Well, what can I say? It appears I have been tricked, but following this Hallowe’en, I hope to turn it around into a real treat.
You see, over the summer, I developed cachexia (loss of muscle) in my left inner thigh (adductor muscles), then I started getting back pain, which has gotten progressively frequent and intense, and throughout this, my weight really started to drop off me. To give you some idea, I am 157cm tall, and on April 27th I was 45kg (7st 1.2ibs), compared to October 26th, where I’ve fallen to just 39kg (6st 1.98lbs).
On the BEACON trial at Sarah Cannon, they only use CT scans for their data research, so, though they gave me a head CT scan to review whether the cancer had spread to the brain (as I have personally known 2 patients both on the BEACON trial with me, whose cancer had spread to the brain, causing similar symptoms.) Thankfully, nothing suspicious was revealed. It was unsettling though that my symptoms continued and progressed. This is why I asked my oncologist (separate from the Sarah Cannon Research Institute team) to send me for a PET scan, as I wanted to know if any activity was going on in my lymph nodes, which is where my cancer metastasised. Unfortunately, I got results I did not want. The CT scans showed quite a number of lymph nodes had been steadily increasing in size since August 2019, and the PET scan showed a cluster of enlarged lymph nodes and that the cancer was now active in nodes near my coeliac axis (nothing to do with me being a coeliac by the way).
MDT meetings were held to discuss my situation. In the meantime, I was referred to a rheumatologist in regards to my cachexia, who sent me for nerve tests and two MRI scans, which showed yet more enlarged lymph nodes, this time on the left side of my pelvis/groin area, pressing against my obturator nerve.
Towards the end of September, I saw a dietician, and in early October, she prescribed nutritional drink supplements for me, which I hope are starting to make a difference, albeit very slowly. Apparently, it’s more difficult to put on weight, especially when you have weak to no muscles, as it is hard for the body to ‘create’ muscle from nothing, as I have no fat to work with.
In the middle of September, it was discussed by the MDT to give me radiotherapy. Since then, this has progressed to being given a nerve-blocker procedure for my back pain. This nerve-blocker was an endoscopy procedure, where an ultrasound camera went down my oesophagus, and via images on ultrasound, the doctor could ‘see’ the targeted lymph nodes. Once located, a needle protruded from the probe and injected alcohol to numb the nerve endings in the area, with the aim of lessening or stopping the pain. Sadly, it didn’t help, and I am continuing to take co-codamol daily. This evening, I discovered that I have osteopenia in lumbar spine 1-3 and osteoporosis in my lumbar 4, so I will be referred to a specialist for treatment for that too. Let’s hope I don’t fall over and break any bones to add to my situation.
More importantly, following several meetings, scans, procedures etc, my diary has been scheduled to begin Cyber Knife Therapy and Radiotherapy, targeting my lymph nodes near my coeliac axis and left groin respectively, beginning on Wednesday 3rd November, for 2 weeks. I am intrigued as to this next chapter of my treatment.
It is unsure yet as to the plan immediately following the end of my radiotherapy in the middle of November, but there is a high probability that I will be given intensive and aggressive chemotherapy. The chemotherapy drugs I was on back in 2016 and 2017/18, were FOLFOX + 5FU + Avastin, and FOLFIRI + 5FU + Avastin. I believe the plan may be to use ALL of these chemotherapy drugs at the same time. The hope is that, because it has been so long since I finished chemotherapy, and because I had a short-lived success with the original FOLFOX with a ‘clear’ scan back in October 2016, that the cancer will have lost any resistance to the treatment.
Well. There you have it. Those are the details and facts of my tricky situation since the summer and more recently the outcome of realisation of what those symptoms mean.
What I haven’t told you is how I have tried to cope with it all. As you probably expected, at first, I was my usual upbeat-self. After the head scan came back negative, I assumed the back pain and muscle wastage was a knock-on effect for my body dealing with my frozen shoulder. So, to address my pain and inner thigh muscle, I simply adjusted my exercise plan to incorporate gentle strengthening poses for my adductor muscles and shoulders, and took paracetamol. Whereas the weight loss…well, I avoided looking in the mirror, so I couldn’t see how weak and ill I was becoming.
However, during August, I couldn’t avoid the severity of how my body was feeling and how this was having an impact on my ability to carry out every day tasks. I was becoming even more weak, tired and low in energy, I couldn’t sleep for more than a few hours at a time, and I was finding it difficult to eat (and I love to eat!). This is when I requested the PET scan to see what was happening. As I’ve said before, if something doesn’t feel right, it’s probably because it’s not right.
In regards to feeling that something wasn’t ‘right’ with me, though, I can’t tell you how much I was hoping to be proved wrong. When the results came back and the numerous medical appointments, procedures and scans were being set up, I can only admit that I was scared. Yes. Me. Scared. I mean, I’ve had brief moments of doubt or uncertainty before, but I’ve always been so quick at spinning those inner voices 180 degrees before, but this time, was the first time I’ve allowed myself to wallow and sit in despair. This was and at times, still is, unknown territory for me, and I hate it. I hate that I am unsure how to deal with my emotions and my thoughts. It has been especially difficult, with 4 dear friends all dying to cancer this year. All of them were so strong and giving. They are my inspiration:
Lynette Clarke, Patricia Servante, Beth Purvis, Sophie Sabbage
They were all so full of love and life and of spreading this joy and meaning they lived by. I can’t help but smile and be in awe when I think of them. As always, I am so grateful and thankful to everyone I meet on life’s journey, especially those with pure souls like these people. They truly were angels on Earth. (I am not religious, but I am spiritual, and I mean this in a complimentary way, to say how I admire their strength to be authentic and true to themselves for the time they lived here, in this physical world.)
Whether it is drawing strength from loved ones who have passed, or those who have contacted me out of the blue, or those who are regularly in my daily life; I believe that it is the strength, kindness, support and love that they give me, that has helped me to lift myself up. Accepting that it is ok to feel angry, confused, scared and frustrated. To feel all the emotions, recognise them and acknowledge why I feel them, then to move on to the next moment. Whatever the reason, I am once again becoming more mindful, more full of gratitude, and more myself again. I have spent this weekend with my family and friends, and I am so lucky to have them.
Last night was Hallowe’en, and seeing all those little trick-or-treaters, full of possibility, hope and excitement was wonderful – they definitely were not scared! I could learn a thing of two from them. Who knows, maybe the cancer will be scared by the excitement of my new treatment, and decide to shrivel up, cower and disappear. At any rate, I hope my fear will disappear for a bit, so I can focus on what is important in my life.
What a true insight into your life at the moment
Amie , your strength and determination is infectious. Your a strong talented women with a lot to give. I’m very happy I got share the stage with you.
Stay strong, stay hopeful
I’m sending you loads of love ❤️
That photo of you in the restaurant is just wonderful! Thinking of you as you embark on this next challenge, and sending love 💕