Up The Farway Tree

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!