Just finished 5 days of radiotherapy on Tilly, my tumour.
Luckily there has been no skin reactions.
There were some quite severe stomach cramps and a day of diarrhoea after the 3rd session, luckily I had the weekend to endure this.
Just finished the last 2 sessions
My stomach now feels heavy and painful, and sitting feels like I have a pingpong ball up my bum, so not very comfy.
Finding walking around the house and upstairs helps relieve the pains, but then a pain in the stomach means I need to sit down again.
I might suffer from cramping and diarrhoea for 10 days after Radiotherapy then things should start calming down.
Have to say once the side effects had calmed down after day three of treatment I felt so pleased to have had them, had to mean the radiotherapy was working, and if I felt rough then it had to mean Tilly was feeling rougher. She has certainly been complaining enough.
The only thing I can't seem to deal with is the word Palliative, as in Palliative radiotherapy for the rectum.
I'm trying to stay strong and positive, which to the most part I'm managing, until I hear or read Palliative, then it knocks me for six. I was a senior carer in a residential home giving Palliative care to our users, so I know exactly what it means and the outcome.
The one question I want to ask but am way to scared to ask is how long!
Any way I start chemo in 3 weeks, intravenous and tablets for a 12 week course. Thankfully they are sending a letter out explaining it all, because at the review I heard what she was saying but didn't understand or remember anything.
The doctor said after 6 - 9 months after the course of chemo I would have a scan to see how much or how quickly the cancer was growing back.
One question I want to know how many courses of chemo can a person have, and when the cancer starts getting accustomed to this course, do they try different types of chemo.
Can any one help with this question.
Millyfaz
Hi there Millyfaz,
Firstly I’d like to welcome you to the Macmillan online community although I’m so sorry you’ve had the need to find us.
Pelvic radiotherapy can cause a lot of different symptoms, some more common than others. Bowel disturbances & diarrhoea is one of the most common & I see you been warned to possibly expect this. Another side effect & the big one for me was fatigue, I felt totally exhausted regularly. It also causes a lot of inflammation so that may explain some of your other symptoms at the moment but I would always advise putting a call in to your treating team just to double check.
I can sympathise with your fear around hearing the word palliative, I think until we face it ourselves that word presents as something associated with end of life care which I now understand following many conversations on the online community is a totally different thing! Having worked in the care sector you’ll have offered both of these I’m sure. Palliative care has a much wider meaning these days & amongst other things involves pain management for many people not only those unfortunate enough to have a terminal diagnosis.
Can I ask what was your diagnosis if you don’t mind sharing? I only ask as I haven’t come across anyone on the anal cancer group that has had this treatment regime, that isn’t to say they’re not out there though as not everyone posts some get everything they need from reading other posts on the forum. If your cancer is rectal rather than anal it may be worth you also posting your question to the Bowel (colon and rectal) cancer forum as someone there may have been offered the exact same or similar treatment regime & could offer some words of wisdom. As you’re probably already aware the treatments for rectal & anal cancers are quite different regimes.
I hope you’re feeling more comfortable really soon & that someone, either here or on the other forum can offer you some answers to your question.
Nicola
Hi again Millyfaz,
I’m so sorry that you’re having to go through this.
Unfortunately here on the anal cancer forum it’s too common that people are mistakenly diagnosed with haemorrhoids & when they are finally biopsied & given a cancer diagnosis they are later staged than if the investigations been more thoroughly in the first place! There’s a couple of us on here that have expressed our concerns about late diagnosis’s to our oncologists, mine said that the symptoms of anal cancer are very similar to many other conditions including piles & it can be pretty difficult to diagnose, if ever I get to see my GP face to face again opposed to telephone appointments because of the pandemic I will be airing my concerns there also.
We do have a couple of members here that have had spread to liver & lungs from a primary diagnosis of anal cancer & I know that this does radically change the treatment plan.
Did you post your question on the Bowel (colon and rectal) cancer forum? It’d be helpful for you get a response from someone that has been through or is going through something similar as it’s always good to have someone to bounce off & chat to that’s in a similar situation to yourself, you don’t feel quite so alone.
Please feel free to keep posting here too we have many lovely supportive members here.
Nicola
