I’m still here, despite the blog going quiet!! I have just been so busy with life and my new treatment and wanted to wait until I had enough news to share to do an update on here. I also try to avoid using my blog as a way to rant – so I definitely have to be in the right frame of mind to sit and write a post, else it very quickly becomes a negative place to be.I’ve also been hesitant to post anything because my self-esteem is currently minus zero and I’m feeling quite lost. I’ve had to make the decision not to return to Uni in September because I’m just not well enough – this isn’t me giving up, but I’ve been advised to prioritise my health and not plan too far ahead. So at the moment I’ve had to put that on hold.
So I finished my main chemo in February, and had positive scan results in March. I then ended up having an unplanned break for nine weeks whilst we waited to meet the spine surgeon. I have been advised not to have any surgery on my spine at the moment, as it requires another break from treatment and is usually a four-month recovery. This isn’t too much of a problem as I’m not in any pain at the moment with my back, or having any obvious problems – it still feels quite weak and I’m really cautious with it, other than that there is no urgency to operate. Plus, I’m not really in any position to be taking another break from treatment for now! There is still much confusion about the cancer itself, and the spine surgeon threw a whole new bag of worries into the mix, when he refused to operate on a patient who only has six months left to live… EH??!! I’ve always known my prognosis is pretty shite but never have I been given a time frame of when I’m going to die. This obviously left us with so many questions for my oncologist.
My new chemo routine is oral Cyclophosphamide chemo every day at home, and then an IV Vinorelbine chemo every Monday for three weeks on one week off, then repeat. I didn’t even manage to complete my first cycle! It’s been a very complicated couple of months on this protocol, as it’s a medical trial and I have switched over consultants after mine had gone on to maternity leave. Every week before chemo you have to have a blood test, to check that certain levels are good enough to tolerate chemo. Basically, your healthy cells come back up first and the cancer cells slowly lag behind, so they have to catch your body at the right time to give you chemo, to kill off the cells without making you too poorly. Now that we have our new consultant, she has switched things up slightly and adjusted the doses to prevent me from becoming too poorly, so that I am able to tolerate more chemo. It has so far made me feel quite poorly on the day of having the IV so I tend to just go home and crash until the Tuesday. It’s given me a really sore mouth every week and I’ve been very tired and achy, but luckily no sickness!!
As if my life isn’t dramatic enough, I’m sent for an ‘URGENT’ appointment at Eye Casualty in Northampton General. I received my two yearly letter in the post reminding me to have another routine eye test, which usually I ignore. But funnily enough I actually wanted new glasses as I was bored of the frames I have at the moment. My prescription is pretty tiny; I couldn’t tell you what my sight problems are – it’s either short or long sighted but I can’t even remember which? So I went for my appointment (which was free, cancer perks) and then ended up paying nearly £200 for two new pairs of glasses, as my prescription had slightly changed!! The only concern was that something at the back of my eyes wasn’t as it should be – the optician couldn’t be exact on what was wrong, but wanted a specialist to check for any possible problems, as my optic nerves didn’t look normal. I have never known anything about eyes, I don’t remember having them looked at more than a few times in my life and can’t remember anything I learnt about them in school (or taking an interest). So I didn’t even know what the optician meant, but also didn’t want to ask too much, therefore I have googled this so you don’t have to!
“Optic nerve: The optic nerve connects the eye to the brain. The optic nerve carries the impulses formed by the retina, the nerve layer that lines the back of the eye and senses light and creates impulses. These impulses are dispatched through the optic nerve to the brain, which interprets them as images.”
To be honest it was all very dramatic, I so much as ‘popped in’ for my eye test on the way for a night away with my friends, so never expected to then be delivering a letter to my GP for an urgent referral. After much confusion about what I was supposed to do, my GP rang me to say I should have gone straight there, instead of waiting for an appointment later on in the week. Little did I know, as I was driving up the M1 to meet my friends! I went to Northampton General and had my eyes looked at – another *cancer perk* I didn’t have to wait for 3 hours like everyone else, I was seen within 30 minutes! I really do have an eye phobia; I can’t bear to have my eyes touched or look too closely at anybody else’s, I don’t know HOW people wear contact lenses, they are the real heroes. I had lots of tests on my eyes, including having a teeny little needle poking my eyeballs !!!!!!!!!! This is the first time since August I have actually winced and tried to run away from the nurse. So far I have handled everything absolutely fine, needles, scans, NG Tubes, but poking my EYES is just TOO FAR surely?! Anyway, long story short the doctor at the hospital sent me for an urgent MRI which I had the next day on my brain. The results all came back normal and he was no longer concerned – although we haven’t actually received the radiographer report, his secretary just rang me to say everything’s ok. So now I just need to wear my glasses most of the time to stop the hallucinations and flashing I had been having the week before – probably due to chemo.
I have also just had my latest MRI scan on my spine to check up on the cancer. My consultant was really pleased, she was sure there was nothing new to be seen on the scans which is reassuring, and she even thinks that most places are clear now, other than my spine! There will always be lots of damage to my spine, including 3 vertebrae collapses but hopefully this won’t cause too many problems long term. I have even lost about 2.5 inches in height now. So now it’s continuing on my maintenance chemo for 12 months and hoping they continue to keep the cancer stable.
I have just got home from 2 nights in hospital – something I haven’t done for months! On Wednesday 11th July I started to get really bad pains in my tummy, I couldn’t stand up straight and moving about was absolute agony. I’ve got a Gastrostomy PEG in my stomach at the moment, which is basically a tube going into my tummy which I was having feeds through – this was inserted in November last year when I was too poorly to eat and lost nearly 10kg in weight! I would connect it up to a machine overnight and a bag of nutrition would just slowly go through. It sounds really gross, but actually it’s always been fine and has been an absolute life saver (literally) so I’ve never minded having it and have always been grateful it was ever an option, especially when eating anything or swallowing tablets made me so sick! I think my next blog post will be about my experience with appetite and the PEG as a few people have asked if it was a good choice during treatment and I honestly cannot recommend it enough (for those who need it obvs)! Anyway, it was internal agony around the area of my tube so I had to get it seen to. My GP surgery were amazing this day, they close at lunchtime and were shut all afternoon, but the nurse still called me in to have a look at my tummy. She gave it a clean, but there wasn’t much to see so she put a small dressing on it and gave me a course of antibiotics.
I went home to bed and still couldn’t move – if anything the pain was getting worse and worse. We rang Ward 27 at Leicester and asked their advice, my temperature was slightly up but nothing too dangerous so we said we’d keep an eye on me and then see. My temp was then creeping up slowly and I couldn’t sleep with the pain, so we decided to go up when it got to about midnight! I got to the assessment unit and they did all my observations (blood pressure, temperature, stats etc) and made me a bed up in a side room. I slept on and off whilst I waited to be seen by a doctor, who didn’t come round until about 7am! This was a good thing though, as it meant for once I wasn’t a priority – meaning I wasn’t dangerously poorly, something we aren’t used to! She prodded and poked my tummy and took a swab, and decided to prescribe IV antibiotics and I was moved across to Ward 27 by about 8am.
My consultant was actually on the ward at the time which was so lucky. She made some phone calls and spoke to the surgeon who was on call for that day. Amazingly it was the same surgeon who had inserted my PEG in the first place, and he did a really good job. Apparently he remembered me from November and said he would be more than happy to remove the tube that afternoon!!! Having this removed was always part of the plan, as I haven’t really used it in about six weeksnow, so it needed to come out, we just didn’t know when they would schedule it in. So I was nil by mouth all day (no food or drink) which by the way was torture, when the girl in the bed opposite was watching Come Dine With Me for the majority of the day, and went down for surgery at 1pm, it was all going so smoothly I couldn’t believe it. Of course I was still in agony at this point so I couldn’t wait for my general anaesthetic to knock me out!! I still love that feeling when they inject the anaesthetic and you go all dizzy and fall off to sleep… weird. I was knocked out at 1.15pm and I was back round again by 2pm so it was a really quick surgery.
I had absolutely NO pain at all when I woke up, it was literally a miracle. I had a really sore throat from where they had put the camera down my throat, and also a sore lip where they had cut it from putting the breathing tube in my mouth, but besides from that I was so chuffed the pain had gone – and the tube was out! It has served me well and I’m sure if I am ever in the position to need one again, I will be back under anaesthetic, but for now my appetite is good enough for me to start gaining weight again on my own. There’s a tiny dressing to cover what currently looks like a bullet wound (soz) and it should heal within the next week or so. I was kept in for the night again to make sure the wound didn’t leak etc and it was fine overnight, so by the next afternoon they let me go home – which I was desperate to do!
X x daisy