Two steps forward, one step back

We've been pretty good at taking it in turns to write this blog but Nick isn't up to it this week so you're stuck with me again I'm afraid. This time last week I was worried that Nick was going to get sent home too early but then she improved considerably (as predicted by the doctors; I needn't have worried!) and was discharged on Tuesday. The thought of being set adrift from the security of the hospital was daunting but Nick was feeling stronger, her stem cells had grafted in two days less than the average and all her numbers looked very positive. She was eager to be home, sleeping in her own bed, to be surrounded by green-turning-gold and get some fresh air, to eat whatever and whenever she wanted and to snooze the days away with the dogs. So I packed up the car with the contents of her room - maps, books, hundreds of postcards, her colourful bedding and drove her home. The 50 mile car journey was tiring for Nick who had barely walked more than a few yards for two weeks but it was good to get home.

Stem cells in action

I don't think either of us was prepared for just how tired Nick would be once she got home. The doctors had warned that she would likely feel worse for a day or two once she was not being nursed in a small room with an en suite bathroom especially after enduring the journey, but it was still a shock. We've all felt tired, exhausted even, but this fatigue is on another level. If I hadn't been here that first day I know that Nick would have had nothing to eat or drink, simply because it was way too hard for her to move around to do anything for herself. Despite being desperate to see the work that has been done in and around her cabin there was no way she could get outside and walk across the garden. For the first time since perhaps December when her diagnosis was in progress I witnessed Nick feeling truly low about her situation. Having no energy is such a depressing feeling but couple that with not being able to fix those low energy levels by eating and drinking what your body needs in order to recover and it makes it insurmountable. Since the aggressive chemo which caused inflammation and ulceration all through her digestive tract Nick has had almost no appetite, her sense of taste is severely impaired and the soreness in her mouth, throat and stomach make the physical act of eating painful. Not a winning combination for trying to put weight back on and fuel your cells for regrowth. On top of this just sitting up in order to eat is a daunting prospect and when I gave her a knife and fork the other day Nick said there was no way she could lift both of these at the same time. Can you even begin to imagine feeling that weak? Can you imagine Nick feeling that weak? No, it is painful to watch so god knows what it feels like for her.

We hoped that the second day would be a little easier after a good sleep but it was worse. Nick could barely stand and despite heroic attempts at eating she was still only managing tiny amounts although her mouth was definitely less sore. As the day went on she became unwell with diarrhoea, felt dizzy when standing and started to get a temperature. I called the local cancer unit where Nick had her CHOP treatment and they advised me to bring her in. Her blood pressure was low, her temperature high and it seemed she had developed an infection. We knew this was highly likely to happen at some point but didn't expect it to be so soon. She was admitted and started on IV fluids and that is where she has remained since Thursday afternoon, feeling utterly wiped out and trying to fight off this infection despite feeling like she has no fight in her.

Having seen Nick so unwell a couple of weeks ago and then start to feel better I didn't expect to feel so worried again so soon. This has brought home to us just how vulnerable she is, and will continue to be, until her body regenerates fully. Nick described the last few days as being 'rock bottom' which is weird because unbeknown to her that was the working title of my blog last week. From my perspective ten days ago was when she hit rock bottom, delirious from drugs and high temperatures, constantly suffering sickness, diarrhoea and pain but for Nick rock bottom came this week. Maybe because she is more aware this time, maybe because the body and mind have some inbuilt ability to block out the memory of intense pain and illness. I had been told by someone who had watched a loved one go through a stem cell transplant that the memories of that acute stage of sickness were worse for the onlookers than for the patient. From the sidelines I would say that last week was way worse than this week in terms of 'illness' but what has caused Nick anguish since coming home and then becoming unwell again is frustration at her total loss of strength and fitness which is so important to her and has been her miraculous way of coping with lymphoma. She has walked, cycled, swam, run and press-upped her way through the last nine months and that has kept her sane, proved her defiance and reassured us all that nothing would be too much for her. But this has been too much for her and seeing her spirit broken has been too much for me. 

Nick's powerful body has suffered an incredible insult, she has lost a lot of weight and cannot see a way back to health and strength while her appetite is so poor and eating is such a chore instead of a pleasure. But each day her mouth is less sore, most of the ulcers are gone now, her sense of taste is a little closer to normal (she managed plain water for the first time yesterday, it has tasted really bad until now and the only thing she could drink was blackcurrant) and she manages a little more food and a greater variety of textures (crusts!!) and flavours (Thai curry!) but the progress is painfully slow and the portions pitifully small.

Waking up suddenly in the middle of the night with the contrasting feelings of a hollow stomach and a bursting chest momentarily leaves me trying to remember whether I have an exam in the morning or a job interview or maybe a triathlon that I haven't trained for...until I recall that's it's just my default setting at the moment of wondering how Nick is, whether I missed a call from her or the hospital, whether I need to jump in the car and go to her. Life feels very much pared back to absolute basics. On Friday I heard that request show on the radio where people call in to get a song played and tell the listeners what they have planned for the weekend. I usually get a kick out of everyone's family get-togethers, road trips, weekend breaks and parties but this week I found it hard to grasp that people could have the luxury of celebrating a birthday or going to a school reunion without a care in the world. What we wouldn't give for a day that isn't ruled by cancer or cancer treatment, or the side effects of that cancer treatment. We've tried pretty hard not to be ruled by lymphoma and chemo all year but these last few weeks it has inevitably taken centre stage and we don't like it! Just when you think you've overcome a challenge there's another one waiting in the wings, unexpected, unpredictable and hard, so bloody hard. 

Because Nick's temperature kept creeping up the consultant decided to remove the PICC line on Friday in case this was the source of the infection. This line into a central vein had been in situ for three weeks and had been used to take blood samples every day as well as to deliver chemo, fluids and other drugs but was no longer really necessary. Nick was very reluctant to have it removed because having it there means no needles. Nick is not a fan of needles. Interestingly since the start of multiple blood tests and chemo sessions these last nine or ten months her previous vague dislike of needles has actually got worse. It may seem logical that the more frequently you are exposed to something unpleasant the more you get used to it and are able to tolerate it but this has certainly not been the case. Not surprising I guess when you consider that some of those needles were drilled into her pelvic bones, some were inserted between her vertebrae and most of them were used to inject poison into her bloodstream. Why would you be a fan? Similarly the CHOP chemo got more difficult for Nick each month as she could anticipate the instant feelings she would get whilst having treatment and also the later side effects that got a little worse each cycle. So to lose her venous access was a source of anxiety which proved to be justified as within an hour of it being removed Nick needed IV antibiotics so a cannula had to be inserted and she has subsequently needed to have bloods taken several times. Just after I arrived at her bedside this morning a nurse came to take blood. The needle was clearly painful but the tears streaming down Nick's gaunt face were more from the sheer frustration at having to suffer this pain than from the pain itself. 

Thankfully today Nick has felt a little better physically so it seems the IV antibiotics have kicked in and all being well she will be allowed home on Monday. We can only hope that eating gets easier and with that her energy will start to return because these things will, I'm sure, lead to stronger immunity and a happier Nick. She feels weak but we all know that her spirit is strong. There have still been postcards every day which she loves hearing me read and always make her smile however fed up she's feeling. 

We realised that this time last year we were at Hever Castle in Kent taking part in the Castle Triathlon Series. We both did a triathlon on the Saturday and then on Sunday while I worked in the registration tent, Nick completed the 1.9km swim section of the half-iron distance event and then spent the whole afternoon out on the lake lifeguarding for the childrens' races. By the time she finished her back was causing her agony. We now know that this pain came from the tumour in her spine and pelvis but she was still managing to take part in these activities. What a difference a year makes...we just have to project that forward now and picture Nick at Hever Castle this time next year swimming, cycling and running back to fitness.

In transition at Hever Castle Triathlon September 2016