Mid Cycle

I have hopefully now passed the critical part of cycle where most at risk of infection (I'm scared to speak too soon!) so hoping it's smooth sailing until round 3 at the end of next week.  My mouth did become quite painful again but has eased up now - although I still can't taste anything which is frustrating.  I'm packing in the supplements though and think my weight has steadied out.

My CT scan was changed to next week, as the doctor felt it was too close to 2nd cycle so wouldn't have allowed enough time to see impact of that on the nodes.  It also would have fallen at my most vulnerable point and given the covid rates in Glasgow, it would have felt very risky going for scans at that time.  So the appointment is now on Tuesday.  I will have outpatient clinic on friday 6th before my chemo, although I don't know if the scan results will be available that early.   I must admit that I feel anxious even thinking about it!

I've been trying to keep myself occupied with some more crafting and some early Christmas shopping - I feel that need to be very organised in case I am unwell nearer the time!  It is going to be a very strange year for everyone with the covid situation.  I really can't see things improving much before Christmas so it might just be the three of us at home this year.   I can't take any risks travelling or breaking rules for the sake of one day.  My planned chemo would also be on 18th Dec, meaning that Christmas would fall at the time I would be most at risk of infection.  We will just have to see what happens and do what's best at the time.   There will be plenty time for celebrating when I recover from this and when covid is a more distant memory for us all.   Estelle will be happy as long as Santa knows where we are :-)

In other news, Andrew managed to break his big toe last weekend!  He was running up the stairs because Estelle was shouting from her bed - and cracked his toe into the stair.  I did feel very sorry for him as it did swell up immediately and went black and blue!  He has had it x-rayed and there is a wee fracture, but thankfully not needing any further treatment.  He has managed to hobble along to the bus stop with Estelle all week and it is starting to heal now.  Just what he needed in the middle of looking after both Estelle and myself!  Estelle thought it was a great story of course and has told everyone in her class (of course she has also told them all that I am bald!)

I'm feeling very tired now, which is exactly what happened at this time last cycle, so planning to just have a quiet week.   The school are having some halloween games tomorrow but unfortunately they can't go in fancy dress this year.  However she is planning to dress up at home and we will do some fun games with her - dooking for apples anyone?! 

I'll probably not update until after next chemo unless I have any news about my scan.

In the meantime, Happy Halloween.......!

 Round 2

After my last blog I did start to feel gradually better following the infection.  It was nice to have a few days of feeling more like myself.  It was a busy week with a number of different hospital appointments, which was tiring.   I found during the hospital admission my hair had started rapidly falling out and by last week it was only straggly and awful looking.  I decided it would be better just to get Andrew to shave it off - yes, that's how much I trust him!   We snipped it short then used the electric hair trimmer to shave the rest.  It was a strange experience - I was ok at the start, became emotional mid way then felt better after it was done.  It actually didn't look as bad as I expected and my head was also not as big as I thought it was haha!  It felt a bit tender afterwards but feels fine now.  I also noticed how chilly it can be without hair!  Estelle was there for the process (at her choice) as I felt it was better for her to be involved and see what was happening, rather than getting a shock seeing it all gone.  We had been discussing it a lot in the lead up and she had been helping me choose scarfs and hats.   She also has grasped the concept that the chemo is killing the cancer cells but at same time has killed the hair cells, so she has a good understanding.  She mostly thought it was quite hilarious and said I looked like a cute wee troll!  She also took great delight in shouting "night night baldy!" on her way to bed.  In the house I am not bothering wearing scarfs etc as I might as well be comfortable!  I have now received an NHS wigs to try but following chemo haven't had a chance to try it properly.  It looks very like my hair colour and style but I need to get it sitting in the correct parting, which is proving trickier than I thought. It's a shame I can't just go into the hair dresser and let them sort it.

After pre assessment clinic last week it was decided that my 2nd chemo would go ahead as planned.  This was as a day patient, so much better than having to stay in hospital.   The day unit was nice, with individual rooms and comfy big recliner chairs to sit on.   The rituxemab could go quicker this time (as had no reactions last time) so only took an hour, then I had the rest of the chemo.  I had a clinic appointment at 10.30am before chemo, so was actually there until 5pm, so was a very long day.  However I passed the time easily with netflix and a chat with my friend Nicola who works at the Beatson (very handy!)   We had a bit of trouble finding a vein but managed in the end - I hope they hold out for the following sessions!

This time I felt more prepared for the side effects.  I have been using both anti sickness on regular basis and although felt really quite nauseated the first 2 days, it does seem to be easing now.  My mouth hasn't been as sore as last time (as of yet!) although unfortunately my taste is altered, so everything tastes a bit weird!  This is making eating more of a chore but I have increased my supplements after losing weight during last admission.  I start the injections to boost white cell at end of week and am not looking forward to the bone pain - I am hoping that last time some of that was due to infection. Overall I feel I am coping better this time round, so hope that continues!

I will be getting a CT scan at end of week to see if nodes have started responding to treatment, although not sure if that will be reported before my next chemo.  I know I will be very nervous getting the results but am trying not to think about it just now.

In other ways life continues as usual! Estelle enjoyed her October break even though we couldn't go anywhere other than the park.  She is actually very easily pleased though and loves being outdoors!  She also loves crafts and drawing, so I was able to do some Halloween crafts - we painted conkers to make Halloween decorations and she loves if I will sit and draw with her.   I am also trying to do some crafts to keep my mind occupied - although finding my dexterity is a bit off so the outcomes are variable.

My next chemo will be 6th November so I will just focus on getting to that point in one piece and hopefully avoid any admissions before then!  Thank you for all the kind messages I have been receiving - it really does help keep me going!

 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!

Round One

The Hospital Stay

So after my last blog, the scans were reviewed and it was decided I was to be admitted to the Beatson to start chemotherapy.   The consultant had been surprised by the growth of the nodes despite having reduced immunosuppression, and in fact there had been new nodes in another area of my abdomen.  Therefore it was felt that both the Rituxemab and chemotherapy would be required, and because of my ongoing pain, she wanted to start this asap.

I went into the haematology ward at the Beatson on Friday morning.  I handed over my spread sheet of medications (you have no idea!) and we agreed that I could keep my own meds and self administer, which is much simpler all round! I had an cardiac echo in the afternoon (heart needs to be tip top for chemo)  and then had the rituximab infusion late afternoon.  This is the antibody drug that attaches to the cancer cells, marking them for my own immune system to destroy.  The first infusion has to be done very slowly as there can be some side effects, so in total it took about 4.5 hrs.  Every 30 mins they check observations (BP, temp, pulse, oxygen), and if all ok, the infusion rate is increased.   I had one wee fright when I developed some sudden indigestion pain, which needed doctor review and ECG to check it wasn't cardiac.  We surmised it was likely the high dose prednisolone tablets I had taken the hour before - and then I had been lying down flat.  All the drama for some heartburn haha!  It was a really exhausting day - so much new information.  I hadn't really read much about the chemo ahead of time as I had only known for a day before and was more focused on getting ready for admission.  I was given written material and the ward doctor went through side effects - it was all quite overwhelming. Despite being exhausted I was also very awake and alert from the high dose prednisolone but got a sleeping tablet which allowed me to get a great rest - I only woke a few times because had IV fluids so machine kept alarming - but I just buzzed and went back to sleep!

On Saturday I had the other chemotherapy drugs - vincristine, cyclophosphamide and doxorubicin (and more prednisolone). They give some anti sickness first, and then its a 5 minute infusion and two bolus injections - so actually the process itself was very quick and uneventful.   As tumour cells break down they release their contents into the blood stream which can cause chemical changes - so bloods are monitored and I had another infusion with a drug to protect kidneys from these changes.  These tend to be worse in first cycle, because there is a higher load of tumour cells.  Fortunately my bloods were stable.  I was started on an anti-viral drug because I'm prone to cold sores, which we want to avoid. 

The nurse also spent time going through the side effects again and I felt quite teary and overwhelmed again.  She said that I will most likely lose my hair (possibly eyebrows/eyelashes as well) and this can start a couple of weeks after first dose.  I was aware of this from the day before, as I had been given a prescription for NHS wig.  Normally you would attend the wellbeing centre at the Beatson, where they have a hair dresser who can explain the process and organise a wig etc.  However because of Covid, the wellbeing centre has been closed since March!  The nurse was able to get me a couple of phone numbers for hair dressers in Glasgow who accept NHS prescriptions for wigs.   She said it is best to try and organise this before your hair falls out, so that the hair dresser can see what my own hair looks like for the best match.  Of course you could choose something completely different ......maybe I'll go blonde haha!   My understanding is that I can put money towards the wig to upgrade - I have seen a real hair wigs on people before and they are amazing these days and hard to tell its a wig.  I don't know how comfortable they are to wear though and imagine I might opt for the scarf/turban type option for day to day.  They also advised that most people get hair cut quite short when it starts coming up, then maybe shave it, as this is probably less traumatic.  I'm not sure what to do about this though as I don't want to risk going to hair dresser because of covid - especially given the current Glasgow rates!

The main side effects make sense when you understand what chemotherapy drugs do.  In our body we replace cells by cell division - when each cell divides into two exact replicas, then those two divide into another two...and so forth.  Chemotherapy drugs interrupt this process at various points in the cycle, and by doing so kill of the rapidly dividing cancer cells.  However the drugs will also kill of some of the normal cells that are also rapidly dividing -  the ones that we replace constantly are hair, nails, skin, mouth, digestive tract and bone marrow (where our blood cells are made).  I'm not going to list everything here as there is no point worrying about some things that might never happen, but its helpful for me to have some idea of what to expect.

The rest of the day after chemo was uneventful and I actually felt reasonably ok, other than being tired.  On Sunday however I woke up feeling very nauseated, which is really common with chemo.  I was already on some anti sickness tablets before admission (due to side effects from other meds) but they didn't help, so I started on a different one and back on IV fluids.  I had a fundoplication surgery a long time ago (where they tighten bottom gullet to stop acid coming up) so I can't physically be sick.   This has its pros and cons - I can't get relief from the nausea, but at least I keep down fluids and medication! My blood sugars also went crazily high because of the prednisolone, but seemed to have settled now I'm back on usual dose.  

Sunday was also a difficult day as it was also Frances Ann's birthday and I don't think I have ever spent that on my own before.  I had been coping fairly well without visitors but really did miss this on Sunday.  I was able to make phone calls and video calls but its' really not the same - and in some ways made me feel more upset.   I had a fairly rough day with the nausea but passed my time with netflix and naps.   I must say the nursing staff in the wards were so lovely and amazing though and took time to chat to me during the day.

Monday came round and although I still felt very nauseated I was desperate to get home. Although it was a bank holiday luckily my consultant was on call, so she was in for a ward round.  It was agreed I could go home with anti sickness tablets and various other meds, with review back at clinic next week.

I didn't get home until early evening as was waiting on medication, but I was happy enough just resting.

Back Home

I've had a couple of days at home now and have been exhausted.  I finished the high dose prednisolone yesterday so hoping my sleep settles.  The nausea has been tricky but does seem a bit better today - they said it usually improves after a few days.   The main symptom at the moment is painful burning mouth/gullet.  It's really sore to swallow but I'm managing to eat some soft foods.  Even diluting juice is burning in my mouth,  but fortunately I do like milk, so mostly been drinking that, which is quite soothing.  I have a special mouth wash but they are going to get me something else as well.  It's been really tricky swallowing my many CF/transplant related tablets!  I'm managing to space these out a bit through the day though.  I am feeling really emotional, which is not my usual and keep randomly crying.  I think it all seemed to happen so fast and I've barely had time to process.  My brain feels so foggy as well - I keep getting dates mixed up and finding it hard to organise myself.   Luckily Andrew is there to get Estelle sorted for school etc and remind me what day it is haha.

What's next

As bone marrow is affected by the chemo, I might start to get a drop in white blood cells (fight infection), red blood cells and platelets.  So I start some injections for 5 days mid cycle to stimulate replacement of these.  I can do these at home though - it's just like my insulin injections.  I'll have to be super careful about avoiding infection - although due to covid I'm not seeing anyone, so that's not too different.   I got bloods for my anti rejection drug levels today and will have review at Beatson next week.   I will then be seen at pre assessment clinic on 14th Oct by the nurse - I think this is just checking bloods and making sure I'm ok for next cycle - which will be 16th Oct.  This will be done as day patient and all drugs will be given same day.  They did manage to give the drugs through a tiny cannula in my hand, so I'm hoping my veins can recover between cycles. 

The usual process is chemo every 3 weeks for 6 cycles.  However the plan is to give me another scan after 2 cycles to see how things are progressing.  Hopefully we will see some shrinkage at that point! 

And here ends that mammoth entry -which was largely for my own benefit to help process!  Life is pretty tough just now, but I'm positive we can get on top of this PTLD and get back to some degree of normality and stability.  Estelle is desperate for me to be well again, so I can "take me to the skate park" and that's my motivation and future goal!