What a week!
Unfortunately, not in a good way either, but that’s the rollercoaster of cancer, and of life, I guess.
About a month ago, I began experiencing some pain in my left shoulder, but as I am usually lugging about overloaded bags of shopping or a heavy hoover, bin bag, etc, I believed this to be nothing more than a pull.
I did mention this to my oncologist although neither of us was too worried at this point as I felt fine otherwise. I had expressed concerns over this being referred pain (this is how I got to the diagnosis stage in the first place) but as it was affecting my left side, I was assured this was highly unlikely to be from the party currently going off in my bile duct and liver. Plus, all the tumours involved in these areas have recently shown great improvement from the Pemigatinib treatment, so I was satisfied with that.
As my recent scan had shown a marginal growth on a couple of the spots in my lungs, my worry became directed at these, although even I wondered if such discomfort could be possible with them being relatively small.
A couple of weeks later, this discomfort was really proving to be a pain in the butt. Going for my treasured walks was more of an endurance test and I was constantly trying to massage the pain away, without success. I purchased a shiatsu massager in the hope it would reach deeper into the tissues and give me some respite from it all, a hot Epson salt bath, hot water bottle, adjusted my sleeping environment, nothing worked.
It just got worse, and the pain was spreading, down the underside of my arm, and causing a tingling sensation in my left hand. I also found driving hard, as I struggled with full movement in my neck, and as much as I love them, an over-enthusiastic hug nearly sent me through the roof.
By last week, a combination of pain and a new worry, that I may have developed a pulmonary embolism – due to a couple of new symptoms and the knowledge that cancer patients are particularly susceptible to them- led me to call the hospital treating me and I was advised to go to our local A&E. Luckily, due to my circumstances, I was able to go to the Same Day Emergency Care (SDEC) unit, who, also concerned it may be a PE, arranged some specific blood tests and a CT scan.
To say I was shocked at the results of this scan is an understatement. Although an embolism was ruled out, they identified a tumour on my spine. Yep! The party has danced to yet another area of my body. I am stoic when dealing with this journey, but I barely made it to my partner’s car before breaking down. I couldn’t, and still can’t, believe this has happened. I have always had a niggling fear cancer would end up in my bones or brain, and so this new information has proven harder to process than anything I have previously had to deal with in the previous 14 months.
The following day I spent at home, struggling to hold it together and still try to be positive for everyone else. I heard nothing from the hospital treating me until much later, but my oncologist called me with a plan for me to attend the following morning for further blood and an MRI scan for a more detailed picture of this new tumour.
Luckily, they were able to get some good images although the news was anything BUT!
The tumour is on my C7 vertebrae and surprisingly for us all, has left the bone affected badly damaged. This is clearly one aggressive tumour! The pain allllll made perfect sense though.
My option was to have radiotherapy, either 5 courses over as many weeks, or all 5 in one.
Given my high level of fear at the time, and the pain I was so desperate to rid myself of, this was an easy one.
Let’s give it everything and NOW! I make no secret of the fact, I really don’t like either chemotherapy or radiotherapy, and believe they ultimately, make the patient worse off, due to the havoc they wreak on a body. There’s a reason, no one is in the room at the time and/or wear copious amounts of PPE!
But I’ll be the first to admit, right there and then, I was scared stiff and utterly fed up with the pain, which had become unbearable. I wanted this GONE, and so it became a case of short term loss for long term gain.
So, after another CT scan to help them determine where to target the radiotherapy, I was sent down for treatment. Although completely painless, by the time I had reached home afterwards, I found myself in the most horrendous pain, to the point I was begging for help. From whom didn’t matter.
This was probably due to the initial tissue swelling and thankfully, settled down eventually once I was more comfortable and had some morphine in me.
Unfortunately, the bad news this week has continued. I am currently trying to now process the news that after today’s meeting at the hospital to look at my recent scan images, they found that all tumours have now grown. I will now no longer take Pemigatinib, as it is clear this is no longer working for me and will begin FOLFOX in the next couple of weeks. I can’t tell you how devastated I am to no longer be on Pemigatinib, it is such a wonderful treatment, and I believe this will be such a blessing for so many out there. Hopefully, in the very near future, more will follow.
I feel as though I am drowning in despair and fear. Although I ultimately refuse to believe this will kill me, I have found myself almost wanting to give up “the fight” (still hate that expression, but currently hate cancer more) and just curl up in bed, never to come out again. Maybe this feeling of hopelessness is worse due to the stress in my personal life. Who knows. But currently, it is too much for me.
Having said that, I also know that lurking beneath these current feelings, lurks my determination and fighting spirit. I just need to let her come out.
I apologise for this less than inspiring post, I hope to have some positive news in the near future.
I really hope you are all out there, giving it everything you can. Don’t ever lose that hope…..EVER! We are all different, even when living with the same cancer. We are not a statistic…..ignore any of that rubbish!
Much love and strength,