This is going to be a super short post as I don’t feel well but I don’t want to not give an update.
Basically third cycle of chemo was a nightmare due to heart rate issues. Was very scary on the night of chemo. Heart rate 127, banging away in chest, would not calm down. Triage line useless – go to A&E or GP as might be having a heart attack. When I did see GP he said if they really thought it was a heart attack the advice should have been ring 999 for ambulance. When I saw Chemo nurse a few weeks later she expressed surprised they didn’t bring me in to see Oncologist. Anyway my GP was great thank goodness. Gave me an ECG. Suspicion of atrial fibrillation, referred to cardiology, now waiting for walking ECG in April and another MUGA scan before next Herceptin. Hopefully these tests will find out what’s going on.
Also during cycle 3 problems with bone marrow injections again. Only given five this time after crazy neutrophil spike the cycle before, but on day 6 extreme agony again. I was crying out in pain (not my usual stoic self lol).
Anyway it was all too much. Husband was emphatic I shouldn’t carry on with chemo and I completely agreed with him. So we told oncologist at next appointment (new oncologist – very smiley) that I wasn’t doing 4th and final chemo but would carry on with Herceptin. He was fine with it – seemed like par for the course. I think all this treatment is very “suck it and see”. Offered me hormone tablets even though my estrogen score was 2 and progesterone score was 3 so also said unlikely to benefit me much. I asked about side effects. He told me. My jaw dropped. They were horrendous. Told him no thanks, just give me Herceptin & Radiotherapy please.
Now day 4 after 4th Herceptin and again have problems with heart rate. Last night at daughter’s choir competition I honestly thought I was going to have a heart attack. I was trying to be calm but I was scared. I’ve had palpitations for years and always thought there might be some underlying heart issue but nothing has turned up on any ECG apart from the last one and even that might just be ECG background noise. I know rapid heart rate could be due to anaemia and I know my iron levels are often low so it could be that too. Anyway eventually heart calmed down and I survived to see daughter’s choir came 3rd out of 5 (if I had keeled over I might have won them the sympathy vote but I might also have traumatised a chapel full of children for a lifetime – wouldn’t want that on my conscience!).
Meeting line manager tomorrow for coffee. I wanted to talk about phased return to work but last two days have made me realise I’m not up to it yet. Also not yet had Radiotherapy. Getting tattoo next week and then need to wait 6-8 weeks before it starts. Will be having 20 sessions. I don’t want to be off all this time but equally I recognise I have to be up to work (even on a phased return) and right now I’m not. I have started walking daughter to school ( a 20 minute walk) but today wasn’t even up to that.
Bottom line- I need to know was going on with my heart. Will be such a shame if I had those 3 awful cycles of chemo just to end up dying of a heart attack…!
This second chemo cycle has taught me a major lesson. Look into everything the oncologists prescribe. Yes they tell you to tell them what medications you are taking but they don’t actually do anything with that information. They type it in to their little forms and then ignore it. Probably (hopefully) in most cases that’s ok. But sometimes it’s not. And in my case it wasn’t when the oncologist advised I come off Ondansetron for my nausea and go onto Metaclopramide instead. This resulted in two nights of severe, awful, horrendous leg spasms that had me doubled up, weeping, in total despair. I have severe Restless Legs Syndrome. I take tablets every day for it which just about keep it under control. But it’s a knife edge. It doesn’t take much to upset my body chemistry and kick (literally) everything off. After googling I discovered that most anti nausea medication can greatly aggravate the condition. The only tablets I can take are Ondansetron. So I put myself back on it. I am annoyed at myself that I didn’t check the new medication before hand and I didn’t twig earlier. But equally what is the point of me telling my oncologist I have severe RLS if these things aren’t taken into account when prescribing stuff?
Also found out the acid reducing Omeprazole that he prescribed can aggravate RLS. It didn’t initially but after a week it was clear it was also causing problems (another night of no sleep, terrible spasms, me crying in my husband’s arms and genuinely not knowing how to carry on). I’ve read that reducing stomach acid can affect absorption of certain minerals from food – if iron or magnesium then that could be why my RLS was then worse. Or possibly reducing acid affected the absorption of the medication I take. Either way I’ve stopped the tablets and my legs are so much better
I’m not expecting oncologists to know everything. I have to be my own advocate. I have to protect myself. But they make such a fuss of finding out about your health and medications beforehand and then seem to do sod all with this info. And it scares me that I could be laid up in hospital, unable to speak (god forbid) and they could be pumping me with stuff that drives my RLS wild, sends electrical surges down my body every 6 seconds or so and causes me huge huge amounts of pain. And all because no one has double checked contraindications with RLS or remembered to give me my Pramipexole.
And continuing with the theme of “issues with the stuff the the oncologist prescribed”, he told me to continue with the bone marrow injections this cycle – 8 days’ worth. But my chemo was reduced by 20% so should my injections have been reduced? Seems so as on day 7 of the injections I felt awful – shivery, high temp and a nerve like pain in my pelvis whenever I stood up that was so severe I almost collapsed several times. So on the morning of day 8 I had my bloods checked (I had to fight for this, even though high temp and /or flu feeling is meant to mean immediate blood check for chemo patients in case they are neutropenic – the triage nurse husband spoke to wanted me to go to GP instead…) and it turned out my absolute neutrophil count was 87 when it should be between 1.5 and 8. Dr said I had to immediately stop the injections but I’d already taken 7 out of the 8 so a bit late (but again better late than never). Feel a lot better today. But all this is yet more stuff to talk to oncologist about in next meeting except it turns out my oncologist has now moved on and my next appointment is with a specialist nurse instead. Will be interesting to see how this goes. Quite frankly I’m angry about so much of how this is all being handled but in particular the total lack of interest in contraindications between what they are pumping into my body and what’s already in my body. Was so near to giving up again this week but this morning feel ready to fight on, to check everything they give me, to challenge what is advised/prescribed if I think they are overlooking something important. Someone said on another forum “Trust your oncologist, they know what they are doing.” Unfortunately my experience is that while on the whole this might be the case, when it comes to the needs of specific individuals with specific conditions over and above tumours and cancers this might not be the case. They are not gods. They don’t know everything. So it’s my job to work with them and give them the information they need. I just hope the specialist nurse and new oncologist understand and are receptive to this. I hope for their sakes I mean, as I will escalate if they are not. I will not be ignored. It’s my body and I will have my say.
I have my second session tomorrow. I’m not as nervous as I thought I’d be given how awful the aftermath of the first session was. I think that’s partly because the third week after chemo has been a lot better. Yes I’ve been exhausted and very headachy and I’ve had to shave off all my hair (it was falling out in clumps), but temperature has been ok, stomach bearable (and even better after oncologist gave me some tablets) and I’ve been told the dose will be reduced tomorrow. So feeling a little bit better about the whole thing.
I’ve been exploring options in regard to the hair loss. I bought a cheap wig from Amazon which I might get away with in very very dim lighting. The dogs bark every time I wear it though so I get the point. I also have a pink pirate-like scarf that’s okay for round the house but will damage the retinas of anyone who sees me in the streets. My preferred choice is a navy blue scarf with little diamantes on the front. I think it looks pretty but daughter says that when I wear it with my reading glasses I look like a very stern teacher. Not necessarily a bad thing but not the look I’m going for.
My shaved hair (about an inch on top, shorter at the sides) makes my chipmunk features and saggy chin even more pronounced. I hear chemo can kickstart the menopause and age your body by about ten years. It’s not looking good now – it feels like it’s going to look a damn sight worse.
But if chemo does the job and helps me live to a ripe old age, counting wrinkles with my beloved husband and seeing my daughter grow up to become the amazing woman I know she will become, then it will be worth it. I will cherish my saggy chin and chipmunk cheeks and every line that chemo brings because they will be a sign that I’m alive and kicking, and for that I will be eternally grateful.
So it’s been a pretty horrendous week. Ended up being admitted to hospital on Sunday (a week after my first chemo session) with high temperature and terrible stomach pains following a weekend of severe diarrhea. In hospital they put me on a saline drip and gave me IV antibiotics, Buscopan and paracetamol. Very happy to have the saline drip and antibiotics but not the drip machine though – the alarm kept going every time I moved my arm due to the placement of the canala. If they know this placement causes problems why don’t they change where they place the canula in the first place? Also very unhappy with the Buscopan and paracetamol as the former didn’t work on stomach unrest and latter did not work on pain. I told them this several times but they continued to give it to me until I point blank refused the Buscopan and cried so much with pain they gave me Oramorph. I don’t think you should have to cry with pain until effective pain relief is given but there you go.
Most of the nurses there were lovely and really looked after me. One nurse clearly hated me on sight and acted as if I was a demanding guest in the world’s most exclusive hotel when I dared ask when the pain meds were coming. I sometimes felt judged – perhaps the fact I still have my hair and don’t yet look like a cancer patient made them think I shouldn’t have been on an Oncology ward? Certainly there were other people there much sicker than me. But I had not wanted to go into hospital in the first place – it was the Triage nurse that had insisted I come in Sunday night and the Doctor that examined me who decided to admit me. So what was I to do? I did not have much say or control. Anyway after three nights in hospital, once my temperature stabilised, I discharged myself even though they said that wanted to keep me in an extra day for observation. I was desperate to get home.
I’ve now been out of hospital a day and a half and do feel better. I’ve also done some research on this site and it seems that with my Grade 3 Her2+ tumor my likelihood of surviving 5 and 10 years increases significantly with chemo and herceptin and means I really don’t have a choice but to continue. I have to talk to the oncologist about the dose though and about what I can have at home with me to better manage the side effects. Hopefully this will help me with the next cycle.
I feel trapped and scared and my stomach still hurts and my temperature is still spiking on occasion even though I’m on paracetamol and antibiotics. I feel sorry for my poor old body. I feel my hair starting to change and I know it’s going to fall out in the next few weeks. I’m crying a lot, irritable and snappy. I feel guilty my daughter is seeing me unwell. I see her growing closer to her father and pulling away from me and this makes me sad. My insomnia is still an issue so I’m constantly tired and worn out. I’ve hardly eaten but not lost any weight which is a particular irritation – lol. When I can I’m coding and doing some blogging about my coding over on Medium which is good. I’m trying not to let this beat me but I’m scared about the next few months and sometimes think my body is just going to pack in before I even get through the treatment. But then I pull myself together and drink a cup of tea (the nausea has subsided thank goodness but my taste buds have pretty much gone) and I think, “Just take it one day at a time.” They say whatever doesn’t kill you makes you stronger. We’ll see.
Had first chemo Monday. Not up to typing much today but wanted to capture the main side effects.
- The anti nausea steroids I took the day before, day of and after chemo gave me terrible acid reflux so I struggled sleeping each night. I thought this was bad but little did I know…!
- The day of and day after chemo I felt ok. As day progressed felt a little fluey but that’s all. Thigh bones were aching but they often ache when I’m tired. Blood tests before chemo identified I have low neutrophils so need 8 days of injections. These started Wednesday.
- The second day after chemo (Wednesday) felt dreadful – basically felt like I’d been beaten black and blue. Everything hurt to touch and I felt puffy and swollen.
- Thurs felt the same as Wed but with added problem of really high temperature. The triage line wanted me to go into hospital in the night for blood tests. We agreed instead to go in the morning. I was shivery and had some vomiting.
- Fri had blood tests. They were fine – no infection. Perked up a bit in the afternoon but back to fluey, shivery and sick in the evening. Throughout the night had diarrhea and vomiting.
- Today – stomach constantly hurts and have headache but I’m typing so that’s something.
The whole experience has made me doubt my decision to have chemo. I’m having it as a precautionary measure and because I’m having herceptin. The oncologist said they don’t actually know whether anything escaped from the tumor into my blood and I might be having chemo unnecessarily. I had clear margins when tumor removed and nothing found in lymph nodes. As a precautionary measure this feels too much and I need to discuss this with the oncologist.
But not felt up to writing. No idea why. But today I thought it was important to get something down as tomorrow I have my first chemo session. I’m feeling ok about it. I just need to get through it & hopefully not have any side effects when I’m there and not feel too bad afterwards (although I expect the latter is unlikely – I’m going to feel like crap). I’m hoping I’m still up to coding and Hearthstone. If I need to sleep I hope the pramipexole/chemo combo doesn’t cause any contraindications because if the pramipexole doesn’t work and I cannot sleep it’s game over. I cannot cope with my RLS without pramipexole. I just can’t.
So I’m a little apprehensive tonight and kind of wish it was already tomorrow night and that I’d already been, gone & done it. But I know I just have to take it step by step. It will all come to pass.
So today bookmarked 500 Greatest Albums of all time & 200 Greatest Novels of All Time and asked Alexa to give me two random numbers to start me off and as a result I am currently listening to The Miseducation of Lauryn Hill and just about to read Martin Amis money. Both things I wouldn’t have thought about selecting. Good to try something new. Think I might be turning into The Diceman though,
Still can’t sleep. Going to see Dr tomorrow to see if they can give me something.
Oh and chemo starts week after next. Strangely excited about this.