I am writing this from our Premier Inn hotel room next to Guys Hospital where I have checked in for a lovely break consisting of radiotherapy, CT scans and nice looking young doctors. Yes, a lot has happened in just 2 days and I will attempt to tell it now in between possible visits to check out the inside of the toilet bowl.
On Tuesday I saw my oncologist for the results of my MRI and to start my new drugs. He was a bit concerned with the state of my legs (ie. they don’t really work well) and luckily didn’t listen to me when I insisted it started the same day I started taking Letrozole and therefore is caused by that and asked to come off the drug. He said he had never seen such severe side effects, did a quick test of my muscle function and demanded another MRI (even though the first hadn’t shown anything), this time with contrast dye and focussing on a specific area of my spine. He really wanted me to stay on the drugs and start with the new ones right away and managed to convince me. Thank God he did. Despite the first MRI showing nothing of concern, he had a hunch and followed it and was right (I must say, Dr Kristeleit is a terrific oncologist). He ordered me an urgent test which I had the next day and phoned me 2 hours later with the result. Lots of cancer on my lower spine, compressing a major nerve which controls function in the whole lower half, bowel and bladder included. If we left it any longer, I would lose the function completely very soon. Yikes! The plan – 5 days of radiotherapy to start the next day (ie. today).
The hope with the radiotherapy is to shrink the tumours and therefore alleviate the nerve compression. If it works I may avoid a wheelchair but may not regain the function in my legs that I have lost. I can live with that.
I managed to hold it together, hung up with the oncologist and was surprisingly calm and collected. Very cool. Then I called Neil to tell him the news, opened my mouth to leave a message and out came a hysterical flood of completely incoherent babble in between sobbing. Poor Neil. Needless to say he came right home from the trade show he had been attending. Then I called my mom and did the same thing. Shows therapy is working – previously I couldn’t manage to cry at all! Now it all came out in a torrent. Sorry guys – can’t have been pleasant for you but did me good!
I went to bed last night full of fear – what if the tumours grew by just a tiny, weeny smidge overnight and compressed the nerve further and I woke up and couldn’t move my legs anymore? For the first time in forever I actually prayed. I prayed that I would not lose my legs and, more importantly, my bowel and bladder function. I didn’t pray to anybody in particular, just whoever is out there that may have been listening. Then I took an extra large dose of cannabis oil and slept like a baby all night long. I woke up this morning and phew, legs were still moving.
So today we got a train down to the hospital at London Bridge (having to take a major detour as our station is closed for 5 days due to a landslide further down the line… WTF?). Went to the lovely new cancer centre and felt like we’d arrived in Shangri La compared to the last radiotherapy centre I’d gone to in St Thomas’s hospital (the centre is now closed). This one is spacious and bright and above ground and everybody is friendly and very helpful. I had made my juice for breakfast and brought some celery with me so was all set. I had an initial consultation and scan and then we checked into the hotel and went for lunch.
Yes lunch. I can’t see how to stick to my strict regime throughout this so decided to start adding back some light food. To begin with I was very disheartened. I’ve been trying so hard but the cancer still spread. My first instinct was to just eat whatever the h*ll I want, treat myself to Pizza and hamburgers and chips. But then I thought, I have only been on this fast for 10 days and how do I know that I wouldn’t have been worse now if I hadn’t done it ? I could well be in a wheelchair already. So now it is most important to continue my regime – feeding the cancer with what it wants (ie. food to convert into sugar like sugars and dairy) could just tip it over the edge. Plus after radiotherapy detox is going to be even more important.
So today, half way through the juice fast and I ate for the first time but wanted something very healthy. All I could find that was semi-suitable was a Leon’s. I had a vegan mezze salad – kale salad, hummus, falafel, sweet potato and carrot. Seemed safe. NOT! What a dumb idea – having had only juice veg and celery for 10 days, eating food heavy in oil and fibre was not a good idea. Within an hour I had indigestion. 4 hours later, after the radiotherapy, I was sick. I am never sick! Even throughout chemo I never got sick. Bah humbug. So annoyed with myself. That teaches me to cheat on the juice fast (and yes, I realise the sickness could be due to the new drug and radiotherapy as well).
Anyway, back to the radiotherapy. It took all of 10 seconds for the actual treatment. It takes about 10 minutes to get me into position… There is a big white room with a huge machine and I have to lie down in an exact position while 3 doctors and radio therapist people shout numbers at each other. Like they are talking in code. Then they leave the room. The machine starts to whir and move around a bit. Then it scans me to make sure I’m lined up properly. Then it makes a clunking noise for 10 seconds and its done. I’m told to expect some nausea (I refused the anti-nausea medication as it can interfere with my new drugs but they did give me an alternative). I may get some soreness in the area and redness in the skin.
So that was my day. Neil had surprised me with tickets to see Dirty dancing tonight at the cinema for Valentine’s Day and I would have loved that but alas, it was not to be. I’m currently sipping on juice while he has gone out to find himself some solid food at my insistence.
It all sounds awful I know but I’m making it into a bit of an adventure. Next week I will book into a hotel for 3 nights, with a pool, and have a mini-break. Going to the hospital and back is impossible for me now on the train by myself due to lack of mobility so this way it is just a short walk or cab right and if I get exhausted by it all I can just relax in the hotel. And hopefully not make such good friends with the toilet bowl.
Oh yeah, one more amusing anecdote. On Wednesday when I had my second MRI scan it took over 90 minutes. Those of you who have had MRI scans will know how loud the machine is. And quite scary. It makes a lot of noise, different noises, some sound like sledgehammers going off and some like machine guns. Well, I was in there (head and spine) for about 5 minutes and then fell asleep. And started snoring. The noise of the machine put me to sleep! My snoring woke me up. I must be one of a very select club of extremely talented people who can fall asleep in MRI scans. I am very proud.
Yours in health and radiation,