16. 8th - 27th June 2021 - Baptism of Fire Part 1

I have been given a little booklet to record each chemo cycle. It contains loads of information about side effects and how to mitigate them. It’s set out really clearly and is very helpful but also more than a little scary seeing it all there in black and white. The first page gives a traffic light system for the more serious side effects and these range from dialling 999 immediately for symptoms such as chest pain or difficulty in breathing to calling the Acute Oncology Service (AOS) for pain and nausea etc. The most important signs to look out for are any relating to Sepsis, which I have detailed in a previous post. In this respect I have also bought a digital thermometer and check my temperature 3 times a day.

The booklet also has a number of tables to be completed each cycle. Chemo is counted in days, so Day 1 is the day of chemo going through to Day 20 for my 3 weekly cycle. I have to document any side effects as they happen to look for patterns and to help manage my symptoms throughout the 6 cycles. My introduction to chemo and its side effects is as follows:

Day 1 - A disgusting metallic taste in my mouth - it makes most things taste vile.

This will last almost the whole time but, I have now found that it can be

relieved with fresh pineapple which just tastes delicious and juicy.

Days 2 & 3 - Red flushed face and insomnia from the steroids.

Fatigue - I can’t even describe it - just totally exhausted - yet unable to

sleep at night due to the steroids!

Days 4 & 5 - Sore tongue and mouth - it feels burnt on the tip and I think I

probably have oral thrush - my whole mouth feels hideous.

My abdomen is bloated and really sore and now I am also constipated.

Joyous! I am really feeling quite poorly as all the side effects are

compounded. I have had my final allocated anti-sickness meds and have started the Filgrastim to stimulate my bone marrow.

I spend the day lying on the sofa trying to get comfortable. I am anxious as to what the next few days will bring and I think it is starting to hit home that this isn’t going to be a quick fix and I’m in it for the long haul. This is hard to accept and there are so many emotions flying around right now. I know I am better off than some and I have a great support system and I will get through it, but it is really hard. Sophie helps me practice with my wig and we try it with various hats and scarves. I feel a bit better about it now and feel it looks less wig like. I feel a bit better on Day 5 and managed a short walk with the dogs.

Days 6 - Today has not been a good day. I woke up around 3am in so much pain. My stomach is really distended (I could be having twins), my head is pounding and my mouth is so sore and dry. My temperature seems normal so I don't want to call the AOS especially as it’s the weekend. I call 111 at 8am and after being pushed from pillar to post for hours I eventually get an appointment with the Out of Hours (OOH) GP at 2.15pm. I have to say that I am in so much pain and feel so dreadful I’m not really aware of what is going on. I just have to find a comfortable position and then not move, I’m not really interacting or making great decisions.

Mum drives me to my appointment but can’t come in due to Covid restrictions. I practically crawl into the waiting room and the receptionist takes one look at me and grabs a wheelchair and takes me to a side room away from the other patients. She then goes to find my mum to come and stay with me which was so lovely of her. The OOH GP eventually arrives and finds me curled up on the trolley as I couldn't manage to sit up at all. She is happy with my temperature and says all my obs are normal. She prescribes Oromorph for the pain and Nystatin for my mouth. She says that if I can’t get on top of the pain I will need to go to A&E for IV pain relief. I get home and eagerly take the Oromorph, hoping it takes effect quickly - I can deal with the distention but not the awful pain. I am struggling to eat but find that sucking ice lollies helps my mouth. I receive a barrage of supportive messages from my family which really help and I go to bed praying that tomorrow is better.

Day 7 - I do feel a bit better today, the pain hasn’t gone completely but it seems to be more manageable. I woke up every 2 hours for a drink and a wee which is annoying but my mouth is so dry and sore the drink is needed. I am managing dry biscuits which I hope will soak up some of my drug cocktail. I am still taking Domperidone for nausea, Colpermin and Buscopan for distention and paracetamol and Oromorph for pain plus the Filgrastim for my Neutrophils. Sophie helps me have a bath and hairwash as I am too wobbly to manage on my own. This makes me feel fresh and clean although as the day progresses I’m not feeling so great. I spend the day on the sofa, tired and uncomfortable and a bit ‘out of it’. My temperature is still normal so I just hope that these symptoms will soon pass.

Day 8 - This is another day very similar to yesterday. I know my mum is really worried about me - I really am not very well although my temperature is still normal. I get a call from the AOS nurse who is aware that I have been seen by the GP - she is concerned at how bad I am feeling and wants me to go to A&E. I am obviously not thinking clearly and refuse, but I promise that if I get worse I will. Later that day I start shivering uncontrollably - I have no idea why this didn’t ring alarm bells - I can only assume I was not of sound mind! I feel such an idiot now but I was just in no state to make good decisions! That night the diarrhoea starts and at 1am I start vomiting. This is what illuminates the red light in my head. I remember reading that vomiting is on the Red list and I feel so awful that for the first time in my life I dial 999 and call an ambulance. I wake John and he helps me pack a small bag and gets me downstairs to collapse on the sofa. The ambulance arrives within 40 minutes and the paramedics are awesome. I can see they are worried about me and once they check my obs and get a line in, they insist on taking me straight to A&E. They transfer me to the ambulance on a blue light but explain that the hospital is very busy and I may have to wait for a space as I must go into a private room due to being on chemo. One of the paramedics pops in to speak to someone, she works her magic, and within 10 minutes I am on a trolley in a private room waiting for treatment. At this point I am feeling so ill I’m not sure I even felt scared, I was probably more worried at leaving John at home and him having to tell the family - not nice for them to wake up to and I wasn’t sure when I would be in a position to update them all. So I lay there and wait and life carries on.