There are a few precious seconds when I wake up each morning when I forget that I still have cancer. I then remember and I get my head into focusing on how I will maximise my day and make it positive.
Yesterday, was one of those days and it turned out to be much better than I had expected and as we were driving home last night I said to Trend that I was really feeling quite ‘Zen’ and felt that weirdly, I felt that I had had a nice relaxing day, which brought the Bill Withers song to mind.
Don’t get me wrong, I know that this is not going to be easy and that I am going to have some very difficult days ahead, but I will deal with those when they come.
So what happened yesterday and how might it play out? Early yesterday morning Bridget took me in and I had a port-a-cath inserted just under my left clavicle so that getting the chemo in getting blood out will be easier. It was done under general anaesthetic, so minimal pain. After she brought me a nice coffee, we sat and enjoyed banter with the staff as they came in and out doing various tests and preparing me for the chemo, we read the papers and did some emails and made plans for Christmas. Nice.
Trend arrived to relieve Bridget just after lunch and after some pre-hydration fluids they started the first chemo drugs – oxaliplatin and fluorouracil – on a very slow drip. I will also get Avastin starting in the next round if my blood pressure and protein levels allow it, but I couldn’t have it so close to the port-a-cath surgery. Once that was underway, I sent Trend off for more nice coffees (Green Tea is great, but only to a point). Finally, early evening they connected my sporty little chemo pump and presented me with an ordinary bum bag to carry it around. It’s actually quite easy to cope with – I can move around freely and you can’t really see it. I can shower with it, I slept with it reasonably well last night and I will go out and about with it. It’s only on for 46 hours and a nurse will come to the house early Friday evening to disconnect it.
In terms of side effects, everyone is different, so I don’t know which ones I will experience. The one that kicked in straight away has to do with the cold. I’ve been warned on the first 3-4 days after the treatment not to drink cold drinks, to be careful about breathing in really cold air and to wear a scarf if it’s cold, as it can result in frightening throat spasms. They aren’t dangerous and the answer is to remain calm and take deep breaths, but it’s apparently quite terrifying to experience. So, no ski trips this winter – it’s all about the sun! The cold also affects my fingers and toes giving me pins and needles (which I am experiencing as I type this now). As an example, I turned the door handle on the bathroom last night and walked onto the marble floor and instantly both my fingers and toes were tingling. I then compounded it without thinking by washing my hands with slightly cold water. Even the metal handles on the cupboards in the kitchen set my fingers off. So, my lovely spotty leather gloves are all coming out as are all of those cosy cashmere socks I received last year (Ann – I had my red ones on to come home from hospital yesterday).
I may experience nausea but I have medicine for that. I will likely get mouth ulcers and have been told to gargle after every meal to try to minimise them. I’m much more prone to infections and need to keep my distance from sick people where possible but I have emergency antibiotics if I do get ill.
For those of you who know me well, you know that I love to get a nice new notebook for a new project or adventure and this is no different. I need to weigh myself, take my temperature and blood pressure daily, so I was able to start a fresh notebook yesterday – it’s purple and has Animal (University nickname) from the Muppets on the cover – brilliant.
Pam, my lovely Irish lead GI Cancer Nurse said that they key will be to really listen to my body and let that be my guide. The typical nadir is 7-10 days in and if I feel tired, I need to stop and sit on the soft all day as that will speed my recovery – toughing it out and pushing through will not. She encouraged me to be active and keep my fitness up and she said that for some people, the chemo actually makes them feel better (I’m not kidding – I wrote it down in my new notebook).
So many of you are sending such loving and supportive messages and asking, ‘what can I do’, ‘how can I help’? First of all, thank you so much. I can’t begin to tell you how important all of that love and encouragement is in helping me to fuel my resistance tank. You, my family and friends are what give me, the strength to go on fighting and the bounce to get back up quickly when I’m down. So keep it coming, please!
The other thing that really helps with my resilience is keeping busy and having a strong sense of purpose. Looking after my family is number one, and after that, I need to keep working and I need to keep up with my 30% Club speaking engagements, interviews, etc. as best I can. As we were driving back from Basingstoke a week and a half ago digesting the news, I said to Trend, I’m due at Royal Bank of Canada tomorrow morning at 8:30 to do an ‘in conversation’ presentation on the ‘30% Club, Agile Working and Resilience’ – I won’t be able to do it, I need to cancel. We talked a bit more and both of us realised that it was exactly what I needed to do. When I arrived at 8:30, Harry Samuels, the European Chair greeted me and told me that in honour of my presentation, they would like to donate £1500 to the charity of my choice. I automatically said The Pelican Cancer Foundation, which is dedicated to curing and improving the quality of life for patients with pelvic and secondary area cancer and where my amazing surgeon Mr. Moran is a trustee. I knew that I had made the right decision and I thought that I had managed to deliver the talk without any problems. The next morning I had an email from a colleague in Australia forwarding on a note with some ‘nice words from Harry’ – ‘By the way, Brenda wasn’t just great, she was incredible. The power of her messages combined with her articulate delivery left a significant impression with the audience.’ Harry had no idea that I had almost cancelled and was worried I wouldn’t be able to do it because for the time I was in front of the audience I wasn’t thinking about my new diagnosis or what was to come, I was fully focussed on some of my real passions and I was committed to trying to make a difference. It was a good lesson for me.
So I am keeping everything in the diary and am planning to forge ahead and if I have a bad day and need to spend a quite day on the sofa recharging with a good book or Netflix, I will ask someone to stand in for me and accept that even Wonder Woman needs a day off every now and then.
Big thanks to Bridget (aka Bid) yesterday for her support and following her instructions to the letter. When asked by Brenda to draw something funny on the whiteboard for her to see when she came back from theatre, Bridget duly obliged. She was mid-way through drawing her depiction of Brenda’s surgical undies when the ward nurse put her head round the door. A hurried explanation, followed by an ‘I’ll get me coat’ type sideways exit was halted by the nurse…’May I have my marker back please?’