I genuinely can’t believe I am still going with this journey. As in, how can you be this poorly for this long and it not be done with? HOW am I still having treatment? But then I guess I could also be asking how am I still alive? My blog has been quiet because I have become so lazy these past few months, I don’t have the motivation to get anything done, and when things need doing I usually just ignore them and have a nap instead. Perhaps I can try and work on this since it’s the start of a new year… then again I will probably just say the same next year.
SO another new year seen in with cancer. I spent it in the same way as I saw in 2018, in my pyjamas at home but I stayed awake past 8pm this year! I had originally planned (and fully paid for) a trip to Paris with my friends for NYE but my latest chemo cycle was delayed and by the time New Year came around, I just didn’t feel well enough to go with them. Gutting, but I never could have walked 10,000 steps a day to sight-see or get through the trip without catching an infection thanks to my weakened immune system. I still had a lovely Christmas and new year with my family so I don’t feel like I’ve missed out on much, I did have to log myself out of social media a few times because it’s soooo hard not to compare your life to everyone else’s. The chances are if I’m scrolling Instagram, it’s because I’m tucked up in bed poorly, so of course I’m going to feel fed up seeing everybody else out having fun. I’m currently neutropenic anyway, so I’m housebound for the next week, which usually I’m fine with and very rarely get bored.
I’ve had a busy few months. So since my relapse diagnosis I have finished three out of six cycles of my new chemotherapy treatment, had update scans and also got a puppy! My new chemo is on a 3 week cycle. For the first week, I go to Leicester every day for five days of Vincristine and Irinotecan IV chemo. The second week, I go to Leicester on the Monday for vincristine and then have the third week off as recovery. I have to wait for my neutrophils (white blood cells/immune system) to be at a level of 1. My blood levels are taking longer to recover now after chemo, so I can only assume this is because my bone marrow and my body in general is just getting tired from all the treatment. I don’t blame it! I had an MRI scan after my second cycle, and it showed that my spine is still clear of cancer, and the tumour in my leg is contained. It hasn’t grown or spread, but there was swelling on the scan, not really sure what that means but I can feel it in my leg! My last cycle was delayed because of my neutrophils, so I had to have my last day of chemo on Christmas Eve which was a shame – but at least I finished in time for Christmas Day! The side effects haven’t been too gruelling this time around, I’ve been a little bit sick and just felt very exhausted, but so far only been admitted to stay in hospital once! To me, this is great compared to my experience with chemotherapy last year!!! I have had to shave my head (again) as it started falling out after my second lot of chemo. I have filmed this process so if I’m brave enough and clever enough (unlikely I can work it out) I might share it on YouTube.
Since my relapse, I have been seeing various different specialists in the UK to be monitored and also discuss further treatment options. I went to Birmingham to see a Sarcoma surgeon, and he was the loveliest man I’ve met so far! He was very honest, detailed and answered all my ridiculous questions. When I arrived he sent me straight for an X-Ray to check the progress of the bone in my thigh (where the tumour is). Originally, he wanted to see me to discuss surgery which involved completely removing my femur and replacing it with metal. This would involve a major surgery and a very intense recovery, he was even adamant I wouldn’t ever walk again without the aid of crutches. He explained that this is because the new ‘bone’ wouldn’t be attached to the surrounding muscles and tissue, up to my hip, so really the leg just wouldn’t work properly at all. Luckily for me, at this stage, he has decided that as the chemo has controlled the pain, and there is not a huge amount of damage to the bone, that he won’t be needing to go forward with this surgery! It would only need to be done if I was in pain or struggling to walk. He has however banned me from going outside when it’s icy, or doing anything which could involve breaking my leg… as the cancer has put me at massive risk of easy fractures and breakages due to the weakened bone. Luckily I spend most of my life sat down anyway.
So surgery is over and done with for now. I travelled to Nottingham a few days later to meet with a new Sarcoma specialist (I don’t have one at Leicester anymore) so this was exciting. She was also really lovely and knew a lot about my situation so clearly had my best interests at heart with her decisions. She has decided that at the end of my six cycles of chemotherapy, she will do a PET scan (full body) to ensure that the cancer has not spread or started anywhere else in the body, and will then start me on six weeks of radical radiotherapy. I’m not entirely sure what the difference between radio and radical radio is, although I know it involves giving the maximum dose she can. As far as I know, radiotherapy involves a big machine, and laser beams which zap the one targeted area in the hope to fully remove the tumour. She told me it would be a ‘walk in the park’ compared to the experience I have had with chemotherapy, so that’s good enough for me. It will be every day for six weeks, and the process takes about five minutes per day, so shouldn’t be too invasive, although I will be receiving this treatment in Nottingham (1hr30 from home) so we will probably have to rent somewhere or stay in hotels for this time. Once I’ve started my radiotherapy in a couple of months, I will do a separate post all about it!
Everything has been made more bareable recently since our new addition to the family… little Dolly the maltipoo puppy. Dolly was part of my ‘wish’ that was granted by a charity called Edgar’s Gift who give cancer patients a wish of their choice. So I found Dolly in Doncaster and they helped by putting some money towards her! I hope everyone has had a lovely Christmas and new year, my family and I are so grateful still for all of the support we receive from friends and even people we don’t know! Let’s hope this year brings us much more health.
X x Daisy