First day today

So today was my first treatment day. It went well, more at the end.

I can’t remember everything that I have shared on here so here is a probably unnecessary update. Please bear with me if I am repeating myself (now I can officially blame it on Chemo Brain). Feel free to skip to the end if you just want to read about my first day of treatment.

Up to now:

I have waited almost two years for a diagnosis. Is this even possible, can one live with anal cancer for two years and still come out the other side with treatable cancer?

I saw five or more specialists and numerous GPs in that time.

The closest I got to a diagnosis was a GP who said I had a mass and a consultant who told me I had an anal polyp on the anus.

When I was operated on to remove the polyp I was told afterwards they could not remove it and instead had taken a biopsy.

Naively or ignorantly I thought a biopsy was a small sample. I bled a lot after the surgery and I was extremely uncomfortable. I was given Paracetamol and Codeine and after a visit to my GP after an excruciatingly painful poo, cream for an anal fissure. I felt like a fraud and ridiculous.

When I saw the surgeon again he told me I had anal cancer and apart from being left believing I might be untreatable everything else kicked into place. The service I have had subsequently is just incredible.

But here’s the issue. It turns out the surgeon took a 4cm lesion /tumour. I did not know this. This is why I bled so much and why I was in so much pain when I went to the toilet. If I had known this I could have looked after myself better and not felt like such a fraud.

I don’t understand why he didn’t tell me, I had given consent to having anything necessary done, and, apparently he did an excellent job. He has taken pretty much everything bad leaving only a ‘residue’ according to the consultant (residue doesn’t sound very nice maybe they could come up with a different more pleasantly sounding term?).

My first treatment day:

My take aways are;

Everyone, and I mean everyone I have come into contact with have been nothing other than kind, compassionate, empathetic, caring and professional (I should perhaps mention here the one consultant who attempted my first sigmoidoscopy who was rude, swore at me and hurt me by being rough while inserting what felt like a thumb into my anus. Somehow I often forget to mention him but he was a one off).

Taking in so much information from Chemo Nurses to Radiographers is really challenging so having all the written information is really helpful. The MacMillan Anal Cancer booklet is brilliant and my main go to for information next to this Forum.

Having to keep my right hand in very hot water for what felt like forever was very uncomfortable and strangely anxiety provoking, maybe it would have helped if they had told me why I was doing this. I Guess it was meant to open my veins, if it was it worked but inserting the cannula still hurt.

Strangely the saline hurt while going in where-as the deadly looking purple Mitomycin did not. The heated pillow I had to rest my arm on was uncomfortable but I would love one under my pillow at home.

Looking around the room I realised that in the scheme of things I am lucky. I do not have to go to that room again. Other people there are not so lucky. That said, I still have cancer and I am allowed to feel peeved.

Radiotherapy was a pushover, inserting my insulin needle into the area afterwards was not so good. Mental note, DO NOT INJECT AN INSULIN NEEDLE INTO THE RADIOTHERAPY TREATMENT AREA, IT HURTS, EVEN AFTER THE FIRST TREATMENT!!

Taking about being lucky or not? Just be ready to feel anxious, no matter how brave you think you are, or how difficult you think it might be for other people.

I think being told over and over again about the possible side effects time is important but sometimes for me it just felt too much knowledge and occasionally overwhelming. So, BE KIND TO YOURSELF, you are not weak, you are not a coward or being ridiculous. Be honest and tell them when you are feeling anxious, or think you might be (imagining) an allergic reaction. They are there to care for you and they know what to expect. My Canula hurt during saline infusion, they put my mind at rest, simple as that.

Anyway I am on the way to writing a book, sorry.

I will stop now by concluding, I survived day one. I have now done the anxiety about my temperature, stomach pains, diarrhoea, bleeding and so far none of those have been real. But, THIS IS NOT A TIME TO WORRY ABOUT CRYING WOLF never ever hold back, no matter how small or even ridiculous you might feel. If you worry, if you are frightened, anxious or just feeling you are alone in all this, REACH OUT to anyone and everyone.

 Day two tomorrow. Sleep tight.