Well, there is quite a bit to update you on! A while back I was offered a bed in the local Sue Ryder hospice after a particularly trying flare period in one of my chemo cycles but I turned it down. It simply didn’t feel right at the time to leave home, my family, my beautiful daughters. I promised I would keep it in mind. Cycle number five came and followed the usual system of my flare beginning at day seven and while lasting a day longer than usual it passed as expected, but on Friday of the second week of chemo came an unexpected addition to the cycle, leading me to decide it was time. We needed more help. But, like all good stories, I’ll start at the beginning of the cycle.
I’d felt crap for a long while with my cycle this time, really lethargic and needing a few more morphine jabs than typical in the build-up to my day seven flare. The flare arrived bang on time and lasted a bit longer than usual leaving me feeling worse than I did before for a few days.
When I woke up and I actually felt alright on the Thursday of the second week I seized the moment and got my mum and dad to take me into town with the help of shop mobility. I got to ride around town in style on a hired wheelchair, complete with cushion, blanket over my lap and a shopping bag too – so I was what you might consider: all set. I joined shopmobility for a year because I wasn’t sure how long I’d be needing wheelchair assistance for. But, my god it felt really great to get out, to see something other than the same four walls as my living room, to do some Christmas shopping and achieve some house goals too. I did tire myself out, but I was looking forward to the following day: taking Olivia to see Jack In The Beanstalk, our local theatre’s pantomime. Her first theatre experience.
Sadly, I didn’t make it to Jack in the Beanstalk, thank goodness for Nana and Grandad who were able to take her so she didn’t miss out. You see I started with odd uncomfortable burning pain in my knees and lower legs in the early hours of the morning, by breakfast it was so bad I couldn’t walk without keeping my legs as straight as possible, and although I managed to make my bowl of cereal for breakfast, by the time I got to sit down to eat it the pain had spread through my arms to my hands and fingers, I couldn’t even hold my bowl.
As the day passed It got worse and worse, affecting every joint in my body, leaving me unable too tolerate the weight of a duvet and I couldn’t bare anything on my skin, I would scream out if touched. It got to the point I was screaming in pain, and Tom was calling people out almost hourly for pain relief. New drugs were added to my regime and my morphine driver upped by an extra 30mg, all in an effort to make me feel more comfortable.
All in all, it, whatever it was, lasted somewhere between 36-48 hours before it basically disappeared as quickly as it came. I imagine it was more horrendous for Tom and any family member that saw me like it. I remember the pain, but nothing else and I think that for that, I’m quite glad.
Over that period I had so much extra Morphine it was quite scary. Quite how I tolerated it all baffled doc’s but it just goes to show the pain levels within my body as I demonstrated no signs of having had too much.
During the Monday, two absolute angels got in contact with me. Firstly was my GP, who came to check me over, find out what exactly had gone on and talked things through with Tom as well me. He began to introduce the notion of me going into the Hospice and I cried, because however scary the notion of being 30 and going to a hospice was, I knew it was the time in my heart. We were out of our depth at home if anything like that was to happen again at home and it was getting harder and harder to get through my “usual” flare at seven days post chemo.
So when my second angel phoned me, Julie, from Sue Ryder and offered to try and get me into the hospice, I said “yes please, I really think I need it”. Being the angel she is she got it sorted for me, and I went in on the Friday by ambulance transport.
Thankfully I had two good days over the Christmas period which fell directly between me having the flare that may not have been a flare, well the whatever it was, and going into the hospice. My two girls loved the excitement of Father Christmas coming (Well Olivia certainly did, the baby just followed suit and acted excited) and they woke up to presents in personalised stockings. I had a bloomin’ marvellous Christmas dinner cooked up by the most wonderful mother-in-law a girl could ask for. We spent boxing day with a mix of two families together with my parents coming over to a traditional cold meats type meal but for the first time in a long time, two genuinely really nice days spent as a family together, without call outs and extra pain. Christmas was, for me, truly wonderful this year and I really hope the rest of my family felt the same.
Friday morning rolled around and I was picked up by two loved paramedics who took me off to the Hospice with Tom following close behind in the car. All of my fears about being in a hospice were dispelled very quickly after arriving. The atmosphere here is a peaceful, happy and calm one, as I’ve discovered here there are no problems only solutions and that they treat people, not patients. I have never felt more cared for and heard as a person before in my life. The doctors and nurses here are incredible human beings who take wonderful care of me and all the other inpatients. It seems cruel to limit it to them, even the lady who comes in to clean my loo and change my bins is smiling and happy. So maybe I’ll just say that everyone is wonderful, and always smiling. Perhaps because working here has taught them the importance of life.
I’m finding I am a lot more relaxed here, knowing that if I do (and I have) have some pain here I’m but a buzz away from getting it sorted and feeling more comfortable again, because although the district nurses do a wonderful job I am often waiting over an hour for relief through no fault of theirs, just a mixture of the distance they cover and finishing up with other patients etc. That can be really hard when you are in pain seconds turn into minutes, minutes into hours and hours into well… by then I think I’m fairly delirious and I’ve just lost count altogether.
One of the brilliant Drs here at the hospice helped me to talk through the second flare as much as I could, I don’t remember the Friday night nor the weekend that followed and did research to ascertain that she believed it was a reaction to one of my chemotherapy drugs. We discussed the possibility of skipping this cycle due to the reaction as I’d technically had six already, so was this really necessary? That was the question I was left answering, and I didn’t really come up with an answer until I was in the oncologist’s office.
Being in the hospice meant a shorter distance for me in the car to the Hospital for my oncology pre-chemotherapy appointment. We explained the reaction I had to the team there who believed it would more likely be another drug that the Dr at the hospice thought, however later admitted that all three of my drugs may have caused that reaction. He listened very carefully to my fears and did say he could reduce the dose of the drug he suspected, but he did make clear that it wouldn’t make a difference to my chance of reacting so it seemed fairly pointless to reduce the dose.
This is when I knew the answer to the question: It wasn’t about whether the Dr at the hospice thought this extra cycle was worth it or whether the oncologist disagreed about the drug that caused the reaction. It was about what I thought, what I felt was right and ultimately I came to the very strong conclusion that yes this cycle was necessary.
It was necessary because if I didn’t do it, and I have my end of cycle scan only to discover we haven’t got the result we need to move forward with the chemo-radiotherapy then I’ll always wonder if I had done that final offered cycle for the sake of MAYBE having a reaction if the result might have been different. I’m not sure how I could live with myself if that happened, I’m a total what-iffer and it makes me feel so utterly guilty. It would raise fear about how that might change my treatment options overall.
I knew I had to give it my all, so I can have that scan and know that whatever the results I had done everything I could to achieve the result we need to move forward. I don’t want to be part of the reason we can’t. Not when it’s as serious as potentially putting my life at risk.
So on the following day my sixth (Seventh) chemotherapy treatment went ahead. All went as smoothly as possible and the girls on the ward and I said goodbye for now as I’ll be back during chemo-radiotherapy for five more (but different) chemotherapy treatments to aid the radiotherapy. It’ll be hard going, but it’ll be worth it I hope. But that will be for the next update!
And it’s there that I sign off for my Cycle 5 cycle update. I can’t believe that as I write this I have already had my final cycle!
Anyway, for now, Love you all lots. Thank you for your unending support and love xx