Weeks 21 - 25: Thursday 13 April - Wednesday 17 May 2017
Ok... first off, apologies... this is a mammoth update as it covers the last five (yes five!) weeks of my treatment.
I will start off by saying I am still alive (always a bonus), but the reason I have not written for the last 5 weeks is because I have had a fairly rotten time of it, and I didn't want to write when I was feeling crappy - otherwise I am pretty sure some people may have thought I should be carted off to the nearest soft padded cell!
I write this a few days before my next and final chemo - so that will be subject to next week's update - but great news is that I am awake, alert, positive and looking forward to going down to stay at my sister's for some beach weather and chilling out in 2 weeks time 😀😀😀. (Wearing the pre-requisite cover up shirt, floppy hat and Factor 50!!!)
So where to start? Well, 6 weeks ago I had my chemo changed as per the original plan. So that was a switch to the chemo known as doxataxel. However, given the medical team now know I have the BRCA 1 mutation, they also decided to add in carboplatin. This is a chemo drug which is also used to treat ovarian cancer, so I am guessing this really is belt and braces approach at the moment. (I now know more than I did when I wrote my last blog lol!)
Anyway... thought all was going well - I got through the chemo with no allergic reaction whilst 3 other people on the unit each took an allergic turn and had to get emergency antihistamines... I was feeling quite smug...
Got home and basically slept for a few days, and thought all was going to be clear for the Easter weekend. How naive of me lol 😱😱😱.
Easter Sunday I started vomiting, and it did not stop for days... to the point where mum had come to visit on the Tuesday and immediately took me to hospital. With hindsight I perhaps should have phoned the chemo hotline sooner - but I genuinely thought it was going to pass, and I really didn't want to make a fuss 😱.
Taking me to hospital, poor mum was really quite worried - I could hardly walk or stand up for being so weak, and she ended up having to get me a wheelchair to take me from the hospital entrance to the emergency medical admissions unit up on the second floor. (On a side note - who puts an emergency medical admissions unit on second floor at back end of hospital, which takes ages to actually get to?!?!)
Anyway... to cut a very long story short... I was dangerously dehydrated, and it turns out that the chemo had also done nasty things to my heart and my liver. So I had to go on various drips for 24hrs including magnesium and potassium. Which, just for the record, are exceptionally sore going in through my arm!!
Also, despite them giving me three different anti sickness medications, I was still being sick through them... as there was no bed immediately available when I first went in, I had to lie on a narrow gurney for about 6hrs before being formally admitted... and I went through an awful lot of sick bowls in that time 🤢.
Once admitted, I was trying to persuade my mum that she should really go and get some lunch, not actually appreciating that she might not fancy anything after watching me throw up all day... oops 😜.
I had seen various doctors over this period, and it turns out that my heart was slightly misfiring and basically was skipping heart beats for a little while, partly due to the lack of essential salts in my body I believe. And my liver was inflamed, as were the rest of my internal organs, basically due to me being sick so much.
So... ultimately I got a bed on a ward.... and then I got shifted again at 10pm that night to another ward due to an influx of people coming in via A&E. To be fair, I just kind of got pushed around in a daze so it didn't bother me much at all.
I also got sent for various scans at this time, because as they said to me, it would be a bit unfortunate if they overlooked something simple like gall bladder issues whilst they just focused on cancer-related stuff! (Thankfully ALL of this is actually just chemo related... my body just really does not like it 😱.)
The nursing staff during this period were definitely mixed. There were some really lovely nurses who really took time to check in on me and then there was another one who said there was no point in knowing my name as she was not going to be on shift for days after that day... the inmates on this ward this time were another interesting bunch too. Especially the woman who had 10 visitors to her bed at each visiting session!!!
Unfortunately that was too much for the nursing staff to bear and had actually asked some of the visitors to leave... and they didn't. So of course, it really didn't help when I needed to go to the toilet and the visitors had blocked the passage to the ward toilet.
I actually did the decent thing and just asked if I could use another toilet on that floor.... but the staff nurse was incensed with indignant rage by that point, so she marched up to the extended family visiting and pointed to me and said that they were stopping an ill patient from going to the toilet and they had to leave immediately as it was only allowed two to a bed for these kind of reasons. Cue the mortified patient btw. I would really rather the ground had opened up and swallowed me at that point 😱😱😱.
Anyway... I eventually got out out of hospital later that evening.... having then managed to forget my drugs. So that required Dave to go back to hospital the following day to collect them - bloody chemo brain!!!
The following weekend, Irish Sue came across, and she was a great tonic to my crappy week. It was definitely a much quieter weekend than we would normally have had, but she really cheered me up when things were getting on top of me.
Unfortunately, this was also the weekend where Dave had a bit of a drunken blowout at the football... and it was linked to him not coping with me having cancer. This actually led to many weeks of angst for both of us, as I knew he was not coping but equally, I could not cope with him as I had my own sickness and rollercoaster of emotions to deal with.
Anyway... he went to speak to a counsellor at Maggie's Centre who are experts in helping carers deal with their concerns, and it was the best thing he could have done. For instance, he got told it's ok to feel resentful to the world about how things are unfair. It's also ok for him to be pissed off at me when I am grumpy or treat him like crap. (On a funny note, this may give me license to be really grumpy now lol 😀.). I also now realise that he and mum are the only ones that see me at my sickest and lowest ebb... everyone else I generally make sure I am upbeat and positive - as I generally am... but I don't make that effort when I am home alone with Dave - because I am basically knackered.
Please know - I only include this info here as I know other people who are dealing with cancer may be facing similar situations with their partners / family / carers. Basically Dave has had many offers of support and chats and help from loads of people... he just kept saying he was fine, but I knew he was not. (Of course, I did feel kind of sanctimonious when I told him that "I told him so", but I will try not to gloat.)
Basically being a carer is hard. And I do get that. And for any other people going through this, it is an unenviable task... just to give you a flavour of home life...
Literally, at my weakest moments I can't do anything. I can't currently even walk my dogs for more than 10 mins as I am absolutely shattered and end up having to sit down in a crumpled heap. I also can't do any housework as I can't lift anything more than a bag of sugar, and I also can't be exposed to a multitude of germs, dirt or bleach. I also take it in turns to sleep in all 4 different beds we have in the house depending if I am too hot, too cold, too sweaty, sore bones, sensitivity to light or noise.... and that subsequently means there is a lot of laundry that needs done every other day from the night sweats. Then there is the whole cleaning of the bathrooms after every time I am sick too... so, as I say, being a carer is not easy.
I don't actually think I have been that demanding a patient, and I certainly have tried not to be stroppy. But this past 5 weeks have been particularly difficult as I have had no real good days, as opposed to the first 12 weeks, where actually I was only sick for 4 days out of each 3 week cycle.
Also, this chemo - my taste buds are definitely all over the place... everything tastes like cardboard, my mouth was sore and I couldn't eat anything dry or sharp, and to be honest, most of the time I have been living on ice cream and lollies in order to get calories into me and soothe my throat. It can make me seem somewhat ungrateful when I reject plates of prepared food made with the best of intentions... 😔. Also, I really do suffer from unexplainable and irrational chemo rage - about anyone that may annoy me (or that I perceive annoys me - see references to paranoia and hallucinations!). And this comes with NO way of rationalising it or de-escalating it. Those are the days I put my head under the covers, turn off all technology and refuse to speak to anyone like a toddler in a massive tantrum.
Anyway... the following weekend from Sue's trip over, Dave and his mum went on a pre-planned trip to Rome, which was booked at my insistence the month previous. The reason for this, to be quite blunt, was despite the fact that we are married, I can't stand being around Dave for 24hrs a day, and I am sure the feeling is mutual, and I knew that he needed a break - as did I lol.
However, given that I was still a bit 'wabbit', my mum and dad moved in for 4 days to babysit me. And to be honest, I am eternally grateful that they did. I actually ended up doing nothing but sleep for 2.5 days, with interjections from my parents bringing me up food and drink. On the 3rd day I was less shaky and got up and we went a drive to go and have a Diet Coke at a local pub, to sit out and get some fresh air in the beer garden. I still got tired easily, but it was definitely of benefit to actually get out and see daylight 😀😀😀.
Unfortunately being in hospital had delayed my consultation with the breast surgeon, so that took place the following week... and it was fairly momentous. I had done loads of research before I had gone in (even the squeamish inducing technical details of surgery 😱), and the surgeon was great. Calm, confident, matter of fact and asked me if I had had enough information and had I come to any conclusions. So no time wasting or dumbing down of things.
Basically I have opted for double mastectomy with immediate reconstruction.
I need to have further meeting with the plastic surgeons, and then they are hoping to get me in for actual surgery after my chemo recovery period - maybe 3 or 4 months time depending on surgical team availability.
It's going to be a big operation (nothing to do with size of my current chest!), and will take 2 plastic surgeons as well as the breast surgeon to do the surgery, and they need an operating theatre booked out all day. The surgery itself may take anything between 8 and 12 hours I believe.
(The technical detail around micro vascular surgery is fascinating btw!)
On the upside I will get a free tummy tuck, although recovery period might be anything from 3 months plus. But at the end of the day, it look like I get to choose what I want my final body shape to be! (Angelina Jolie perhaps lol!!! 😀😀😀)
There still needs to be lots of in-depth discussions about nipple placement (!) and the need to create a new belly button for me, and it's not just going to be the one operation... but the good news is that these type of operations are done all the time, with great success.
So... overall I am happy with the decision, confident in the surgical teams and probably keen to get moving asap - but I also recognise I am still under the influence of chemo, and I also have second surgical consult at beginning of June to discuss removing my ovaries and tubes too... that 'should' be keyhole procedure, done and out in a day, with about 3 weeks recovery, so here's hoping...
At the the end of this, as long as I don't look like Frankenstein's bride, that will be a bonus! 😄😄
Also during this period, I was supposed to be going back to physio to check progress on my arm cording and my sore hips. Unfortunately, when I turned up, the chemo had really wracked my body and I had bone pain all over, so the physio could not tell if the exercises were working as everything hurt and everything was out of alignment... so basically I now have an open door to go back when I finish chemo whenever I want and we can start afresh once chemo is out of my system.
The other thing about this chemo which I not properly taken on board, is that it seems to have a cumulative effect... so whilst I am being blasted with really aggressive doses of chemo, I am never quite getting back up to healthy levels each time I go back... so I start with a lower threshold at each session.
Which in turn, probably makes sense as I am pretty sure I now see the potential side effects as just a checklist of things I now get all the time...
So... like a pop-pickers top 10, here is a list of everything I have had over the last 5 weeks...
- Fatigue - moving about feels like wading through treacle
- Sickness
- Bone pain where it feels like bones change from being bruised to feeling crushed
- Cloudy eyesight on occasion
- Dizziness and blackout
- Shaking / trembly hands where I can physically spill drinks
- Numbness of fingers
- Toileting issues of all extremes
- Bleeding from various bits of my body
- Infected eyelash ducts from eyelashes falling out
- Nearly complete loss of my eyebrows
- Veins in arms hardening and bruising due to amount of injections
- Chills and sweats
- Disorientation and hallucinations
- Complete brain fog and forget what I am speaking about
- Lack of appetite or thirst
- Tastebuds completely gone
- Dry mouth and difficulty in swallowing
- Headaches
- Sensitivity to light and noise
- And in the last week - postules (mini boils) erupted on my face as part of chemo rash. I looked like a Shakespearean witch! And it was really painful...
However... that list looks huge, but I certainly don't think I have suffered as badly as some others have, so I am adamant I am remaining positive. The key buggeration factor in the last 5 weeks is that I have not been able to get out and about as much as I have done previously, and I really think that that also impacted on my mental health.
I have really struggled at times to put a smile on things, as I was permanently in pain, and pissed off that I was too ill to do anything. And then it becomes a viscous cycle.
I also have moments of wobble when I think ahead to all the surgery I am going out have, effectively on a voluntary basis. Whilst rationally, it's a no-brainer when it reduces my cancer risk to 2% for both breast and ovarian cancers, I am by no means a robot, and the thought of going under the knife and associated pain afterwards scares the bejesus out of me. I also don't know, what I don't know, and I am not sure what type of person I am going to turn out to be yet. Sometimes running away and having lots of holidays seems so much more fun than dealing with pain, responsibility and risks.... but I know that's me being at a low ebb... and I can still pull myself out of these pity moments relatively quickly. 😀😀😀
The counsellors are right - chemo pushes the body, mind and mental health to the limits, and I find it difficult to deal with self doubt and paranoia. But, I am getting help through that, and it's really good speaking to people who have been through the exact same thing as I am going through... because to be honest, people who have not gone through this don't really understand, and neither do they need to.
I am really conscious that I don't want to become a cancer bore, and I know this consumes my life at the moment, but there is definitely something about facing real mortality issues that really makes you look at things differently.
Thankfully I do have wonderful friends and family who keep me updated with their gossip, stories and joys which means I don't ever become too self absorbed hopefully 😀. And so many lovely people have given me so many thoughtful presents too... completely unexpected, but each one really does bring wee rays of sunshine - I probably don't express my gratitude enough, but once I am fully better I really think a big party for all of my supporters is in order!!
There was some good news over this period though, and my mum's gene testing has come back negative. So dad now going for his test to see if he is the gene carrier, or whether I am patient zero. But unlike horror films like '28 days later', if I am patient zero, I don't have anything contagious which I can pass on lol 😀😀😀.
Also, I have been able to see a few people over the last 5 weeks, which have been true god sends - they may have been constrained to an hour maximum before I had to go for a sleep, but I even managed to try my hand at painting in my brother's bathroom.... again I lasted about an hour before needing a sleep, so my mum and sister-in-law soldiered on without me as I sat and ate a pie pmsl. I make a great supervisor!!!
I will end this blog with an interesting observation... I was asked recently if I saw myself as cancer victim, sufferer or patient.... I promptly replied that I was a cancer fighter, and proud to be so... and I genuinely mean that 😀.
It's been a tough gig... but I am alive and getting through it. My last chemo is this week, and I then have a recovery period for chemo to exit my system, however long that takes. That will complete another stage in the cancer fight. ❤️
- I had the tumour removed cleanly, with no need to go back - 🕴🏻✅ success.
- I am about to complete 18 weeks of chemo - ✅ success (despite the crappy side effects lol).
- I am now in discussion stages about risks reducing surgery - ↗️ in progress.
- Completion of new body, new me - long term goal 🏆🏆🏆.
So, all's well that ends well with this monumental blog. I am grateful for what I have, the people I love and value, and my two puppies who are my constant companions.
I am a fighter. And I will win (but that possibly says more about my competitive streak and stubbornness than anything else!!)
Thanks to everyone for sticking with me... till next week's instalment... ciao for now! Xx
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