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!
I hope you have had a good weekend! I definitely have- I’ve seen some great people and been given EVEN MORE lovely presents! At this rate I will have nothing to ask for at Christmas because people have been so generous!
Speaking of gifts, earlier this week Ed presented me with these (which he no longer needs as he is not on a neutropenic diet) …
He got them as his mum works for a school and they order them for the canteen there anyway, I think us “neutros” are not supposed to use ketchup bottles because it lets bacteria get in and possibly bacteria grow on it when the top gets all manky!
Like Ed, I have become one of those patients whose levels are consistently low- so much so that it interrupts treatment such as LPs. After dropping to 11 I had a transfusion which took the level up to 30, however I then dipped back down to 13. These are not at all good levels for the LP (they want my platelets at 80) so I am having two bags of platelets today and one is on reserve in case they drop again in the next 24 hours.
My next LP is scheduled for 11.30am tomorrow. I will let you know whether everything goes to plan or not!
Earlier I had a lovely chat with Yvonne, the specialist nurse for the TYA unit and C6 the adult unit (and accidentally ended up spilling my life to the poor woman!) First she got me very scared- asking about Daniel having a blood test to see if he is a match for me if I ever need a bone marrow transplant (BTW DAD/DAN IF YOU SEE THIS DON’T FREAK OUT, ITS NOT LIKELY TO HAPPEN AND I WOULDN’T FORCE YOU IF IT DID COME ABOUT!) and then she got me very excited by saying that her and another nurse are going to ring chichester paediatrics to see what parts of my next block “Escalating Capizzi” can be done at St Richards, so that I could be LIVING AT HOME! Somehow I think the doctors are going to be reluctant to allow it but that would be reaaallly good if they did! I do find the idea daunting though- I’m so used to being here and I can’t imagine what it will be like being home again for an extended period of time but on chemo too. It’ll be another big life change to adjust to, but I’m sure it will work out fine!
New form of entertainment: watching the men on the roof opposite. Who are they? What are they doing? It’s all very thrilling, really.
I am very happy to tell you that I have felt very good for the last two days! I’ve been more awake and despite being taken off the 24 hour anti-sickness pump I feel fine! The most unpleasant thing at the moment is peripheral blood tests and taking pills.
Today I found out exactly what has gone wrong to prevent the lumbar puncture. After the doctors tested all the clotting factors it became apparent that there was nothing wrong with them. This stumped them a bit and apparently Charles even said something along the lines of “I don’t understand, I’ve never seen this before”. So next thing you know they are on the phone to a SPECIALIST in LONDON! I am that difficult that they need a specialist! (we always knew I was special… just not in the way we expected… I jest).
Anyway… According to Heather my doc explained what was happening and that they had no results to show what was causing it and he said straight off “has she taken peg asparaginase?” (referring to one of the chemotherapy drugs that yes, I have taken), and he used his specialist knowledge to explain that asparaginase leaves an enzyme in your body that attacks the cancerous cells for a few weeks. That’s the normal bit.
Now to the part where I become even more weird and wonderful.
I happen to be the 1 in 100,000 people who reacts to the enzyme, and the form of the reaction is that it messes up my clotting. And voila! Now we know the root of the problem!
My levels are “on the fence” now, I am on the borderline between ok and abnormal, so the doctors were deciding then whether or not to go ahead with the LP or whether it was too much of a risk. The consequences could be a bleed into my spinal chord and that is not something we want- loss of sensation and use of my legs would not be appreciated.
Have now been told by doctor Tom that it should be fine to go ahead with the Lumbar Puncture on Monday (AT LAST!)
The LP is not really imperative chemo, it’s used as a preventative method- putting in a drug that inhibits the growth of any funky cells in my spinal fluid which is why it is OK to move the dates around or miss a few if it can’t be helped.
Had a lovely visit from some close family friends, some not so lovely guitar playing from Ed (using his ukulele chords on my guitar and attempting some dodgy power chords) and later I am seeing some good friends from church so today has been a very interesting and rather good day!
My clotting wasn’t right again today so the lumbar puncture had to be cancelled again. However, my levels are slowly improving so we are hoping we can go ahead on Monday.
I have had some good news today as they have changed the treatment after the results of the 2011 trial, meaning that now there is less blocks of chemo that we have to go through. Ed was over the moon as he thought he was coming in for a long stay today but instead they have put him on maintenance and sent him on his merry way to live almost normally again!
I’m doing a lot of lying around in bed feeling sorry for myself at the moment, hoping this is just a phase and it will pass as feeling helpless and demotivated is not fun. Earlier we got a bit creative with the bedpans as I am not allowed to have a full on bath, mum tried something that she does with her patients back home… filling them with warm water and shower gel to give me a relaxing foot bath! Admittedly she does it for her patients in a wash basin but we had limited resources!
(pause writing for heart scan)
Well that was interesting, had to stop blogging so they could scan to check my heart function. This involved me stripping but staying covered under a sheet and a quite young male nurse/doctor shoving a probe around my chest. Am now covered in pesky ultrasound gel but at least I know my heart is healthy! I’ve been snoozing ever since he left (why waste the opportunity as I was already tucked up in bed!) but one of the nurses is going to get me playing a board game down the other end soon to make sure I’m moving around.
I am feeling good day today, I didn’t feel tired like before and have had some lovely visitors to make my day!
I had to have the usual daily tablets and anti-fungal drip but otherwise everything has been normal.
Tomorrow I need to have a couple of units of blood products to strengthen me up for some procedures on Monday and Tuesday which I thought you guys should know about. On Monday I will be having another lumbar puncture where they put some chemotherapy into the spinal fluid to make sure there is no leukaemic cells there. The first experience of this awake didn’t go well. Every little thing went wrong and it ended up rushed and difficult to find the right spot and I really didn’t enjoy it so prayers/thoughts appreciated! She is going to try a different position and give me something to make me a bit spaced just to make it easier but I am still a bit apprehensive!
Tuesday is booked for a bone marrow test which is supposed to be the worst of the two but I coped fine the first time- hoping this will all go smoothly again!
These tests will hopefully show a ‘marker’ in my cells which they can examine to judge how my cancer has responded. They decide what the next stage of chemo is so it is quite important! The one problem is that the test can be indeterminate which means they can’t give you a conclusive answer of how you have responded and whether you are in the high-risk or low-risk group. FINGERS CROSSED FOR LOW RISK! At the moment this seems likely judging by the results of the two I have already had and how generally well I am. I’ll be able to tell you in a couple of days to a week after what the results of these are so stay tuned!
So someone asked about how many people look at my blog and how well it is doing and trying to stay as modest as possible I feel like it is doing really well! The response I have had from people has been really encouraging! I have had a mix of random followers, family, people who know me keeping in the loop and it is even starting to spread out and get to people who don’t directly know me but want to follow it which is amazing! This is just what I wanted and my daily stats are at a good level! I’m not aiming to be famous or anything but in the future when I can get out more and get involved in fundraising events and things it would be cool to branch out even further, I just need to exert some more effort and get it out there!
Now I am going to eat some heavenly chocolate brownies from Kim and open a lovely looking gift from Jemma! Hope you are all well, thanks for reading.