It’s been a long time since I last did a blog and lots has happened. So this is a rather long one. Ups and downs but that’s life.
I suppose I should start with a cancer update. Just before Christmas 2020 scans showed that Anastrazole had stopped working so on New Years Eve I started on a new treatment – Fulvestrant. Large, gloopy, slow, painful injections into each buttock every 4 weeks. To paint a picture, imagine me standing up, bent at a 90 degree angle over a bed with Natasha (my lovely nurse) sat on a chair behind me poised with syringes at the ready. Not a pleasant experience for either of us! Side effects were immediate and I have to give a huge thank you to Ian who chauffeured me every 4 weeks. Unfortunately, a scan in May 2022 showed that that drug had stopped working too. So the only option left is maintenance chemotherapy. Before I could start chemo, I had to have 4 teeth removed (long term late effects of radiotherapy). The extraction at Peterborough hospital was just the worst experience ever. Every tooth had to be broken into 4 and each root drilled out. Lots of local anaesthetic, pain, and stitches. The surgeon was going to extract a 5th tooth but after an almost 2 hours of struggling she said she wasn’t prepared to do it. And I told her I wasn’t prepared to let her! She was so apologetic and said how painful it had been for her. Err, excuse me – nice of her to say so but a far more more painful for me I think!
I’m now into the 3rd round of chemo – Capecitabine, 10 tablets a day for 2 weeks and 1 week off. Taken 12 hours apart 30 mins after food. Side effects built up over the first 2 cycles. I’ll sum them up in a few words ….. explosive bowels, dizziness, fatigue. That’ll do! You really don’t need the details. After a discussion with Pam (my oncologist) she has reduced the dose to see if that makes a difference. I’m anxious to get the next CT scan done to see if it’s working, the aim is to slow tumour growth and prevent new ones forming. Although she had to be convinced, blood tests are now done at my GPs, I get the results via the NHS app and forward them to Pam. Saves an extra trip to Derby. Everything is going smoothly apart from……
PRIDE Pharmacy. I have to collect my oral chemotherapy from Derby. The first visit was not a good experience. I had to wait for 2 hours in a packed pharmacy (all seats were full and people standing). Less then half were wearing face coverings. The pharmacist checked that I knew what to do with the tablets, I grabbed my bag and headed home. After a few days, I realised they had not given me the full prescription. They sent out the missing tablets BY TAXI!!!!! What a waste of money. I complained and Pam raised it at a management meeting. Apparently the regular use of taxis started in Covid when patients were discouraged from coming to the hospital. But it has carried on. Let’s face it, if you were offered the choice of going to the hospital and waiting for hours to pick up your prescription or having it delivered by taxi to your home, which would you choose? It must be costing a fortune! The second trip was worse. OK, most people wore face coverings and it was less crowded. But they didn’t have my prescription – it was in the ‘satellite office (whatever that is). After an hour and 40 mins, the pharmacist gave me 4 days supply, they’d run out of Capecitabine! How was that allowed to happen? Loads of unanswered phone calls on Monday, Pam’s oncology secretary got involved, and finally I got a call on Tuesday lunchtime. My drugs had run out by then and once again the missing drugs were delivered BY TAXI, arriving 20 minutes before I needed to take my next dose. Complaints are going in to PALS and to Magnus (acting chief exec), This can’t go on.
Covid. Being in the ‘compromised’ group I had to stay at home apart from hospital appointments. It’s easy to self-isolate at Rose Cottage and at least I could get out in the fields with Baldrick and Coco. I had a personal shopper (a good friend Peter), food parcels delivered by Lincs County Council and Ruth next door added me onto her Waitrose delivery until I got online shopping sorted. Now I’m back on chemo I’m having to be careful again – it’s still out there. I’ll be getting my 5th dose of the vaccine when it’s available. Zoom, Facebook, Whatsapp and Messenger have been a godsend throughout lockdown and beyond. Even my 83 year old sister Dottie is now a regular on WhatsApp and she’s a self confessed technophobe.
The next big thing was Jo, James and the boys moving to Cornwall. I put my house in Derby on the market, got an offer for the full asking price and all was going swimmingly until Covid struck. The offer was reduced by £30K – the cheek of it! So I took it off the market and in July, Simon moved in as a tenant. That was going really nicely until Roll-Royce made him redundant and he moved out 7 months later. The house went back on the market and it sold really quickly although it took 4 months for contracts to be exchanged. Note to prospective sellers – solicitors move very slowly and need a lot of chasing up.
The plan is to buy a house in Cornwall. I love it at Rose Cottage but at some point I won’t be able to carry on here. It makes sense to be close to Jo and the family (in Falmouth) and step-daughters Jo and Grace (in Newquay). Jo and Grace have been great doing viewings for me – it helps that Grace is in the building trade and knows what to look out for. It’s too difficult for me to do the long journey to Cornwall. The first time I drove down, I did my back in and had to have a Diclophenac suppository to counteract the pain for the drive back. The second time I took the train, my first time on public transport since Covid and I was a bit apprehensive. Much longer than the drive but no bad back. Unfortunately the journey back on the Thursday coincided with really bad weather forecasted for Friday so every seat on trains was full. Only 2 people in my carriage were wearing face masks – me and the lovely Lisa who was in the next seat. We talked non-stop all the way from Cornwall to London and I have a new friend waiting for me when I move.
Highs, lows and niggles
I’ve not been idle over the last 2 years. One highlight has been getting involved with CRUK. I was appointed as a patient representative in March and I have been so impressed! Lots of training involved before I was let lose on my first funding committee meeting in July. They are so well organised, professional and the cancer research ideas coming through are mind blowing! I can’t pretend to understand much of the science behind the proposals but I feel humbled and grateful to be involved. Please keep fundraising and donating!
Last year I was asked to do a presentation to the British Institute of Radiologists. Of course I said yes. Then as the date got closer I started to worry – I haven’t done a presentation at a conference for years. The audience was radiologists, oncologists, physicists. A scary bunch. I called on contacts at the East Mids Cancer Research Network (stats and data), Derby and Nottingham hospitals (video clips) and, of course, cancer friends from the NCRI consumer forum for stories and quotes. It went really well! I did a blog for the NCRI website – https://www.ncri.org.uk/bringing-the-experience-of-patients-to-physicists/ I got lovely comments from Roy, head of physics in Derby.
I was at the BIR meeting at the end of the last week and I had the privilege of listening to yourself, Nikki Blackler and Rachel Harris speaking about the patient experience. As a Physicist, this is not something that I generally get much exposure to (at conferences people from my profession tend to gravitate towards the meetings that have the greatest technology content by default). It was therefore something of a revelation to me to find that I was quickly convinced that I had made the better choice by going left-field and choosing Stream A on Thursday morning. I personally found that this rare chance to connect to people undergoing radiotherapy (and general cancer) treatment was enormously valuable (and, I have to say, emotionally moving). The fact that the insights provided to us came from those that have deep prior knowledge of our discipline greatly amplified the impact.
Since then I’ve had a couple of meetings with the Derby Cancer Management team looking at their website, recruitment to research trials and cancer information. I’m so pleased I said yes although it’s created more work!
I’m still doing tour guiding at Grimsthorpe Castle although it’s not so enjoyable. We are a very small team now and have a lot less work. The Castle decided to recruit volunteers and we ‘lost’ 6 paid people. Three weren’t offered contracts and 2 have gone to Burley House and 1 has resigned. We had a great team so it was sad to lose them but most of us still keep in touch. Taking groups round has always been enjoyable although I’m having to be more careful because of chemo – I always were my face mask, some visitors do but most don’t. I got very excited when a coach party, the Chippendales, was booked in! But it was the Chippendale Society. It was the hardest tour I’ve ever done, they were so knowledgeable and it took double the usual time. I’ve got a sneaking suspicion that it might just be volunteers next season but if so, the last 7 years have been fun and I’ve made friends for life.
Covid delayed the publication of Jo’s 3rd book, ‘What His Wife Knew’, until February this year. She’s now got a new publisher and editor and book number 4 will be hitting the shelves next year. Watch this space! Check out what she’s up to on @jojakemanwrites and her website www.JoJakeman.com .. Josephine started her own business last year, Wolfie’s Walkies. Go Jo! Check out what she’s up to on @wolfieswalkiescornwall and her website www.wolfieswalkies.co.uk
Baldrick and Coco are doing fine! They are such good company and keep me going. Baldrick is now 8 but is still a big puppy living up to his name …. stealing food. Frodo is still hanging on in there – we think he’s 20 years old now, deaf, almost blind, tatty, shouts a lot and is the most fussy cat ever where food is concerned.
Although I’ve had cancer for more than 20 years, I’d never taken the opportunity to go to a ‘Feel Good, Look Better’ workshop. My friend Annie was up for it, so I booked a session for us at the Cancer Centre in Peterborough. It was sensitively and professionally run by lovely volunteers. All of us were having cancer treatment and had lost hair or eyebrows or eyelashes. Or all 3. A question: why is it that when hairs are lost from all parts of the body during chemo, some grow back sparcely, some never grow back but the hairs on your chin are thicker and more prolific than before? That’s so unfair. We were all given a fabulous bag of goodies – YSL, Clinique, Clarins, Lancome! Since Covid the charity have lost volunteers and aren’t able to run as many sessions as they’d like. I’ve put a link to their website and if you know of anyone who might be interested, please share. The minimum commitment is 9 hours a year. lookgoodfeelbetter.co.uk
My grandsons. Since the move to Cornwall, Danny and Alex have grown so much – they’re 14 now and 6ft tall, towering over me. Danny is very much the performer, winning the school talent competition last year playing Einaudi’s ‘Elergy for the Arctic’, taking the lead in the school musical ‘We Will Rock You’ and did a performance of Nine Inch Nails ‘Head like a Hole’ – a brave choice and his own piano arrangement – at a school concert. I was able to see 2 performances (thanks Jo for sending me links on Facebook and footage captured on her phone). Unfortunately I wasn’t able to see any of the musical but he got standing ovations! Alex is very different! He’s much more of an active out-doorsey type. Basketball, gym, rugby (despite a problem with dodgy knees). Loves the sea and is making the most of the SUP and kayak. Having been ‘tongue-tied’ since a baby, he had it snipped last week. Poor lad is sore. It was fabulous having them (and Jo) at Rose Cottage earlier this year.
Apologies for the length of the blog! The next one won’t be as long although I’ve missed a lot out and hopefully (fingers crossed) I’ll be able to report some positive news after my next scan. A big thankyou to all the friends and family who’ve been there for me – you know who you are xxx
secondary2016 