Processing and Living Through the Bad Times

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,

Megan x

4 thoughts on “Processing and Living Through the Bad Times”

  1. Sad to read this Megan but glad to hear the oncologist are giving all they have. I recently have not been able to tolerate gem/cis and put on 13kg of fluid . 2 hospital admissions in 2 weeks ( Nothing could be drained as all under the skin and no pockets ( this is now starting to subside but am hoping that I’ll be able to have 4th infusion on Wednesday but I fear that oncologist will see me Monday and say no)
    What days are you doing your folfox? Hope to catch up with you at Weston park x

    1. Hi Donna, I am so sorry to hear this. It sounds very painful. Does your oncologist have a backup plan? There are a few clinical trials available at the moment. I have asked one of the doctors to send letters out to see if I could get onto one of them. Might be an option for you too, and maybe a gentler type of treatment. I am also at Weston Park on a Wednesday. Not next week but the week after. I’m really not a fan of FOLFOX so I am grateful to have been given a lower dose for now. It would be so good to have a catch up next time we’re both there x

  2. Hi Megan. So sorry to hear of your struggles. My wife has made it 2 years 3 months with bile duct cancer after having colon cancer the year prior. She first had three gem/cis treatments but it made her ill. She then had 3 rounds of Yervoy and opdivo which has done wonders against her liver tumor and has eliminated the lymph tumors. Have you tried immunotherapy? It’s very dangerous stuff but sure kick the 💩out of the cancer. They had to stop the treatment due to damage to other parts of her body. It pretty much destroyed her adrenaline gland but She’s been in remission for over a year now. – regards. Everett from Gig Harbor, WA

    1. Hi Everett, thank you so much for getting in touch and sharing your dear wife’s story. I am so heartened and pleased to hear that she has now been in remission for over a year now. I have asked about immunotherapy but have had absolutely no joy. I will definitely raise the subject with my consultant at my next appointment, so thank you for mentioning this. I hope her body has been able to heal from the damage caused. Although I felt I really needed a quick blast of treatment for the tumour in my spine, I underestimated the intense effect this would have on my overall health. Maybe in hindsight, I would have asked for a lower dose, but it’s done now. I have, up until then, been incredibly lucky to tolerate all treatment well, but since the radiotherapy, there has definitely been a decline in my overall health and the pain from this, unbearable at times. However, I am feeling a lot more in control again now and positive. You sharing your wife’s story has given me so much hope. Warmest wishes to you both. Megan.

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