It is done! The build-up of the last six months has culminated in an extremely civilised affair which began at 3.03pm in Bournemouth, today, and included a steaming cauldron containing my stem cells. How symbolic and alchemical is that? I mentioned this earlier to the Wrong Doctor when she described the forthcoming procedure, and her comment was that she didn’t think the stem cell co-ordinator would like to be thought of as a white witch. She was so wrong. Said co-ordinator and I had a good old chat about it and apparently one of the transfusion co-ordinators really is a white witch. Lovely. It never fails to amaze me that within the very staid and politically correct NHS, there exist such diverse and gifted souls who bring a touch of their own magic to the healing process. To be brutally honest it wasn’t actually a cauldron, more of a grey bin – and here it is. Note the pink and black duvet in the bottom left hand corner.
The nurse took the lid off and the freezing mist crept over the edges of the bin, just like out of a Disney cartoon. (Did you see ‘Brave’? Astounding. Hope my hair grows back like that.) Then, using a small tank filled with warm water, she warmed up the bags you saw in the harvest video and attached them to the IV line one by one. Seven million stem cells (some have been kept back as there were originally eleven and a half million). It was so strange to think back to when that was done, and what a huge thing it was. I do have to say – and this is with no irony or hidden agenda – that science is truly amazing. It just gets a bit up itself sometimes.
To the left of the unit in the picture is a window with strings across it for cards – so Stephen brought all mine from the office and home so I could enjoy them here. And very lovely they look too. My heartfelt thanks to you for the lovely messages of support sent via email, FB and the blog just before I came in. They have given me so much comfort during this week.
The whole thing started last Tuesday, when I was admitted. The only procedure that day was a Pentamidine Nebuliser, which I didn’t know about, as I hadn’t read the transplant leaflet I had been given. I tried to wriggle out of it of course, as the chemicals used are so noxious that the room has to be sealed for two hours after it is used. You can understand my reticence. If it is that bad why do I have to breathe it in?! I discovered it is to protect the lining of the lungs from a nasty type of pneumonia, and I have to agree it would be silly to go through all this then be seriously ill with pneumonia. I will have to have it once a month for the next six months. So I gave in gracefully. The next few days passed in a haze of chemo and the most intensive nursing I have experienced to date. My previous cycles had nothing on this. It is absolutely crucial that with this level of chemo the bodily functions are monitored constantly, especially the fluids. The kidneys are flushed via continuous saline bags through the IV (at night as well), the objective being to get rid of all the chemo before the stem cells arrive. I had to keep count of all the drinks I had, and use a bedpan so they can measure what comes out. Too much information? Sorry. I lost all my embarrassment on that score way back, when I had the boys!
One of the hardest things about all this hasn’t been the physical intrusion and drugs, it is the feeling of never having a moment’s peace. There is a really sweet chapel here, and I thought if I could only get there I could at least enjoy a few moments of quiet contemplation. I mentioned this to one of the nurses and she agreed that constant interruptions are the most frequent complaint from patients. She said I couldn’t go to the chapel as various alarms were due to go off on my drips and there were more procedures due, but that we could pick a suitable time slot and she would stick a ‘Do Not Disturb’ note on my door. Result. I had 20 precious minutes of mindfulness practice and emerged refreshed and ready to continue in a much more grounded state. Since the transplant all medical treatments have stopped, so there should be longer periods when I can use the notice. I plan on using it every day.
We also used the sign when Judy came to give me some healing, in conjunction with Imhotep. The noise of the ward continued outside, but at least the request for peace was respected. She brought with her a massive chunk of green calcite for me to hold during the process, as it is good for nausea, along with a smaller piece for the bedside cabinet. As it turns out, Fenella has become guardian of both, and she is doing a splendid job of leaning against one and keeping a beady eye on the other. The object on the left is a carved scarab beetle, a memento from Judy’s trip to Egypt. She also brought some lovely scented bath bombs. More of them later.
The dietician never materialised as apparently I have to be malnourished before she gets involved. You seriously couldn’t make this up. However, Dot has given me access to the Special Menu for patients who can’t choose from the regular one for various reasons. I chose an omelette with ham and a bit of cheese for lunch today and wondered if anything edible would materialise. Dot arrived, excitedly bearing the platter on high, and triumphantly delivered it to my office. See below – office, not omelette. I only noticed when I saw this picture that the window frame is pink. I honestly had nothing to do with that, but I do think the colour co-ordination is a good sign.
I was astounded. This was a really good omelette. It tasted like it was made in a completely different kitchen from the one where they cook the other stuff. Dot returned and was delighted to see, for the first time, an empty plate. Wow. Stephen has been doing a fabulous job of bringing me in home cooked food, so it is good to know that at least he can have a break from playing Meals on Wheels occasionally while I test the full extent of the menu. It has to be said that the Special Menu lacks any excitement or finesse, but at least it appears to be freshly cooked – a giant leap in the right direction. At this stage it is survival techniques. As soon as I get home I can get back to the diet I really need to be eating, but I do at least have the fridge stuffed with smoothies.
The weirdest day of all was yesterday (Monday – Day One). Four of the previous five days were pretty gruelling chemo. The days are counted backwards to the big Zero, the day the stem cells are returned, after which you go into positive numbers. Day Seven was the nebuliser, Day Six was a quickie half an hour chemo session, Days Five to Two were a lot tougher, with two half hour doses of my old friend Cytarabine (10 in the morning and 10 at night), which previously brought up the rash and made me very sick, and four hours of Etoposide during the day. At the beginning of the week the days seemed to stretch ahead interminably, and I wondered how I would get through them. I was especially worried about the sickness, but the staff managed it fantastically and I was fine. Day One was apparently the ‘bomb’ in comparison to the other chemo, and it was non-stop action from the moment I woke up, but none of it was unpleasant. You probably won’t believe this but the worst bit was the ice lollies. This particular drug, Melphalan, destroys the digestive gut from the mouth right to the exit point, and as coldness helps to protect the cells in the mouth, I was given ice lollies to suck and crunch, from 20 minutes before the chemo, all the time it was running, then 20 minutes afterwards. Yuk. I hate ice lollies. I crunched my way through two orange Callipos, two mini-milks, a Rocket and a Fruit Pastille lolly, all before noon. I felt so sick, and it has taken until now for my teeth to recover from the onslaught of the noxious chemicals that make up these things.
It is hard to believe I have been here a week, bearing in mind my escape tactics of previous treatments. I have had some amazing conversations with the nurses, and I am sure there will be more, as I am only about a third of the way through my stay here – the rest of the time being recovery. My impression is that people in caring professions never think they are doing a good enough job. A lot of them seem to be Virgos, no coincidences there. Several of the nurses told me they wish they had more time to sit and talk with patients, and although that would be good in an ideal world, I’m not so sure that is where the magic is necessarily transferred from nurse to patient. It is in the daily encounters, the smiling collection of yet another bedpan, the few moments of contact during routine procedures, that as patients we get the sense that someone is doing this job because they really, really want to, and that feels amazing.
Day Zero has been really nice. With half an hour to spare before the ward rounds this morning, I ran a hot bath. I chose the rose bomb, and was delighted as the water became beautifully oily, scented – and with floating rose petals! As I sank into the water, still attached to the drip, I realised just how bizarre the whole situation was – but it was only later I appreciated that I was unwittingly undertaking a ritual cleansing in preparation for the transplant.
And now, at the end of the day, I am still feeling good. It wasn’t as traumatic as I was warned it could be, but I know the days ahead will be tough, as my red cells, white cells, neutrophils and platelets drop. I should start to surface about a week to ten days from now, as my body starts to rebuild itself, so don’t worry if there is radio silence for a while. Obviously that is a worst case scenario and I am planning on being back in action much faster than that! There will be much news on my return.
Wishing you well