Up The Farway Tree

 It never rains but it pours!

After my last blog I haven't been too well and just escaped from hospital again last night, after being admitted last Tuesday with an infection.   

I had woken last weekend with an awful migraine and felt pretty grim all weekend, spending most of it lying down in bed.  I had also started the injections to stimulate my bone marrow to produce more white cells, as this is the point in the cycle where I would be most susceptible to infection.   I felt really achey and generally miserable, but thought some of that was due to the injection itself, which can cause bone and joint pain.   I had  a review at the Beatson on Monday, and again, we put a lot of my symptoms down to the migraine, plus injection side effects. I didn't have a fever at this point but had been checking it frequently as my body felt the way it does when I have a fever.

Tuesday arrived and I felt even more grim than before.  I did then have an obvious fever, so had to phone the Beatson helpline (there is a 24hr number to call if you get a fever).   Normal protocol would be review at the Beatson immediately, however due to Covid, they can't see people with a fever in case it is coronavirus, which would be catastrophic to introduce to a cancer hospital.   So they arranged for me to be seen at the QE through the emergency route, with the plan that haematology would review there.  I wont go into all the details, but it didn't work out as smoothly as hoped, and there was a bit of confusion when I arrived at the assessment unit.  The bottom line however was that my neutrophils (white cells - fight infection) were zero, so my body had no way of fighting off infection.  I was therefore admitted and started on IV antibiotics immediately.    This is called neutropenic sepsis, and is a common complication of chemotherapy.   There was no clear source of infection but they treat with antibiotics that cover a broad spectrum of bacteria, so it doesn't really matter where the infection is coming from.  In fact, in these cases you often never work out the source.   Thankfully the fever settled quickly and I started to feel much better.   I was moved to the CF ward as they are best placed to co-ordinate my care between my CF issues, haematology and transplant team.   I had a few days of IVs, continue the injections to stimulate my bone marrow and thankfully my white cell count came back up.   I got home last night on oral antibiotics to finish at home.  

Although I was aware this is a potential complication, it is a bit unfortunate it happened after the first cycle.   It might happen again but at least I know what to expect, and in future then plan would be to be admitted via the CF team, which should be a smoother process.   They also managed to clarify that I was able to tolerate an antibiotic I previously had a reaction to - so this is useful for future management!   It was tough being in hospital again so soon, as I still wasn't allowed any visitors.  Although I know this is the same for all patients at the moment and at least I had my phone and could make video calls with Estelle.   She found it difficult coming home from school to find I was back in hospital, but she is coping really well and is such a trooper.  

Unfortunately, my hair started to come out during my hospital stay.  It's more like when I brush it that huge amounts come out on my brush.   I have managed to speak to a hairdresser in Glasgow who deals with NHS wigs, so they have ordered one that looks most similar to my own hair (from photos I sent her).  I have a phone appointment during the week with them to discuss the hair loss and next steps.  I think they will be able to just send me the wig as opposed to be risking going into the shop - I don't think any extra risks are worth it just now! I do have the option of buying my own wig if I want something fancier, but I've heard really good things about the NHS ones, so makes sense to go down this route first, or at least until it feels safer to go into a shop.  My mouth has been a lot better this week, as has the nausea.  My appetite isn't great but I'm managing to eat small meals and take the supplements.  

Due to having a fever, I obviously had to have a covid test.   Although this didn't affect me directly, it meant that Andrew and Estelle had to self isolate until I got a negative result (even though they were well). It meant Estelle had to miss couple days of school, as is took 48hrs to get result back, and they were both stuck in the house.  The bottom line is though that if you have either a fever, new cough, or loss smell/taste then you have to assume it could be covid until proven otherwise.  There is absolutely no way of knowing from symptoms alone - the type of cough, whether you have a runny nose,  how high the fever was, whether it was a one off fever - it really doesn't matter - they all count as covid until you get a negative test.  The rules are there to protect everyone, and although its annoying being stuck at home, it's not that much of a hardship when you might be helping prevent the spread of covid.  We all need to be thinking of each other during this pandemic and follow guidance, whether we agree with it or not.  It's the only way we will ever get out of this situation.  I know people think its their right to take a risk with their own health - that's fair enough in theory - but it's not right when that's at the cost of putting other people at risk.  We need to keep community transmission rates as low as possible over winter in order that the NHS can cope with a rise in covid cases (as well as the normal winter rise in admissions).    There were major issues with beds when I was admitted and we are only in October.  Hopefully we can all work together to get through this and, like everyone, I can't wait until life is a little more normal!

I have clinic this week before my next chemo, but I think as long as white cells are ok, then chemo will go ahead on Friday as planned.   I know what to expect this time with regards the nausea and painful mouth, so hopefully will be better equipped to deal with that.   I've read that the first session can be the worst for some side effects due to higher tumour load, so maybe it wont be quite as bad this time.  I imagine the tiredness probably builds with sessions, like it did with my radiotherapy, but I can cope with that.  I can't believe 2 weeks have passed already - I'll be half way there before I know it!