Sunday, 27 December 2009

Week 9 / 10 / 11 – Recover from Round 1

Week 9 / 10 / 11

Once home its basically about a week or so of feeling hollowed out, sick, tired, weak, feeble. I thought I was getting short of breath at times, but when I saw my doctor my lungs appeared fine. I think this was anxiety actually…the feeling of panic whenever I started to think about my breathing...

It’s a pretty horrible week or so but manageable, I’ve had worse hangovers, although they have never lasted a week!...The second week things start to ease up, but the anxiety/breathing issue still crops up during the day occasionally…

By the third week at home I’m feeling pretty much back to normal…all the while I'm having acupuncture once a week which I have no doubt helps considerably.

About 15 days after the treatment began I noticed my hair falling out one day in the bath…my hair’s pretty short anyway so it needed me to tug at it, but then clumps come out…it’s a very weird feeling…and even though I’m not too worried about my hair it was quite distressing, like you’re falling apart or a radiation victim from “When The Wind Blows” ( a very bleak story about nuclear fallout)
So I shaved it all off, grade zero.

My biggest concern through all of this period was “Is This Actually Working” – a CT scan the day before round 2 will tell me.

Thursday, 3 December 2009

End of Week 8 – Another ‘deposit’ and then it begins!

End of Week 8

I spent the last few days frantically trying to find out where I can make another deposit just in case of fertility damage. I paid for the first one privately and it’s pretty expensive to maintain on a yearly basis, I should be able to do this for FREE on the NHS surely!

I now realise the risks are quite low, AND I have already been through all this once BUT, IF the worst does happen I want to be covered!

It was OUTRAGEOUSLY difficult to find out how and where you can go for sperm freezing on the NHS. My GP didn’t know, promised to come back to me once he had done some research and in the end didn’t. I called NHS direct who were friendly and did their best but the ‘best’ was to suggest somewhere hundreds of miles away from me. I live in fucking London for fuck’s sake!

In the end it was my Oncologist at Bart’s who was able to advise me on this, and I went ahead and did it at Barts. It was a rush, they need to check your blood for disease etc which takes a day or two, then book you in etc etc…anyway, I got there just in the nick of time, the day before chemo was due to start. Another pleasant experience of jerking off in a hospital! Lovely!

I guess making deposits in separate places might be going overboard, but I’m not going to let my future be determined by the possibility of some arsehead switching off my fridge at some point down the line…

Round 1 - Friday
Funnily enough I had actually started to kind of look forward to going in for the chemotherapy. Everything I had lined up to look forward to had been cancelled, this was going to be an experience to remember and I wanted to get it started. Plus I was intrigued.

Checked in at about midday…followed by a day of blood samples, cannulas being inserted into my veins, waiting, more waiting…some sitting around..

Finally they hooked me up at 7pm. Started with a dose of steroids and anti nausea drug intravenously. Then chemo. One in each arm.
This is how I remained for the next 4 days.

Day 1 was fine (dexamethasone [steroid] + kytril [anti-nausea], 2 hours Etoposide, 4 hours Cisplatin, saline etc x2 over 8 hours each, 24 hours Bleomycin in the other arm). I ate during the day, no problems.
Day 2 “Bring it on!” (same again) - by the end of Day 2 however I had started to feel somewhat nauseous. I had eaten again quite normally.
Day 3 (just the Etoposide and Bleomycin, no Cisplatin thank god, that’s the worst of the 3) they didn’t give me the steroid and anti-nausea intravenous this time. I lived to regret that!…the night of day 3 was the worst I felt throughout the whole ordeal…I woke in the night feeling SO SICK. It’s a weird kind of sickness, like nothing else, hollow, acid in your throat, just horrible horrible sickness throughout your whole body. BUT it was manageable, it could have been MUCH worse I’m sure, and its just a matter of being on top of the sickness. Eating today wasn’t very appealing but eating SOMETHING does help get rid of the sickness I found..
Day 4, tired and pretty sick feeling still but just a few more hours of Bleomycin left and that one is not so bad.
Once it was finished I ran a bath. I was on the phone and started hallucinate that my floor was pulsating. It wasn’t. I forgot about the bath and had flooded my room. Ho ho. Sorry nurses. I moved to my third room of my stay!

In addition to the drugs listed above, there was also a selection of further anti-sickness drugs that were administered at intervals to try to keep the nausea under control. Domperidone was the predominant one…but there are lots, some work better than others for each individual…
The Kytril, or granisetron, acts on the serotonin receptors in the brain, my understanding being that it effectively tricks the brain into thinking it doesn’t feel sick…other options that work like this are Ondansetron (Zofran), Tropisetron, Palonestron…
Other, maybe more traditional, anti-sickness drugs work on the actual digestive tract, making sure that nothing can move upwards (i.e. being sick!)…this goes for Metochlopramide
…or the antihistamine, or motion sickness route…such as Cyclizine, Hyoscine
Or sometimes I’m told sedatives are used such as lorazepam, haloperidol..
A very new option, called Emend, works via substance P inhibition, i.e. a specific receptor in the brain…again my understanding being it tricks the brain into not feeling sick…

My understanding of the dexamethasone (steroid)is that it helps by enhancing the effect of the other drugs on the body and helping the body to strengthen itself…

Please note these are my understandings of how these drugs work, but I found it helped to have some idea of what was being given to me and how they worked…it also helped me keep track of what was working better than other things, and to remember that for each treatment. This list was actually sent to me before I went in by a friend (a friend of a friend in fact to give her the credit rather than him!) -it was really useful and very much appreciated so I would advise people doing the same..

I went home feeling like shit but very pleased to be out of there and to have got round 1 out of the way fairly unscathed. It did hit me on day 3 which was a bit of a worry. I woke up feeling really down and depressed that morning, the worst thing I think was that very slim chance that the cancer wouldn’t respond to the treatment. This doesn’t happen often with this cancer, but it can do, and with other cancers I think the outcome and effectiveness of chemotherapy is more uncertain. This is tough…not knowing whether this bleak experience is going to cure you or not.

They packed me off with less than a week’s supply of anti-sickness pills…(I felt a little uneasy I might run out so spoke to my GP and got a repeat prescription. Turns out I did need more than originally given, but I stopped taking any anti-sickness pills as soon as I felt I didn’t need them…by about a week after coming out)…I was also given 10 days worth of antibiotics to take day 10-20..

Week 7 - Oncologist (Cancer Specialist)

Week 7
A very stern conversation. Halfway through I start to panic – THIS IS HORRIBLE.

“You will be having 3 courses of BEP – Bleomycin:, Etoposide, Cisplatin”
(links to further details in the reference section)

It had been mentioned that I would probably need 3 courses…I figured this meant chemo over 3 days. It turned out to mean 3 days (in fact 4 days as the Bleomicin was 3x24hrs)…x 3 courses…with 3 week intervals between each start date. So 9 + WEEKS!

“You will experience Nausea, although this can be pretty well controlled with anti-sickness medication. You are very likely to have some Hearing Damage; nerve damage resulting in tinnitus, upper frequency hearing loss. Lung Damage, some scarring is possible but we will keep a close watch on this. Hair loss, you WILL loose your hair. After about day 10 from the start of the chemo you’re immune system will plummet; white blood cells, platelets, even red blood cells eventually – this means if you get sick, catch a cold or some other illness your body has nothing to fight it off, you can die from this quite easily and must have the 24 hour oncology line for whoever is treating you so they can advise you to be rushed in to hospital to be treated urgently. Skin rashes and irritation. Fertility damage (I was pleased to hear that this was actually less likely than I thought, I still made plans to make another deposit elsewhere from the first to be safe).

I’m sure there are many more…everyone reacts differently.

The strict diet regime continues…