Life is getting a little hardcore out here on Exmoor. In ‘Chop, Chop’ I described the massive Total Pelvic Extermination surgery that I am being lined up for. Now, one month after the initial video consultation with the surgeon, I am getting ready for a pre-op visit to London.
Last week, I had an MRI scan, a CT scan, 5 blood samples taken and an ECG. The MRI and CT were to check on the current size and location of the tumours. Has the long course chemo-radiotherapy shrunk them or have they grown and, most importantly are there any distant metastasis? Ah, medical speak, distant metastasis means, is there cancer in any new parts of my body.
Now my understanding of the 3 months of chemotherapy that I had before Christmas and the 5 weeks of chemoradiotherapy that I had after Christmas was that these may reduce the tumours and make surgery an option and make the surgery less invasive. This view was somewhat dispelled during the video consultation with the surgeon. I think that if I had been in the room with them, the door would have been locked and the operation done there and then. The surgeon appeared uninterested in the post-radiotherapy size of the tumours, after all, everything in my pelvis was coming out, so it really was of no consequence if they got bigger, or smaller or danced a rumba. As long as there are no distant metastasis, the operation is on. Well, as long as I pass the physical checks.
Did the scans show distant metastasis?
No
The scans also showed that the tumours had shown as much distain for radiotherapy as they had for chemotherapy. They had carried on slowly growing. One of the Musgrove Park nurses phoned to give me the news. She also commented on the particular type of cancer cells that I have. I had understood that these ‘mucinous’ cells were more resistant to chemo and radiotherapy. As has proved to be the case. But a new description has now started appearing;
Signet ring type cells.
My experience of signet rings is that they were very fashionable when I was young, especially among football club managers with a penchant for sheep-skin jackets. My, admittedly reasonably good, knowledge of history tells me that signet rings were used by important people to validate important documents. The word signet means sign and the rings had a raised area into which was engraved the sign of the wearer, be they a king or queen or other blueblood. Soft wax would be applied to a document and the ring pressed into the wax, making the document the legal command of the ruler.
Under a microscope my cancer cells look like signet rings. A thin cell wall filled with mucus and a large cell nucleus on one side. Think of the cell wall as the metal ring and the nucleus as the signet area, ready to dab the wax on that royal charter…or execution order.
It turns out that signet ring type cells are very rare. Possibly as low as 1% of bowel cancer cases are signet ring type.
And it turns out they are quite the bad boys of cancer. A significant percentage of recurrence after treatment and post diagnosis lifespans of just a few years.
Right now, as I write this, and as I also commented in ‘Chop, Chop’, I feel quite well. And yet, I have a truly awful illness and am facing a massive change to my body and with a reasonable chance that the treatment may not give me many more years.
And yet,
Highly experienced and skilled professionals are preparing to invest a huge resource of their time and our money in treating me. Why? Because I am young(ish) and fit?
When I meet the surgeon face to face next week, I will ask about what they think my prognosis really is. I can’t believe that they would invest so much in my disease-ridden carcase if they didn’t think it was worth a shot? I’m not sure what success is from their perspective? another question for next week!
And yet
In ‘Chop, Chop’ I described how my spirits had been lifted by hearing the post-surgery stories of other patients and having a conversation with a TPE patient who was going to walk from Lands End to John O’Groats (or LEJOG as we outdoor types call this endurance challenge) The walker’s route came within one mile of my house this week and I walked out onto Selworthy Beacon to meet them. A friend came with me, as I was feeling quite nervous about this meeting.
We met two very ordinary people doing an extraordinary thing and who have been through a long, painful, and stressful few years. They were candid about the huge impact on their lives; two stoma bags and a very altered lower half of the abdomen are always there. Did I find meeting them inspiring? I find it really hard to answer this and I’m not sure that inspiration is what I am looking for. Everyone with cancer will experience the illness that is specific to them, and each person will have to go through this uniquely dire situation in the best way that they can find.
And yet
I have made two new friends, people who have been where I am now. People I can talk with, get advice from, and share experience with. Yesterday, I met them on a sunny Minehead seafront as they headed off East on the next leg of their walk. By the time they get to the end of their journey, I will be a few organs lighter and, hopefully, back home. A challenging few months for them, and for me.
25 April 2024
