For Whom the Bell Tolls

5 minute read time.

It’s been a roller coaster 24 hours.

Yesterday was an Oncology review at Musgrove Park in Taunton. I met my regular oncologist and one of the named nurses to find out what the latest scans showed. Two weeks ago, I had an MRI scan and a CT scan. To check on the cancers current position. The last time that we were actively fighting the cancer was way back in February. The last time I had scans was April, and they showed minimal disease progression. And since then, I have been getting as fit as I can in anticipation of the massive Total Pelvic Exenteration surgery, and to ensure that my heart was up to this, last week, I had a fairly large cardiac procedure called ‘mitra clip’.

So, this is an important review. If the cancer has stayed put in my bowel and groin lymph nodes and not grown, we are on for the chop shop.

The St Mark’s surgery team have been in touch and a video conference is scheduled with them for the following day (today) They will already have seen the scans, and this appointment fills us with optimism that the cancer has not spread, why would they want a consultation, if not to start the ball rolling for surgery?

So…here’s what the scans showed…

The cancer in my bowel has hardly changed.

But there is evidence of cancer in my left lung.

And there is evidence of cancer in my liver.

And there is evidence of cancer in my right lung.

The Oncologist has been in touch with the surgery team and tomorrow they are just going to tell me that the surgery will not be going ahead. The Oncologist and nurse are clearly upset to have to tell me this and try and explain what other strategies we can now deploy. I am not really listening, and I think they understand this; The Oncologist says that we can meet again in a fortnight and decide then. The only actual action appears to be more chemotherapy, using different drugs to last year, and the nurse gives me copies of the information to take away and read. Or we can opt not to treat until I become symptomatic.

My cardiac procedure prevents me from driving for four weeks, and a friend has ferried me into the hospital. They collect me and take me to their house for lunch. I am feeling quite numb.

This morning, I had a video consultation with the St Marks surgery team. They explained that they will no longer be offering me surgery. The operation is very big and the recovery period long. The cancer has already advanced and they simply don’t think that I will benefit from the operation.

Gosh, this is not where we thought we would be at all.

It has been a year of absolute lows, interspersed with a few slightly higher plateaus. Right now, I am struggling to ‘smell the roses’. I was hugely worried about the impact of the TPE surgery. I really didn’t want to have two stoma bags and be the owner of completely non-functioning gentlemen’s equipment. But this was the route by which my cancer was going to be ‘cured’. Now, the future is really unclear. Last years chemotherapy became something that I grew to dislike intensely, by the end of three months, I was sick and weak; and then to be told that it had not worked. Do I really want to go through that again?

I am finishing this entry in the relatively early morning of a new day, 6.20am on Friday 26th July and the deep resilience that we humans have is beginning to surface again. This is definitely because the sun is shining in the garden. Our building project got properly underway this week, and we have a foundation trench and footings completed, and signed off by building control. A rather brilliant joiner has also been working for us and he has completed several small jobs, including getting our old garage doors working again. And today, we will go and look for flooring materials for what I am, in true delusions of grandeur, referring to as the garden wing. And I have already had one small victory today; the cat has an appointment with the vet and I have him trapped in the house. He knows that something is up and is keeping a low profile now…

The garden birds are onto second broods, and possibly thirds, and we are quite overwhelmed with a large gang of small fluffy sparrows and starlings. And young blackbirds, blue tits and dunnocks have also been seen. I may even go and smell the roses, although our small garden is having a year off, as it is having to cope with the builders, complete with mini-digger, that they managed to drive through a couple of very narrow doors to get on site.

I do feel immensely sad. I do feel cheated. My father died shortly before his 67th birthday, and I felt that he had been robbed of his retirement. I can clearly recall his funeral, I was there with my 6 month old second child, our oldest son, I was 33. Three generations, 66 years, 33 years and 0 years. Looking ahead, his 66 years is almost certainly unachievable for me, and my youngest son is only 23 years old. My father had 12 grandchildren when he died, I am the second youngest of his 6 children, and I have none. I had envisaged being a wise, kind and moderately eccentric granddad, introducing a new generation to the small wonders of nature, with a head full of stories and pockets full of owl pellets and fluffy sweets.

That’s not the hand that I have been dealt.

But, I am surrounded by wonderful people. And I do appreciate you.

This is reading a bit like an endpiece; it’s not. There is plenty to do and writing this nonsense is part of my ‘coping strategy’. This afternoon, I will be talking with comedian Jon Holmes. He has/had prostate cancer and is presenting a radio series on his experience, with the subtext being to encourage men to talk about the ‘C-word’. I have shared my experience through this journal and face to face with friends and family, and ‘talking’ has certainly helped me. Ultimately, it makes no difference to the outcome. But, the outcome is the same for all of us, even those who don’t get cancer. It’s what we do on the way that defines us.

Enough of this contemplative nonsense, its time to feed the birds, smell the roses and wrangle an uncooperative feline into a transport box.

(25th and 26th July 2024)

Anonymous
  • Sorry to hear this latest development. Life is definitely a bitch at times and you do keep drawing the short straw. Keep talking. 

  • Oh Dignahtee I am so sad reading your news. You have endured so much with strength, dignity and graceful humour which has been conveyed powerfully through your writing. You are an inspiration to many, myself included. Even with tears leaking out of my eyes you have still made me smile...it's no mean feat to successfully corrale and wrangle a cat ! Enjoy the roses , mine have gone over so I'm sniffing the lavender. Thinking of you x

  • Thank you. I hope you are doing OK? It was not the news we were expecting. I will definitely keep talking

  • Oh, thank you so much. The cat wrangling was interesting, and successful. He was under the bed, in among many boxes. I had to crawl under and join him, whereupon he glued himself to the floor and I had to scoop him in my arms and drag him out while wriggling backwards. Fortunately he does not bite and freezes when properly cornered. 

  • I am so sorry to hear your sad news.  I look forward to reading your blogs and when I saw this one I was really hoping that it was going to be different news.  Keep talking and blogging :0)