After a last minute change of plan which meant that I had to pack a bag for a 1 night stay up at Southampton, my chemo finally started on Wednesday. The day turned into a bit of a nightmare (it was a lumbar puncture day and you know I never have any luck with them!) but I was able to leave Southampton this afternoon as planned. Here’s the story of Wednesday…
11:30 am: The first thing that went wrong was that my bloods were taken too close to the time of my lumbar puncture. Without knowing my platelets they couldn’t go ahead due to the possible risks, so our first setback was that we would have to wait for the results to come back from the lab.
2:30 pm: THREE HOURS LATER, in which time we had been stuck waiting in the cramped intrathecal room on a busy and disorganised ward, the results finally showed my platelets to be at an acceptable level. Brilliant! So we can get started now right?
2.40 pm: Cue the next disaster: pharmacy were going to take another half an hour to make up my chemo, which to this very moment makes no sense to me since the intrathecal was booked for 11.30am! WHY WASN’T THE CHEMO MIXED FOR THAT TIME?!
3:15 pm: We get wind of a universal gas and air shortage. Only one of the five cancer care wards had a canister, but they needed it for patients who were having bone marrow biopsies. When the nurse asked me if I didn’t mind going without (casually, as if this was no big deal) I tentatively nodded my head and in what I’m sure was a hushed voice several octaves higher than my normal tone, replied “mmmm…. thats….. o..kay”. Ever since that first lumbar puncture which went oh so wrong I have always had the gas and air to take the edge off, so I couldn’t imagine the procedure without it. I was anticipating severe pain which of course didn’t happen, but you do notice a few more unpleasant twinges and sharp pains without it.
One of the main lessons you learn through this and any experience of hospital I’m sure is “take whatever pain relief they offer you”!
3:50 pm: The lumbar puncture is finally done, and so begins the hour of lying flat on your back afterwards to prevent headaches and sickness. Like I said it wasn’t as bad as I had expected but I did spend most of the time trying not to cry, not from pain but because of the way that everything had built up, also from being aware of everything during the procedure and the fear from right before that I had kept in! I knew it was irrational so I was lying there giving myself a silent pep talk and willing myself not to blubber like a baby!
Was that it? Could I relax now? No, of course not! The moment I could stand up again I was straight off to have my monthly nebuliser, that ghastly drug that I have to sit in a ventilated room and breathe in. I think by that point in the day I was so indifferent to everything that I couldn’t be bothered to get worked up by it. I put my headphones in and powered through the vile taste so even that wasn’t too bad in the end!
The day ended very well with the girls having a good old natter: Asheton, Kitty and I plus our mums all sharing news and having a moan about a few things! I also got to catch up with another friend who we hadn’t seen for a few months which was also good, she amazed me with her strength and bravery as she was facing a major operation today.
I had one dose of IV chemo today, my last ever shot of a drug called Cyclophosphamide so I have been feeling slightly groggy since then, but am glad to be home!