…my parents and close family. Mum and Dad live up in Bollington, near my sister Fi, who is in Macclesfield. They are both frail. My Dad, despite being an active cyclist into his late 60s, had to give it up due to deteriorating eyesight and has become physically fragile. He was a teacher for much of his career; teaching very ethnically diverse, very poor children in an inner city primary school in Birmingham, then lecturing student teachers training at Oxford Poly. Mum, has Alzheimers’. She trained at Guy’s Hospital, and was a Neonatal Nurse, then Health Visitor, in Birmingham and Chalgrove.
I speak to them both, by phone, almost daily, and as my investigations progressed I kept Dad up to speed; though initially I didn’t intend telling him about the metastases or prognosis, or Mum anything until I could be with them, doing it face to face. Talking to both sisters we worked out a date when we could all meet up and be together as I told Mum. The plan was to stay overnight and be around for them both. A bonfire and fireworks party was planned for the evening.
I discussed this with Dad, who was concerned about how Mum would take the news, and the fallout once I left. I explained that Mum had to have the opportunity to hear about my cancer and treatment, that as my Mum, she had a right to get upset, and that we would be there with her, to talk and comfort her.
Before this I had decided to write something to put out on Facebook to let friends and work colleagues know what was happening, which I would wait to post until after I had spoken to the remainder of the extended family.
I called my Auntie Ann and arranged to see her, and my Uncle Bill.
I arrived to find Ann making sandwiches in the Kitchen. I joined her, and when she asked how I was, I explained; we had a lovely hug, and we went on to talk for a long time, whilst the tuna sandwiches began to curl. I asked if she would talk to Bill, my cousins, and their families, over the weekend; I have sometimes felt exhausted with talking about me and this bloody diagnosis.
We then went into the lounge where Bill was sat, in his chair, by the window, reading his paper. Like my Mum, Bill has Alzheimers’, but had also suffered a stroke, which has affected his mobility. He was on good form though, and we had a lovely long chat about how everyone in the family are doing. I love Ann and Bill and my cousins Steve, Mark and Jenny, and their families. When we were young we spent a lot of time at weekends sleeping over; Bill would take us on local archeological hunts. The strange, ancient bottles on the window sills of their conservatory were often the treasures we dug up. We were , and are, very close.
So Sunday came; I woke very early. I sat at the computer, with a cup of coffee, doing a final edit on my Blog post. I thought I would save it, but managed to accidentally publish it, a day earlier than I’d planned. It appeared on Facebook and Twitter and was read, before I realised. Oh well, not to worry… It turned out I had an early appointment with the Research Nurse at the Churchill on Monday, so an overnight stay, with Mum and Dad, was not going to be possible. Jacob and I drove up in the van, the day was windy and cold, but lit with beautiful sunshine.
We went to Fi’s house first, collecting her and her family, and sister Sally. We had some wonderful hugs, and a quick catch up. It was the first time we had met to discuss everything face to face. We missed having Mike there with us. He’s living in Delhi.
When we got to Mum and Dad’s, Mum had put out 4 cakes. We had coffee/Tea, then everyone took Mum off for a walk so I could talk to Dad. We talked for an hour. Dad and Mum have always been there when I’ve needed support, during and after my divorce and later my redundancy, but also for the smaller issues that crop up in life. I have never not felt loved by them (except for a short period during my teenage rebellious period, and that was me, not them). That’s the hard bit, that they are still supporting me, when at this stage of our lives, it should be the other way around…
We agreed that I would talk to Mum on the walkers return, but I also explained that I would like to include Dan and Carrie, my nephew and niece, in the conversation. I would discuss that with Fi and Rich beforehand. I did, They were happy with that.
So I sat next to Mum, as the others came in and joined us in the lounge. I started by stating that I’d been having trouble swallowing, the investigations, what was diagnosed and the treatment options. I finished by explaining that currently the prognosis is poor, but not putting the time to this. During the whole conversation I was watching Mum and the children and though there were a few tears, they were ok. Mum amazed me, any concern I had at how she might react vanished as she became Nurse Bailey, and Mum again, stroking my shoulder and back as I talked; at the end she told me not to worry, they would look after me; she would care for me, just as she had when I was a boy having yet another Asthma attack. I asked the children if they had any questions; they didn’t. We all had more hugs.
I’d asked Fi to take some photos of me whilst I was there. I wanted some nice pictures before I start treatment or get ill. We had some fun whilst doing that. Sally also said she now wanted me to talk to her two children, in the same way I’d spoken to Dan and Carrie. A lovely compliment on how I’d broken bad news. I’ve done it many, many times professionally, but it’s very different when it’s personal.
Dad was very tired, but the of rest us went back to Fi’s for the fireworks, and the giant sparklers.
The following morning Hattie took me in to hospital to discuss the Clinical Trial I have been put forward for. It was an early start. I was consented, then had bloods taken (13 large vials!), my vital signs, weight and height, and an ECG. This would all be sent off to the drug company who will check if anything falls outside the parameters they set for the trial. I find out if I can start Immunotherapy on Friday. It will be 2 intravenous drugs every Thursday for 4 weeks, then a combination of Immuno and Chemotherapy in 3 week cycles for 18 weeks. Chemo over Christmas.
We then had to wait a few hours for a CT scan. I had a lovely time wandering the corridors meeting staff I’d employed years before, some as newly qualified nurses, who are now Sisters, Matrons and Specialist Nurses. When the scan came I had to drink a litre of water, then lie on the table with my jeans round my ankles. There was a hold up. I’d only had a scan 3 weeks previously and the radiographer wanted to check if a further dose of radiation was really required. After about 10 minutes of discussion with the research team I was told the scan was cancelled.
Luckily, I decided to visit the Research Nurse before going, to check that the repeat Gastroscopy I’m booked in for on Thursday was still necessary. I didn’t fancy starving for 6 hours to be told that it was also cancelled. The nurse appeared sometime later to explain that actually, I did need the scan; could I return to the department?
A few minutes later I was back on the table, with my trousers round my ankles, receiving IV contrast.
I’ve finally caught up with the reaction to my original blog. Everyone has been very generous and the messages of support and love are humbling.
The Gastroscopy with biopsies is next.
P.S Ensure is a drink concocted by someone with a bastard sense of humour…