Hi Everyone
Thank you all for your written support over the last few months. You have helped me, and continue to do so, more than you know.
I was diagnosed with anal cancer 2 days before my 50th Birthday in July and by September I started 28 days of Pelvic Radiotherapy, along with two weeks of Mitomycin and Fluoroucil Chemotherapy thrown in for good measure.
I had a fairly smooth first 4 weeks with amazing nurses and new found friends. I seemed to get away with any side effects until week 5, when I slept for the first time in the afternoon and started to get ‘skin issues’ from the radiotherapy. It was trial and error with the creams and lotions and this felt physically like my toughest time and this continued for a few weeks. I didn’t work at all due to the fact I work on public transport (covid issues) and I’m a shift worker.
I had a meeting with my consultant at 6 weeks post treatment. It was very positive, I think.
So, here I am, 14 weeks post treatment. Apparently, I’ll have another meeting soon and then a scan at 6 months. I’m at Bristol Oncology.
This is where I need your help again please. This is my toughest time, mentally. I am anxious everyday (so not me). I think about it all the time. The more I use the toilet (this can be a lot!) the worse I get. Does this last long? Will it heal more? When will I know it’s gone? Why do you wait so long for a scan? Is it normal to wait that long, for I’d like to think, an All Clear? I can’t take the consultants ‘word for it’. How can I know for sure that’s it? There’s no more, anywhere? Is this just me, am I stupidly paranoid? It seems like it doesn’t end. I thought, treatment is done, I’m sorted, but ….
Gosh, so many questions/thoughts/worries. Sorry. I didn’t realise I was this bad until I started typing! My husband had a stroke last year and we were just coming out the other side when this happened. I think I’m just struggling to be strong now. I’ve done it for so long. It’s the not knowing.
Anyway, if you’re just starting your journey, you’ll have your ups and downs, but you’ve got this. If you’re at the end of your treatment, please tell me it gets easier?
Sorry and thanks x
Hi there Holibobs,
Firstly don’t ever feel the need to apologise for the way you’re feeling, you’ve been through a major event these last few months & if truth be told we’ve all had at least some of these concerns following diagnosis & treatment.
It’s still very early days for you yet so yes things will improve further. You say you’re going to the toilet ‘a lot’ I’m presuming you mean many times? Sometimes if this has been a side effect from your treatment it can take a while to settle as your bowel will have been severely aggravated by the radiotherapy. Have you considered keeping a food diary to see if there are triggers for this? The treatment has had an impact of sorts on my whole digestive system I think, there are definitely things I’ve identified that I can no longer eat or I have to have in moderation now. Also medication, have you tried loperamide for days when you’re on the loo a lot? Healing, you will continue to heal for a long, long time & things will gradually improve, I found externally I healed really quickly after those initial 2 weeks post treatment, internally things did take longer but that’s radiation damage for you! The radiotherapy continues doing its thing for some time following that last session & this is why there’s always somewhat of a wait until your oncologist scans you to check on the results of the treatment. You should receive a pelvic MRI & a CT scan that covers chest, abdomen & pelvis, these will be reported on by a radiographer & your surgeon/oncologist, they will thoroughly check for any residual or new disease so it’s all we can do is trust in the report they give us. Anyone that has had curative treatment for a cancer diagnosis is followed up for 5 years, after this you’re classed as ‘cured’ as incidents of recurrence are highly unlikely after this period, for our particular diagnosis it seems the norm for surveillance to be mainly based around physical examinations (DRE’s) & annual scans although this can vary from hospital to hospital sometimes even oncologist to oncologist, they all have their own way of working but it seems quite common for this to be the basis of our post treatment surveillance. My oncologist & surgeon have always both told me that physical examination is always the best way to check for any abnormalities & they’ve both made it clear it’s always fine for me to contact them if I have any issues between my appointments so please don’t hesitate to contact your nurse or your treating team if you have any specific concerns. Personally I was seen 3 monthly for the first year, then 6 monthly for my 2nd & 3rd years & now I’m on annual checks until discharge, hopefully, at 5 years (I’m 3 years 7 months post treatment now).
You’ve had a lot on your plate going through your diagnosis & treatment & also dealing with your husband’s health challenges so it’s really not surprising at all that you’re feeling a bit frazzled! Remember we’re always here if you need us.
Nicola
Hi again Holibobs,
You're more than welcome.
I definitely agree about the wait for scans & the anxiety that brings with it, it’s something we call scanxiety & it is REAL!!
NED stands for No Evidence of Disease, this is what they used to call remission but nobody seems to use that term any longer. You’re generally not told you’re cured until you’ve gone through the 5 years surveillance. Both my oncologist & surgeon assured me that with an anal cancer diagnosis though once you’ve reached that 2 year post treatment mark the chances of recurrence drops dramatically.
You’re also correct about being plunged into menopause probably not helping, I was either in menopause or peri-menopausal before treatment & getting my ovaries fried during radiotherapy saw an end to it all for me so silver linings & all that!
Please keep posting & let us know how things are going. You know where we are if you need a bit of a sounding board or anything at all, we’ll try our best to help.
Nicola
