New to the group. Worried the pain. Sorry the post is so long.

Hello, sorry you find yourself here and the diagnosis has taken so long. 

I too was mis diagnosed for quite a while as I had pre existing colitis so doctors said bleeding was just a flare up. Once they eventually investigated I had T4 anal carcinoma. 

I had 5.5 weeks of chemoradiotherapy. I was given a temporary stoma op before treatment which I think was my surgeons personal choice and it was a godsend during treatment. 

I tolerated the treatment well until maybe week 3/4..... what actually happens is you are burnt from front to back and inside and out. 

I used longtec and shorter for pain and was given a morphine based gel to apply outside on wounds. It was very challenging, couldn’t sit, just lay on my side trying to get air on that area to heal. After treatment ended the pain got a lot worse as it is still working on you. 

It is not an easy journey by any means however the body and our brains are incredible things. As a survival method I have a vague memory of my worst days but seems a small price to pay as I was given great results in December that my tumour has gone. 

Now facing 6 month scans keeping fingers crossed for reversal stoma op. Been back at work since start of year feeling good!!!! I’m 52 years young! 

Good luck on your journey, having great support around you is so important and you need to be selfish, people will understand, you will have days you want to lock yourself away so do it!!!! 

Sending strength and hugs. You are stronger than you think! Xxxxx Lorna 

Hi, 

Poor you, you’ve had a really bumpy road to diagnosis haven’t you? Sounds a bit like you’ve been passed around a bit too! Pretty much like yourself prior to this I was a ‘healthy’ 52 year old. When I had my diagnosis last February I was told because our diagnosis isn’t very common there are only certain teams of oncologists that deal with the treatment regimes etc., I was lucky enough to have one of these teams at a hospital local to me. I was lucky & diagnosed, scanned & treatment plan in place within just a few weeks. I also know that many people on this forum, like yourself, have been misdiagnosed by their GP’s as having haemorrhoids!… It’s good that things seem to be moving in the right direction for you now though & the start of treatment is on the horizon. As far as pain during treatment is concerned I can’t comment on tumour pain as mine was removed surgically prior to receiving chemo-radiotherapy as mop up treatment but I think any pain during treatment seems to be related more to skin reactions to the radiotherapy & usually between the team delivering your radiotherapy & your oncologist, who you should see on a weekly basis during treatment, they’ll provide you with creams, painkillers & dressings if needs be. Also make them aware if you’re having pain/discomfort as my team were brilliant they don’t want you any more uncomfortable than needs be, I suffered from radiation cystitis from around week 2 of treatment & found having a wee really painful so I kept a jug in the loo & poured luke warm water over myself when going to the loo & that helped, I also couldn’t use any shower gel/soap down there either as it was really sensitive so my radiotherapy girls suggested washing with aqueous cream which I still use now.  

This forum has been a massive help to me before, during & after treatment so please keep posting if you have any questions as I’m sure there’ll be someone here that can offer some help or advice. I’m now 9 months post treatment & life is pretty much back to normal, although I think my mindset has changed forever! & most importantly I’m disease free!! This treatment is short & sharp & in many, many cases very successful. All the very best of luck on your journey.

Nicola 

Lorna,

Thank you so much for your reply. The wound specialist did say she was trying to find the lidocaine gel with morphine, but they are having trouble finding a pharmacy that does this compound.

It is moving so fast now, I just needed a breathe to catch up and wrap my mind around everything. I do have a great support team. I really believe that a positive attitude will be my best bet moving forward. And I’m going to put down all the work stuff till I’m through all on my treatments and a little beyond. No sense adding stress to my life.

I’m hoping that you get only great news from your scans. Thank you so much for your well wishes and the information you shared.

Sunday

Nicola,

Thank you so much for contacting me back. I really appreciate the feed back. I was kind of running myself off the rails yesterday because this week went by so fast and with so much information thrown at me. 

I have calmed down some, and getting back to positive thinking. I have decided that trying to work while taking is not good for my stress so I’m going to let someone else take over. 

I’m so glad to hear that you are cancer free. I hope to have the same results. Thanks again for the information, I will be sure to talk to my doctor about the soap wash. I’m positive I will have more questions as time goes by. 

Wishing you the best, on your road to dstsying cancer free.

Sunday

Hi Sunbarn,

So sorry you have been going through such a rough time. As you can see on this site, we have all been in similar boats! Usually paddling like mad, but getting there in the end. It is a rough ride, we all acknowledge that, but the end results are usually pretty good. I was diagnosed this time last year. I now lead a very active, full life and have managed a couple of holidays. I had a severe reaction to the radiotherapy and ended up in hospital. But with the support of the staff & many lotions and potions, I got there in the end. I had the District Nurses coming every day to help me. 

I strongly recommend you buy a portable bidet from Amazon, I found great comfort in sitting with my very sore, raw bits in warm salty water.

I did write a blog about my experiences, I know it has helped some. I have a black sense of humour, so if you are of a sensitive nature, don’t read it.  blogfromuranus@blogspot.com. It might help a bit to see what is ahead.

Very best wishes, things are happening quickly for you now, the sooner you get started, the better. Hopefully this time next year you will feel as well as I do, and be cancer free. 

Pam

Thanks Pam.

I have a sitz bath ready to go. I will definitely check out your blog. I’m really glad I joined this community because I’m getting such great hints and tips. 

I have a positive attitude and a great support group. So that makes me feel like I’m ahead of the game. I will be popping back in from time to time to ask questions. 

Thank you for the encouraging words.

sunday

Thank you Lorna for your reply Post. Are you in London.  

Hi, I am in scotland actually! 

Hope you are doing better. 

Lorna xx 

So sorry to hear all of the pain and struggles you have gone through to get to where you belong.  You are on the right track now, it is painful, but bearable.  You will come through this stronger than you ever thought you could be and proud that you kicked Cancer's butt.  I have been anal cancer free for 6 years now.  Reach out to any support that is available, hold on tight and they will help you with this.  Keep coming back here through the treatment, it got me through it all.  Thinking of you and everyone else struggling with this evil, praying one day, cancer will be a thing of the past.

Hi Aislyn,

Can I just say it’s great that you’re 6 years disease free & still contributing & posting words of encouragement on here. For those of us that are recently through the other side of treatment (I’m 9 months post treatment & at present disease free) & those just starting out on this damn journey it’s wonderful to hear from someone so much further down the road. This forum has held a wealth of information for me the whole way through from diagnosis til now.

Nicola x