I was reading through my blog today and realised I’d missed things out which perhaps might be useful to someone reading. Now that I have more energy and more time I might as well fill in the blanks.
Chemotherapy. I’d heard about it, read about it and been scared by it. But I never imagined my body not being able to handle it. Yes, it has horrible side effects and makes people very ill but I’m in that small percentage group of people who have an enzyme deficiency (I can’t remember the exact words, I was in a right old mess) to the chemotherapy I was on. I thought that I’d be moved onto another sort of chemotherapy – I’d heard plenty of names, so assumed I’d get another go at something else.
I was on Capecitabine which I took orally every morning & evening. Then every Tuesday I’d have Irinotecan by IV at The Guildford Clinic.
I started the Capecitabine on Monday 7 February 2011. I also had my first dose of radiotherapy that day. That night I went to bed feeling sick, achey and cold but put that down to nerves and worry and generally not being very healthy at that moment in time.
Tuesday 8 February I have my first batch of Irinotecan by IV and reflexology at the same time. I also wore a cold cap to try and keep my hair from falling out. I looked ridiculous. My parent’s are usually the first to laugh if I’ve done something stupid or look ridiculous. That day they didn’t laugh unless I did.
I got through the IV OK and was eventually able to go home. It’s quite time consuming IV chemo and radiotherapy. It took up most of my morning and early afternoon. Thankfully that was only booked for once a week.
That week I carried on as usual, although at a slightly slower pace. The sickness was still there though. I had anti sickness tablets but they weren’t really doing anything. I ‘phoned the oncology ward and they suggested I go to the ward the next day and see one of the nurses about other anti sickness drugs.
By the weekend I had lost half a stone in weight and had a very peculiar feeling in my throat. It felt like something was stuck and irritating my throat. I was still feeling sick but trying to carry on.
On Monday 14 February 2011 I visited the chemo ward where they took my bloods to make sure I’d be OK for chemo the following day. They’d also order it in so I wouldn’t be waiting around for it to arrive. While I was there I discussed how I was feeling and explained the horrible throat I had. The Dr saw me and asked me a few questions but was pretty useless. Didn’t have much to say and left me wondering if I was being a drama queen. I was given new meds to help with sickness though. My Oncologist expressed concern over my blood results and said I wasn’t exactly on top form. They’d be keeping an eye on me, but weren’t 100% convinced I should have IV chemo the following day.
The following day I went back to the ward for my IV chemo. The staff were very reluctant to let me go through with it, but I assured them I was ok. I was determined to not feel too rubbish so early on. I’d only done a week. I had the chemo, then went off for radiotherapy.
Wednesday 16 February 2011 I had a meeting with my Oncologist. Traffic was bad and I was running late. I swore down the phone at the Sister from the Ward and cried all the way there. I was feeling rotten. Oncologist stuck around and I apologised to everyone I’d shouted or sworn at. I felt like the worst patient in the world. The calm quiet cancer ward had been disturbed by the psycho woman The Oncologist then explained she was still worried about my reaction to chemo. She wanted to check how I was feeling. I tried to play it down, and made out it was still nerves.
It wasn’t until Thursday 17 February 2011 I realised I had to be a bit more honest. I’d been for a healing therapy at the hospital. I thought it would take my mind off things. Instead afterwards I ran to the toilet where I experienced diarrhoea. From warning sheets and talks from the staff at the chemo ward I knew I had another 3 diarrhoea toilet trips before I had to tell someone. So I went home. Where I tried to feel normal. That evening things went from bad to worse. I was being sick and had diarrhoea. My mum ‘phoned the ward. They suggested I don’t take the chemo tablets that night or the following morning. I was to go straight to the ward first thing the next day. Don’t have radiotherapy.
Friday 18 February 2011 at the chemo ward I was taken into a room with a bed and I curled up because I was freezing. I was exhausted. I felt sick and I was frightened. I was put on a drip and covered in blankets. No one really knew what was happening. I was just pleased to be somewhere safe and warm. Bloods were taken and again a Dr came to check on my dodgy throat. It had got worse. Now my mouth felt funny and flakey. He asked me to open my mouth and he and the nurse both gasped. “Thrush!!!!” I was mortified and confused. They’d failed to warn me that this can happen due to all the tablets I’d been knocking back. At least I wasn’t imagining it.
Not long after my parent’s were told I was being admitted. They needed to keep an eye on me. Chemo was being stopped and radiotherapy too. Bloods were showing I was very weak and I was only getting worse. I remembered thinking “Well, what the hell do I do now? I need treatment surely?!” Oh and my temperature had gone through the roof even though I was absolutely freezing.
So once I was taken to my room I was able to just lie there. It was only then I really noticed how weak I felt. I didn’t care what was on the TV. My parent’s were in a right old mess. We didn’t really know what was going on, but we knew thing’s hadn’t gone to plan. My Oncologist’s face was a picture.
That weekend I was given my first blood transfusion. Oncologist wanted to give me a pick me up. She was hoping it would sort me out. It didn’t touch the sides. I still felt the same. I was wired up good and proper. I had cannular after cannular. My poor veins took a battering. I had syringe drivers in the tops of my arms, and then eventually in my stomach. Pumping me full of anti sickness drugs. I had all sorts of IV meds – I think at one point they gave me something because my heart was weak or the drugs were making my heart weak. That day I was put on HDU, but couldn’t go to the ward because they were concerned about infections etc so I was now living in my room, with a nurse sat at the door watching my every move. Friends and family that visited were told to wear aprons or not allowed in. I never saw the point… When it was just me and the on guard nurse we’d talk. Me mostly asking them questions. “Are you bored yet?” “Is anything interesting happening?” “Will you tell me off if I take my oxygen mask off?” Can I close the door when I use the commode?” I think they celebrated a little bit when I eventually came off HDU.
A week later I was still in. I was in a bad way. I was on the loo pretty much every minute of the day. I couldn’t eat. Yet green stuff was pouring out of me. The nurse was horrified when she came to check my IV one evening and she asked “How many times have you been tonight?”
“Oh 37 times since you last asked” which wasn’t that long ago really as they never left me alone.
I had accident after accident because I couldn’t get to the toilet in time. I cried from exhaustion. I was no longer embarrassed about being half naked or unable to go to the toilet by myself. I would shout loudly to any visitor “If I need to go, I need to go. So you either run to the corridor or you witness what I’m dealing with”. To be fair they all ran to the corridor apart from one mad friend – although she said she could be excused because she has a nursing background. I still remember telling her off though while I tried to go to the toilet with company.
My veins had taken a battering and I need bigger and stronger veins to take the IV meds I was due to have. So they fitted me with a groshong line in my chest. Now that and a NG tube are up there with evil.
Exactly two weeks after being admitted I had my second blood transfusion. Oncologist wanted to perk me up before being discharged. I’m still not sure if I felt the benefits.
I went home on Friday 4 March 2011. Finally my bowels had calmed down and I wasn’t being sick. My bloods were all OK again.
My Oncologist explained that I was basically allergic to chemotherapy. At first I thought I’d be given a different type or dose, but she [Onc] went on to explain that I was on a weak form of chemo anyway and a low dose. There wasn’t an alternative for me. I was only allowed to restart radiotherapy once my bowels had calmed down and the MRI scan showed that my bowel had calmed down. I was inflamed internally which wasn’t helping.
How did I feel when I was told it was being stopped permanently? Gutted. I felt like it was game over and they’d just make me comfortable. Nothing they could do now. I cried privately and panicked. Surely it couldn’t be over?
My Oncologist noticed how I was the following day. She asked how I was feeling and it all poured out. “I’m being left to die”.
She then calmly explained that yes chemotherapy is treatment, but actually radiotherapy is what I need. It will do 70% of the work. Chemo is a nice back up to have. Really? A nice back up? Hmm. Yes, a back up perhaps, but not nice…
She seemed confident that I’d get through everything without chemo. She did warn me though that I wouldn’t be offered it after the op, which was the original plan. Kill off any potential cells. That’s what bugs me. I don’t get that extra bit of insurance.
Looking back at what’s gone on yes I’m mortified I didn’t have chemo. Yes in an ideal world I’d happily suffer whatever is required to get me well again. But this time it’s not allowed. I worry about the future of course. I worry about cancer returning and if so, what happens then without the chemo option. It’s one of my biggest worries and something I have to discuss properly with my Oncologist the next time I see her. Then for a brief moment I remind myself some people have fought cancer without chemo. So again it’s positive, negative, positive, negative that I battle with.
Some people assume because I was allergic to chemo I wouldn’t experience the side effects that the info sheets warned me about. Actually I got pretty much all the side effects. My hair started falling out approx. 2 weeks after chemo started. Dr explained that the body was under attack and even though chemo wasn’t agreeing with me it was still working in a bizarre way, but it was just having a real good go at finishing me off. So she wasn’t surprised when I showed her my hair in my hand, or my cracked hands and feet, mouth sores and moaned about not being able to taste anything. Typical.. I’m allergic and taken off it but I still get the side effects! I must have been a horror in a previous life eh?