Treatment plan in place, nerves kicked fully in!

Hi. My name is jen 

This is my first time posting on here. Always just looked at other people's post.

I was diagnosed anal cancer in March 2018 and I can thankfully say I was given the best news of no evidence in december 2018 after chemo through a picc line and 6 weeks of radiotherapy. I also had to have an illostomy bag fitted which I found very difficult to get my head around but I am just starting to feel strong again and less anxious about my health.

I hear what your saying about "its embarrassing" having anal cancer but it got explained to me that it's just another part of your body like the rest.

I wish you all the best with your treatment.

I know what you mean about anal! I say bowel cancer.

I found the first day frightening because I didn’t know what to expect but actually it was OK.

Drink plenty of water and wear warm layers to prepare for IV chemo, it’s easy for them to get the IV line in if you’re warm and well hydrated. Other than that it’s just boring, with lots of giving your name and date of birth to everyone and sitting around.
The first few weeks of treatment are fine but then the tiredness kicks in. You’re likely to get sore in the pants area too, so have a plan in place to deal with that.

The most useful thing I bought was a plastic jug to wash with when I went to the loo and a pile of cotton cloths to dry myself with. They went in the wash every day. Much less abrasive than paper or wipes.

i still cooked and shopped until the last week of treatment, then I had 2 weeks mostly at home, mostly asleep.

my eldest son is Autistic, well Aspergers, so I know the importance of routine. He likes to know what the plan is for external things happening to him and then can work out how he fits in with that. But then the biggest thing I’ve learned about Autism is that everyone is different, with a loose collection of common traits.

How do you feel about people touching you? My son isn’t keen. When you have radiotherapy they get you to lie down then shift you into position, in a few small quick movements. I think if you know what to expect you’ll be fine. Maybe ask them to explain what they’re going to do as they go along?

It’s not your fault you have a cancer with an embarrassing name. It’s rare and it just happens to some people. Be kind to yourself.

Best wishes,

Hi Midlands20,

It’s good to hear from you but please don’t apologise for not being present on here we’re here whenever you need us. 

It’s good that you have definite dates now & I figure you’ve broken up from work for the holidays? I can understand your concerns about your class but try not to worry I’m sure they’ll be well looked after in your absence, would it be an option for you to pop in & see them maybe break time or lunchtime at school during your treatment if you’re feeling up to it so you don’t lose contact completely & the children can see that you’re still around? I was well enough throughout my treatment to do most things although working was a different matter as apart from the disruption of the hospital visits daily as treatment went on the fatigue kicked in & I found myself napping most days at some point! The 2 weeks following my last radiotherapy session were when my skin reaction peaked & I definitely couldn’t of worked then but 3-4 weeks after that point I was back to work part-time. 

The chemo infusion really is ok. I was seated in a big comfy chair & hooked up to a saline IV (in my wrist) for a while just to flush out the vein where the chemo would go in, maybe it’d be an idea to take something to read, I was given some anti-sickness meds, then the nurse arrived with  a syringe with a couple of inches of medication in, it literally only took her a couple of minutes to deliver it into the cannula that the saline had been going through & that was it. I was asked to wait a little while to make sure there wasn’t a reaction & then I went off for my first radiotherapy session. It was then that it dawned on me that there was no going back!  You’ll be given anti-sickness tablets to take each day but I soon realised I didn’t need them with the oral chemo & my oncologist said it’s only usually the IV chemo that causes tummy issues, the tablet form rarely does.

Although there are common side effects to this treatment each of us react differently at different stages but by the nature of the beast we all enter into this expecting the absolute worst! So please don’t think your reaction & fears are out of the ordinary. You’ll begin to feel so much better once you have day 1 out of the way & start ticking off those appointments. 

Don’t view your posts as rants you’re just sharing your concerns as we all have & that’s one of the great things about the online community is that you don’t have to feel alone & there’s always someone here to listen or offer advice.  

I’d also like to wish you a Happy Christmas & believe January will the beginning of better times for you. 

Nicola

I think everyone has a meltdown when it comes to the treatment.  We all imagine we are not going to able to cope. 

Remember these two facts... neither Chemo or  Radiotherapy hurt.

Chemo will make you go to the loo more often but you will be given Lopramide to counter that.

Radio side effects build up over time, but actually lying in the machine is quite relaxing once you over the 1st experience and you dont feel any thing at all when it's on. 

It's quite likely that you won't get sore until after the 4th week.

Then there are tables they can give you to counter that.

Everyone is slightly different but I was shopping in my final week of treatment. 

It's far more doable than you think.

Try to remember all these things,  they could help you sleep.  Remember also that this treatment is curing you.  It's a good thing. A few decades ago this would not be possible.  We are all very lucky this treatment exists. 

The hospital should give you all the advice and medicines you will need. You can come on here with any worries at any time also of course. 

Ian

Hi Midlands20

Nice to hear from you. I’m glad you’ve got things organised with school.

I understand about your embarrassment. I felt the same in the beginning, I couldn’t bring myself to say the words, I'd say things like I have a tumor in my bottom. Some members of my family couldn’t say the words either, calling my disease bowel cancer instead. People are uncomfortable talking about bottoms, poo etc its ridiculous really as its just another part of the body and you can get cancer anywhere.

As I progressed through the experience, my embarrassment faded and I was happy to say anal cancer and see peoples reactions. Usually a screwed up face. I moved from feeling embarrassed to feeling a need to raise awareness about this cancer.

Its up to you what you feel comfortable telling people. Anal cancer is a rare skin cancer, nothing to do with bowel cancer. So you could say you have skin cancer, which is the truth but easier to say.

I’m sorry you're in pain, I hope your hospital have given you some pain relief. I was in pain in the lead up to my treatment as I had a biopsy and a polyp removed. Sitting was painful and walking also became uncomfortable. My hospital gave me a cushion that really helped. I’ve attached the link to one on Amazon if you think it might be useful for you:

cushionhttps://www.amazon.co.uk/NRS-Boneyparts-Pressure-Comfort-Washable/dp/B00FRGJA1C/ref=sr_1_1?keywords=boneyparts+cushion&qid=1577050800&smid=A3P5ROKL5A1OLE&sr=8-1

In terms of routine, this treatment with provide you with a routine. Every day you will have a purpose, to get to and from hospital for your radio. You will take chemo tablets at the same times every day and you will find your only little routines for sleep, eating and self care.

Just try to take one day at a time.

Sarah x

Hi Midlands20

And all other people that have comment. I'm having problems with my bowel

Lately. Could you tell me your symptoms. I no everyone's different.

I'm just worried that all. My doctor never take me serious has I have anxiety. I dont complain alot to him

But I would like to know your symptoms, I lost dark blood the other day keep losing mucus. Last week I had thrown up cause if I dont take tablets to make me go. I dont go. The mucus was strange I took a pic and doctor just said was mucus.  Family/ friends I've shown said it not right 

Hope you be ok Midlands20. Everything will be ok. Sorry I get anxious writing comments scared I say the wrong thing.

Before and during treatment my toilet pan looked like a slaughterhouse.  I had a lot of mucus, thick and yellow,  reminded me of the fat in a tin of pork.

Terrifying scenes but all very common. 

It all stopped during the treatment though. In don't get anything like that now. 

By all means check it with the oncologist but don't worry overly  it's very common.

Ian

I had the same just long think mucus or it leaking out. I showed my doctor a picture not taking me serious. Here a picture. See what you think I just want answer. But not getting any. I know your not a doctor just want some advice