Today started too early for me as it was around 4am when I finally managed to get off to sleep last night, with Jenny struggling through the night needing quite a bit of pain relief. We had seen Dr. Herzog and Dr Wright around 11.15pm last night and discussed our options for the next few days with regards to pain management and we discussed whether we needed to consider re-introducing the IV morphine pump. It was decided to give it another 24 hours before making a decision. This morning there was some confusion with Jenny’s oral medication which caused us some issues as she didn’t get it on time for a variety of reasons which I’m yet to get to the bottom of and frankly haven’t got the time to try – it was just annoying, especially considering the issues Jenny was having. Once washed and settled, Jenny spent most of the day asleep, which is always a good sign for the next few days – the body tends to sleep when it needs to.
Dr Herzog & Dr Rosalis came to see Jenny late morning and spoke with me as she was asleep at the time. It was clear to both of them that Jenny was struggling with the current pain management regime. I’ve always had concerns about returning to the syringe driver as it has implications back home. However, Dr. Rosalis suggested that we may consider opting for a small pump back in the UK which can be changed every 3-4 days, meaning Jenny could be at home rather than require daily nursing care in Marie Curie. It is important to both of us that we return back to our home when we land back in the UK, and all the organising we will do will centre around this.
Fast forward to this evening and it was clear that Jenny was struggling again. The idea of oral medication allows independence and freedom for her, but this seems a bit insignificant if she is bed-bound 24 hours a day. 10 days ago she was out on her scooter and eating a meal in the local hotel and today she can’t really move very much and only seems to be out of pain when asleep. We sat down and I suggested it may be time to go back to the syringe driver and also discussed Dr. Rosalis’ suggestion with Jenny. I could see by the look in her eyes that she agreed. She had given it a good go with 7 days of oral medication, which whilst semi-effective just wasn’t cutting the mustard and therefore the decision was made to return to the IV pump this evening. She was on the limit and this was the right decision.
Lance Armstrong was once quoted as saying “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.” We all know which one Jenny has chosen in the past, continues to choose now and will always choose in the future.
Skype is proving an invaluable tool over here and I often keep in touch with family and friends. It can make a huge difference seeing people, as well as talking to them, and with wi-fi etc it’s pretty easy. Last night I spoke with my Sister-in-Law, Georgina and the kids, Daisy & Jamie who are home from boarding school for half-term. My brother is away with work this week and I believe he is planning on visiting the clinic in the next few weeks if we are still here. I also managed to catch up with Jenny’s friend Sue King in London this morning. I’m hoping she will be able to make it over at some point soon as well. I’ve spoken with Sue many times but have only met her once and we instantly hit it off. She was a close friend of Jenny’s at school and beat cancer as a teenager. She is an amazing character with a real wacky sense of fun and adventure and a hugely creative brain which gives her all the ideal ingredients to raise her 2 daughters Madison & Bayleigh full-time. I always enjoy talking with Sue as we have a similar off-the-wall sense of humour which at times could possibly be described as “perverse” or maybe just plain weird.
I was also feeling a little sore from my gym session with Alex yesterday and, as predicted, has gotten a bit worse through the course of the day – tomorrow will be a killer! I had another massage from Rochelle at lunchtime and have booked in again for next Monday. This afternoon I walked over to Nidda in the snow with Alex and Lisa (which included a short sharp hill run initiated by Alex) which we felt earned us a coffee in the market square. I wanted to try to get a valentine’s card and gift for Jenny (14th tomorrow!) We had a good laugh and I can see these 2 guys being my saviours over the next few weeks as they have no definitive leaving date, whilst our other close friends start to leave this week starting with Sylvia in the morning. She popped in to see Jenny this evening as she is off early in the morning – we are going to miss her but she is due back in a months time so our paths are bound to cross again.
In the information booklet provided by the clinic to patients there is a large heading on the first page which states “Every day lived with joy is of infinite value”. Tonight it was time to put it into practice and take control back. Tomorrow the fight back starts – bring it on!