New here!

Hi there MagMoo & welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

Unfortunately the path you’ve travelled to your diagnosis isn’t uncommon! I’ve literally lost count of the amount of members that have come through the forum since I’ve been here that have been diagnosed with & treated for haemorrhoids for sometimes a long time before being diagnosed with anal cancer. 

Your treatment is imminent so make sure your treating team know that the pain relief you’re receiving at the moment isn’t adequate. It’s dependant on what your pain is related to eg., size/position of your tumour or if it’s ulcerated etc., but you may find that once your radiotherapy starts you may get some relief as some members here have reported feeling shrinkage of their tumour even within the first few sessions. It’s been discussed here a couple of times recently how Dr’s seem to advise trying to stay ahead of your pain opposed to trying to treat it at its worst. 

I was diagnosed pretty early stages so didn’t have that much pain or discomfort prior to surgery/treatment but after I had my initial surgery & at later stages of treatment I was at my most comfortable in a warm Epsom salt bath, if you don’t fancy laying in the bath the whole time some members have added the salts to a sitz bath & used this in the same way. 

Please just ask if you have any questions at all no matter how personal it might feel we’re used to it & I can guarantee it’s been asked before. We’ve a ton of experience of this diagnosis & treatment between us & we’re here to support you however we can.

Nicola 

Hi Mag,

So sorry you're stuck with this miserable cancer, but so glad you've found this wonderful forum to help get you through it. Sounds like your team is on the ball and making it happen fast, just as it should be.

Do you have a Sitz bath or bidet? They will be your best friends through this process. Hit your nurses up for pain relieving creams and ointments. Rest all you can, and assemble your team to help you through the treatment, driving you, providing meals, walking the dog, whatever needs to be done. 

Hit us up with any questions you have. We'll support you through this!

Hugs

Suz

Thank you. No I don’t have a site bath but will get one asap. My ex husband had moved me into his to look after me as I’ve not been able to sit or drive since mid January! X

Hello MagMoo

Welcome to the forum although  I am sure that this is a place you would rather not be.   However, it can be a great relief talking to others who are going through the same, or have been through it and have stayed around to help others in the same situation.  I am sorry that you are suffering such pain, as Nicola says keep the team treating you fully informed so they can adjust the dosage of your meds accordingly.  The cancer units are used to dealing with pain relief so please don't suffer.  Hopefully when your treatment starts you may get some relief and although it can be a bit brutal at the end it is doable and we have all sorts of coping strategies to help you get through this time.

You can talk about anything at all on here, we can and do all the time!  The sitz bath was an absolute essential for me as I had quite bad sores at the end of treatment and used it filled with luke-warm water for bowel movements, much less painful under water and easily cleaned and disinfected.  If you do get sores (and not everyone is badly affected) there are also lots of creams and lotions than help healing.  Just be guided by the radiographer what you can use on the area during actual treatment.

Please come back and let us know how you are getting on, I am thinking of you.

Irene xx

Hi there. I too was diagnosed with anal squamous cell carcinoma in January 2023.

Had chemotherapy & 28rounds of radiotherapy Feb/March only to find out recently that my body has rejected the treatment. Lost my hair, burns to the skin…all for nothing!

I am now facing APR surgery soon where I will have my complete rectum, anus and sigmoid colon removed before a permanent colostomy & stoma is created. My only hope for survival but I am terrified.

S x

Hi Shalaway , 

Welcome to the Macmillan online community but I’m so sorry you’ve had the need to find us.

I’m really sorry to hear the chemoradiotherapy was unsuccessful & you’re now facing the APR surgery. Do you have a date scheduled for your surgery? 

We’ve a few members that have stayed active in the group that have had APR surgery & are back out their living their lives & 2 members that have had more recent surgery so are earlier on in their recovery. If you use the search bar at the top of the group page & just pop in ‘APR’ you should be able to read other posts with content concerning the surgery (apparently there’s quite a few), hopefully you’ll be able to connect with others that are a little further down the line & that may take a little bit of the fear out of what’s to come. 

Please feel free to ask questions here, nothing is too personal, we’re an open minded bunch that have all been touched by this awful disease. 

Thinking of you. 

Nicola 

Hi Shalaway 

I’m sorry to see your treatment wasn’t successful and you’re now facing this surgery. I haven’t had it, but I have had my rectum removed and have a permanent colostomy after different major surgery, so I have some related experience. Fear is completely normal and justified when facing something like this. 

I just wanted to add to Nicola’s post that we do have a dedicated stoma support group within the community where you can get lots of encouragement, tips and advice from those of us living with stomas. You could join this group and ask any questions you have-no question is a silly question when you’re facing the unknown, and nothing is TMI! 

Many people in the bowel cancer group have also had the APR surgery and share their experiences there, so that’s another source for information for you. I hope you will find there is a lot of support in the community for you going through this and beyond surgery.

Sarah xx

Thank you x

Thank you, I think it’s yourself that has put me in touch with a lovely lady who has recently had the surgery. 
Any support is valuable and very much welcome x

Hello Shalaway

I am so very sorry that the treatment wasn't effective in eradicating the cancer, in your shoes I would be feeling very aggrieved too, it is a brutal course to endure without any positive result.

I am pleased that Sarah has answered you, she is a mine of information and a great support to others facing this surgery.  There are others here on the forum too, and I hope that they will pick up your post and be able to reassure you that life does carry on after extensive surgery.

I am thinking of you and please remember we are always here to offer support should you need it, or indeed just to rail against the unfairness of it all!  We have all done it at one time or another.

Sending a big hug

Irene xx