we were relieved that it was HL. When I say relieved, I do not mean to belittle the seriousness of what was happening, but relieved that we finally had an answer after almost 2 years of searching. And although it wasn’t great news, we are acutely aware that there are many many people who leave that hospital with much worse news, so we were incredibly thankful that Petes prognosis was more positive.  The following week was a whirlwind of consultant’s appointments, Chemo Team appointments, PET scans, blood tests and Oncology visits, all in preparation for Pete’s first chemo, the day after his 46th birthday.

It’s funny how I have a memory for dates. Pete still mocks me for this.  “How on earth can you remember the date we arrived in Portugal in 2011, I mean, who does that?”  Silly dates. Dates which have no real relevance to anyone else other than me.  The date I passed my driving test (3rd February 2000), the date I left to travel round the world for a year as a naïve 23 year old (14th January 2005), the date I announced to my best friend that even though I’d only known Pete for 3 months I was going to marry him (30th March 2007), the dates I found out I was pregnant with our two children (11th August 2011 and 23rd December 2013). The 18th September 2017 will be one of those dates.

In the weeks prior to this day, Pete really was a shadow of his self.  He by this point was only sleeping 2 or 3 hours a night and even these were broken up by scalding hot showers and applications of cream to ease his skin.  He was still working full time, juggling shifts, night shifts, looking after the kids and 2 police dogs.  He’d taken to lying on the living room floor at night in hope for some respite, desperate to glean some shred of sleep wherever he could. We’d received results of the X-ray he had done, and it detected a shadow on his lung.  Pete didn’t appear worried, as this had apparently happened before when he was younger, so I in turn didn’t worry.  I assumed all would be ok.

On 17th September, despite my protests that he wasn’t well, Pete went out on his night shift weekend.  After coming off shift, he spent the days of that weekend in bed, desperate for sleep, and not eating or drinking. I hadn’t seen him most of the weekend and was trying to keep the kids from disturbing him but I had gone to brush my teeth and he was in the bathroom.  I took one look at him, and immediately knew something wasn’t right. His neck had swollen up, and he looked like one of those gigantic body builders with neck muscles disappearing into his shoulders.  In that split moment the first thing I thought of was the Incredible Hulk, terrible I know, but he looked almost comical.  I tried to convince him to phone NHS24 but, after his near fortnightly trips to the doctor for the past year and a half, you can understand his reluctance as he was convinced they thought he was mad. He would make an appointment with the doctor for tomorrow.

The following day I was on the way from work to the gym when my phone started buzzing with missed calls and messages, all of which unusually were from Pete. I phoned back, expecting the usual ‘can you pick up some bread on the way home.’  I was not expecting to hear the words that came quietly down the line -  ‘They think its Lymphoma’.

Lymphoma. One tiny little word, but a word which would change everything. I wish I could remember what the exact feeling I felt at that moment was, but I can’t.  I can’t remember how it felt.  Maybe I’ve blocked it out? Maybe I didn’t feel anything?  I’m sure there are a million psychological theories to explain. All I remember is my face being really hot. I couldn’t tell you how I got home either.  No idea.  I remember thinking there’s obviously a mistake. There must be. Pete can’t have cancer. And then, as I stopped at traffic lights, the tears came.  What if there wasn’t a mistake? What if this was it? Was he going to die? What about the kids? When I arrived home and as he opened the door I could see in that moment how scared he was.  So off we went.  My mum, bless her, dropped everything and came up to look after the kids, and we left to go straight to the Critical Assessment Unit at FVRH…. Absolutely terrified but together.

Everything starts at the beginning.  For the purposes of this blog, our beginning was January 2016.  The beginning of Pete’s symptoms.  It’s pretty difficult to remember life before that date, mainly because the past 20 months have been so up and down we can’t imagine what life was like prior to then. So January 2016 is where I will begin this beginning.

Pete and I met in 2007, and for me at least, I knew he was ‘the one’ as painfully clichéd as that sounds.  We married in 2010 and welcomed our daughter Murrin in 2012 and son Heath in 2014.  Life was as normal as can be for 2 working parents juggling work, life and parenting but we made it work. And we loved it.  Pete works as a dog handler in the police and I’m a primary school teacher, and for all things are mad, we wouldn’t change it for the world!

In January 2016, we went on holiday for a week to celebrate Pete’s brothers 40th, and shortly after returning Pete started to complain about itchy hands and feet.  He launched into a month long campaign of googling symptoms and purchasing every skin cream known to man; emollients, anti bacterials, anti fungals….literally everything!  Finally admitting self-diagnosis defeat, he made an appointment later that month with the doctor.  For a number of months he was treated with antibiotics, creams, body washes, for a variety of different skin conditions, but nothing worked.  The itch got gradually worse, spreading over his whole body, and causing him to scratch constantly and cover his body in angry sores. He eventually was referred to a dermatologist in June 2016 and embarked upon another monotonous regime of tablets, creams and waiting.  Nothing was working. So desperate he was that in December 2016 he forked out a substantial sum of money for alternative therapy.  They were very helpful and said lots of nice things, but pocketed £300 and handed over little more than multivitamins. (And before I start getting bashed for slagging off homeopathy, I am not knocking alternative therapies in any way, each to their own, but it didn’t work for us and unfortunately it’s made me more cynical than ever).  As time went on, Pete started to change.  The fun loving, full of life man that I knew became more withdrawn and disengaged.  He’d lost some of his spark, he didn’t want to do things anymore and it was really hard to see.  He itched so much at night that it woke him at all hours.  He was desperately tired and cranky, and not the Pete I knew. We were working, coming home tired, niggling as married couples do about the usual household gripes, but without sleep and feeling awful Pete was struggling.  I am ashamed to admit that although I tried to be supportive, there were times I would get annoyed at his lack of enthusiasm for things; I just didn’t understand the magnitude of how dreadful he was feeling.  Only retrospectively can I appreciate how hard those days were for him. Hindsight is a wonderful thing, yet ironically never around when you need it.  The cycle continued to get worse, and after 12 months when the dermatologist finally diagnosed him with folliculitis it seemed like we FINALLY had an answer. He was prescribed numerous other tablets, all of which made no difference, and eventually undertook a 6 week course of UV light therapy at FVRH in May 2017.

We went to Florida in July with Pete’s family but as the holiday wore on, they began to notice what had so far, been confined pretty much just to me and him.  Pete didn’t sleep, he was exhausted, and his skin itch was by now constant and totally consumed him.  He had started to wake nightly with dreadful night sweats, but numerous visits to the doctor still drew a blank. He’d lost nearly a stone in weight without really trying. He’d had endless blood samples taken; pee samples, poo samples, every sample going. He’d had allergy tests. He’d cut out bread, sugar, caffeine.  He’d gone gluten free.  Everything under the sun that Google suggested we had purchased (my personal favourite being Potassium Permanganate crystals, which unbeknownst to Pete, would turn his feet jet black when he soaked them in it…..imagine that in the height of flip flop weather!)

I’ll admit straight up, I’m not the most sympathetic nurse.  Actually, I’ll rephrase - I have zero sympathy for Pete’s ‘man flu’ moments. But this was different.  I began to trawl the internet late at night and look at symptoms and online diagnoses, desperate for an answer.  I came up with a number of conditions; scabies, thyroid problems, personality disorders…..all of which I knew weren’t it but it didn’t stop me trying. I’d phoned his doctor, behind his back, in despair, worried he was depressed.  We even discussed hypnotherapy….was he scratching so much he was imagining the itch? Retrospectively, it’s almost ironic how many trips to the doctor and how much searching didn’t throw up the answer. Just type ‘Hodgkins Lymphoma’ into Google and it’s all there.  But because at that point we didn’t have an answer, and didn’t know what it was, we just hid it underneath the shiny façade of normal family life, and tried desperately to get on with things, because, especially when you have kids, that’s just what you have to do.  

Finally in August this year, desperate and running out of options, we went to see a private consultant dermatologist at the Spire Murrayfield.  He asked about Pete’s story, asked questions, and listened.  Really really listened.  It was evident from our discussions that he felt that this wasn’t just a normal skin complaint and arranged for more bloods and an X-ray to be carried out.   Sitting there in that office, it was the first time in months we felt that someone was actually listening to us.

There are many reasons I’ve chosen to write this blog. Because it’s my form of therapy - a cathartic experience where I can get out what I need to say without having to burden those who are already supporting us so much.  To say the things that are easier to type than to speak? Possibly. But mainly, I’m writing this blog to give others who are going through something similar HOPE.  To let them know that they are not alone, and as awful as it seems just now, there is light at the end of the tunnel, even though the tunnel feels bloody long at times. I spent a long time after Pete’s diagnosis wondering how other families deal with things like this, and for all there are great support sites out there, I wanted to hear it first hand from someone who had been through it.  So if only one person reads this, and that one person is comforted that they are not alone, then this blog will have served its purpose.   I also wanted to document this journey because it’s something I’m so proud of Pete for.  How he’s coped with getting dealt one of life’s totally shit hands.  How strong he is, and how much I love him. And how it’s made our little family stronger, and shown us how amazing our support network is. This is something I can only do because of the unconditional love and support of our family and friends. And for that, there will never be enough thank-yous.