Just as I begin to understand my schedule for treatment, it changes. Always. After two cycles of a chemo trial, my scans showed no change, but significant swelling to the area of the tumour. My consultant decided to continue with the treatment, as two cycles is quite early to be able to judge whether or not the chemotherapy is working, and ‘no change’ is technically a good thing as it means it hasn’t grown. After another two cycles, my leg was re-scanned and it wasn’t good news.
I arrived at Leicester Royal Infirmary on Monday 4th February to begin my fifth cycle of Irinotecan and Vincristine, and I wasn’t feeling well at all. As a three week cycle, I would usually have week one for chemo, week two for chemo, and week three as a ‘good week’ where I would see friends etc, and generally feel much better. But at this point, I was no longer having a ‘good’ week, I was just feeling crap. All the time. When I arrived to my clinic appointment that morning, I said to my consultant (for the first time since starting treatment 18 months ago) that I didn’t want to have my chemo. I needed a break, I was listening to my body, and I just knew that I could not go ahead with anymore of that chemotherapy. I had said to my mum beforehand, that I wasn’t prepared to go through another cycle of this chemo until I knew it was definitely working, because it was making me too poorly. It was nowhere near as brutal as the drugs I had in the beginning of my journey, but that is what was so worrying. I shouldn’t have felt too poorly this time around, but my body is tired, my bone marrow has had enough, and to be honest it was struggling to recover the way it used to, so for once I spoke up about it.
I definitely know and understand my body now more than ever, because I was right. My body wasn’t ready for chemo. My scan results had shown that the tumour in my leg had grown by 0.5cm. This isn’t much bigger, it’s 13x6cm, but it appeared more aggressive on the scan than before. So in the words of my consultant ‘your body has stopped responding to chemotherapy.’ These are the words you dread hearing from the beginning, and here I am being withdrawn from treatment and hope all at once. I have always been told how lucky I have been to have had such a good response to chemotherapy, because that’s something that cannot be controlled. Your body either responds, or it doesn’t. Usually, if it doesn’t respond, then they can try other drugs and look at different protocols. But unfortunately, Sarcoma is rare, Alveolar Rhabdomyosarcoma is even rarer, stage 4 is complicated and a relapsed stage 4 metasasised Alveolar Rhabdomyosarcoma with an unknown primary, is proving almost impossible to stabilise, because believe it or not there is currently no more research which helps my case at all. They have tried the most recent drugs and there is currently no obvious alternative chemotherapy available. I bravely asked my consultant if this makes my cancer terminal. She didn’t give me a straight answer, which is worrying. I know my cancer is incurable, but it’s always been treatable. So where does this leave me? Am I going to spend the rest of my life fighting this thing off? Or is my life almost over?
I was booked in for an urgent full body PET scan, to check up on the rest of my body, because if I haven’t been responding to chemotherapy, we need to check that the rest of my body hasn’t started growing and spreading cancer cells again, because it has a tendency to do this. At this point I was referred over to a Sarcoma specialist in Nottingham. She was keen to give me radiotherapy, but wanted me to have the chemotherapy first to try and shrink the tumour before zapping it with radio. But now that the chemo hasn’t worked, she wanted me to move straight on to radiotherapy. THANK GOODNESS she has given me this option. Because at this point, I had started to consider planning my own funeral.
I went to Glenfield hospital in Leicester for a full body scan on the Thursday of that week, and had an appointment with the Nottingham consultant on the Friday, so things were moving very quickly. I was told that if the cancer was just contained to my leg, I would be able to go ahead with five weeks of radical radiotherapy (the strongest dose). However, if the cancer has appeared anywhere else, it will be more complicated, I will have the same dose but over a shorter period of time (probably two weeks) and then potentially have radiotherapy on any other areas of cancer. My consultant in Leicester had told me that anyone else with my original diagnosis would not have made it this far, and whilst that should empower me, it makes me feel guilty, like I’m on borrowed time which will soon be running out. My leg was in a lot of agony at this stage, I was just about managing in the day time, but wasn’t getting any sleep at all at night. I’d have a hot water bottle on my shin and a bag of frozen waffles on my thigh, tossing and turning all night in pain. I’d been taking morphine every night for weeks already to relax me before going to bed, hopeful of some kind of shut eye!
During my appointment in Nottingham, I went through the planning stage of radiotherapy, to be ready in case I was eligible for the treatment. This involved having a CT scan, and moulds of my legs taken. These have to be used every time I have my radio, to ensure I am laid in exactly the same position every time, and that the beams are targeting the exact right area. This is all planned right to the very millimetre. I was given four little tattoos on my hips, right knee and thigh which are to be lined up with the beams every time I receive the radiotherapy, to ensure further accuracy. For the leg ‘moulds’ I was laid on a solid bed, and little squishy bags were pressed around my feet and my leg, and set in to place, where I can comfortably lay my feet during each session.
I received the PET results the next Monday morning, a week after receiving my awful scan results of a grown tumour. Luckily, the cancer is contained currently to just my right leg!!! My spine is still completely clear (much to everyones surprise) and I am able to receive radiotherapy on my tumour. This is the best news we could have hoped for. Fast forward just two weeks, and I am already in Nottingham at the start of my radiotherapy journey. I have been scheduled five and a half weeks / 28 sessions of radio all at Nottingham City Hospital. So unfortunately we have had to spend lots of money/time planning our last minute stays and hopping from hotels to apartments, back to home (to see Dolly, of course!!). It was just too far to travel up every day. So my radical radiotherapy began on Monday, February 18th and I will have it Monday-Friday for five and a half weeks, scheduled to finish on March 27th. But no doubt something will change, as it usually does. I have started filming the journey of radiotherapy and will create a VLOG for my YouTube channel to show everyone what happens. Each session takes about five minutes and you can’t feel anything at all! You literally lay on a flat board and a big machine moves around above you, presumably zapping the tumour with its radiation, but I’m not all that sure. I’ve left the radiographer with lots of questions which we will hopefully answer in the next vlog over on my YouTube channel (Daisy Ellis).
Thank you so much to everyone who is continuing to support me on this never ending journey! I’m feeling closer to the finish line than ever, and hoping this next course of treatment isn’t too tough to get through. Then I am hoping my life can be a little more ‘normal’ whatever that is…