Here it is, the final update for primary chemotherapy that really began in early July 2018 and finished on the 4th of January 2019. Before it began I knew it would be hard, but it turns out nothing prepares you for chemo. We barely began and had to stop for me to have a colostomy. From then on we rolled with the punches. Stent changes and virus’ cost me good weeks and the pain from flares was like nothing I had ever known.
Having already been admitted to the hospice before my final cycle, and the doctors there deducing that I had suffered an immunoresponce to the chemo which caused the pain flare of all pain flares, there was some debate about whether or not I should go ahead with the final cycle of treatment. The doctors there felt perhaps 7 was too many cycles, yet when I went in for my pre chemo consultant appointment the oncology team there felt it imperative that I finish the course as it were. They admitted they couldn’t promise I wouldn’t have another reaction, nor could they pinpoint the drug causing the issue, but they felt it imperative I finish the course as it were.
In the end, with two doctors giving wildly varying opinions on the entire situation I decided it was just down to me. Ultimately, despite the physical symptoms I was risking, I knew I had to do it. I would never be able to let it go if my final scan then did not give the results we are hoping for. Mentally that would hit me much harder than the chemo ever could. I would always wonder if I’d just done that extra cycle things would be different.
So the following day I was transported from the hospice to the hospital by ambulance. The session itself went without incident and even ended earlier than we had expected. I had an ok first day, quite productive in fact, but then it hit. Oh boy did it hit. The awful sweats, the weakness, the nausea. Along with another immunoreaction. Every joint in my body was burning, my feet on fire and my hands too. I spent a lot of time slightly sedated in order to quell the fiery feeling. There were times I would wake in such pain I couldn’t move or talk so I had family stay with me a few nights to get me through as I had moments I was so weak I was unable to get to the toilet alone, to wash alone. I still need to sit in the shower.
I very quickly became incredibly glad I was in the hospice. Despite the reaction being so harsh and quite scary I always felt I was in safe hands, the nurses and doctors were incredible with me and I always felt listened to and most importantly, cared about.
Eventually, I began to be able to cope alone again and even better, the doctors were able to get me off of the driver which was a huge win for me. This changed my world because I was finally able to shower or bath alone. For months I had bathed with someone holding my driver for me, so that freedom was huge, bathing alone for the first time in months was just amazing. It really is the simple things in life. Talking of freedoms, while I was in the hospice some incredible friends of ours also contacted me to say they were able to give me my own wheelchair to get around in. The pain leaves me unable to walk too far and a chair gives me the freedom to get out and about without overdoing it too much. It opens up my world so a huge thank you to the Marshall’s, your kindness opened my world right up. Thank you.
During my time in the Hospice, I was incredibly glad to meet their occupational therapist, Colette who introduced me to a couple of new crafts. Silk painting and glass painting. It was great for me, they were quiet, calm things I was able to do and just focus on them, take myself out of my own head worrying about drugs, cancer and treatment etc. So, Colette, thank you for that. I now have my own kits to do these crafts at home and I am so looking forward to it!
Now that I am home again, I’m still going through chemo related symptoms and managing my pain. I’ve had my final scan and now we await the results of that scan to know what the next steps in treatment are. It feels kind of odd, a bit like I’m in no man’s land. So I am trying not to think too much about things and just enjoying the kids and my family and friends, doing nice things and keeping my mind busy etc. You might suddenly find me producing a bit more blog content, I’ve got a few ideas of some things to share with you all.
So, until next time – love to you all. Ladies, if you are due a smear BOOK IT NOW. Gents, ask your girls if they are due one and if they are, make sure they book it and go. Let’s look after ourselves. Never fear the smear!