Update time, 24th April I’m finally getting an update done.
My chemo got brought forward a week from 10th April to 3rd April. I had to wait for a call on the morning on the 3rd to inform if I had a bed or not. Unfortunately there was no bed that day, I was on hold incase they got a discharge and said I could be called in at any time from then until 6pm. This happened again on Tuesday and Wednesday until I got a call at around 3pm on the Wednesday calling me in that evening. The waiting and being on tenter hooks for those few days was pretty agonising, but unfortunately part and parcel of how things are in the NHS – things are really overstretched.
Wednesday evening I went in and was put on a chemo ward but without any treatment starting until the Thursday, 3 other beds on that ward. I was the youngest by far, the guys were in their 70’s and 80’s. I got speaking to a guy called Ray, who seemed like an absolute trooper, 80 odd and just ploughing through with his treatment, really super positive which was really encouraging. The other guys were less positive, they were in a real bad way with their health which was really sad to see.
The Wednesday evening on the ward was pretty horrendous if I’m honest. I had hoped to get a decent nights sleep as I wasn’t having any treatment start until the following day but the bleeping of the chemo machines going off and some of the guys nausea and other trouble etc (I will spare these details, but it was really bad) meant sleep was pretty difficult. Thankfully I had been given a heads up about nightimes and I had taken some earplugs with me, which helped. I had a doctor come and check up my surgery scar at around midnight (some concerns about a hard area underneath) and suggested there needs to be an ultrasound to check this out.
I got moved wards on the morning to the young persons unit, because I was by far the youngest they needed the bed on the ward for someone older than me. The young persons unit was for people aged 18-25 so I was only just out of the age bracket. The guys on this ward were a lot younger than me, I would say around 18-20, again there were 3 other beds in here as well as my own. It’s always tough to see people unwell, but I think it was more difficult seeing these young guys really struggling as they were so much younger than me. But I can’t get bogged down in this, positivity is the name of the game after all.
The Young persons unit setup is pretty odd if I’m blunt, the ward is funded by the teenage cancer trust and as a result they have stipulated rules, the main one being that if someone over the age of 25 is in the ward they aren’t able to use any of the facilities. I’d already been shown around the facilities (lounge areas, cinema rooms, kitchen area etc) and previously told that if I was put on this ward I could use the facilities, but this wasn’t the case. I was reminded a number of times and even handed a laminated rule list that basically told me that for the duration of the time I was on the ward I could stay in my bay or go to the toilet and that I wasn’t allowed to go anywhere else. I queried where I would be able to walk (DVT I know is a pretty big issue when you are in bed for lengthy periods of time) and I actually would have to walk back to the old ward I was previously on to walk up and down that corridor instead. This was a fair few metres away, and the drip machines battery life was about 10 minutes tops (these things are ancient!) so it did seem like weird rules. It wasn’t an issue for me because thankfully I knew I would have family visiting for lengthy time periods but it really made me think that if it had been someone else in that position, who didn’t have visitors they would feel somewhat cut off from everything. Everyone on the ward has some form of cancer after all, the psychological side of things is tough for everyone. I tried to embrace this pretty mad scenario but it was very strange these rules existed!
Anyway, back on topic. There was some confusion about the ultrasound and it ended up I had to chase this to get it done (nothing was on the notes about it being raised that I needed this pre chemo starting), I got slotted into a space that morning for the ultrasound and was rushed down. The timing was difficult as I had just had my fluids etc before my chemo could start so there was a small window to get it fitted in as I’d been advised the cannula shouldn’t be ‘capped off’ for any length of time before the chemo to ensure it didn’t cause issues. Ugh time pressure not great, I’m pretty neurotic about all of this kind of stuff. Everything was quite a rush and I got handed my drip tube thing and bag to hold that’s connected to me – yuck, never again. Holding all that stuff is really weird.
I got taken into the room for the ultrasound and some sort of alarm went off and everyone rushed away for some sort of emergency and I was told that actually I could be waiting around some time, a lot longer than the 10-15minutes I’d been told was the max length of time I should have this cannula thing capped off. I completely understood the situation – the persons emergency everyone was attending was absolutely the priority and it must be done, but it really does show how horrendously stretched things are in the NHS at times. No fault of the people there at all, but it made for an anxious 30 minutes of waiting so while I waited and staff checked if I was ok to remain down a lot longer than anticipated.
Anyway after everything was resolved, the ultrasound on the scar came up fine which was a relief and I was returned to the ward shortly afterwards.
My treatment then started early on the Thursday afternoon in the young person unit and would run until Sunday morning.
The chemo itself I found incredibly daunting, I’m already chronically phobic of needles, blood, and cannulas so I’m already not the best so this was certainly a test. It took some time to get my head around the chemo bags – marked up as cytotoxic in pink/red bags and with numerous warnings on them and all nurses who handled the bags gloved up – yet this stuff is going directly into me, litres and litres of the stuff! But it’s a means to an end, I know this is necessary and the sooner I got my head around this the better. Easier said than done of course.
The chemo bags take various lengths of time to go into the system, some bags are 2/6/8 and I think some were 12 hour bags – I kind of lost track. Apart from being on edge all the time the actual process of it going into your body is straightforward and relatively pain free. The nurses monitor your intake and output of fluids, you go to the loo a lot!
Not sure what else to say on the chemo side of things, it went well on a whole but at the same time I felt my body change. In the space of a couple of days I went from feeling fit and healthy to feeling generally pretty frail. Side effects at this time were minimal, fatigue, weird mouth taste and a general ‘hangover’ feeling were the only ones present. Going to the loo was huge effort and I felt ‘clumsy’ on my feet. Emotionally and physically I felt very strange. It was really amazing to get lots of messages during this time, people just asking how you were was really lovely especially at a time where I didn’t feel myself at all.
Sunday morning I was outta there!