GETTING IN TOUCH AFTER A LONG ABSENCE

  • 9 replies
  • 40 subscribers
  • 440 views

Hello everybody, Beth (Jester) here after a long absence. I felt in a lot of ways I didn't want to post because my experience seems so awful I didn't want to scare people just starting their treatment.

I finished chemo/radio on 2nd January 2023 and, apart from a few odd weeks/days, things simply haven't improved. I am still in pain, more from my "ladies bits" which are still sore and raw feeling and of course the anus itself still burns, aches, stings and generally feels uncomfortable. I can still not sit  for any length of time, even with my donut cushion and spend many hours still lying on the sofa. I do walk my dogs every day because walking is ok. Sitting is my great problem.

I have gone back to choir, which was my main goal because my choir is singing the Mozart Requiem - one of my favourite choral works. The MD has been wonderful as she had breast cancer and knows what I've been through. However, to be in such pain after so long is so debilitating and I'm unable to sit right through a choir practice (2 hours) and I feel so disruptive when I keep getting up and moving about. The members round me are lovely and all understand, but it makes me feel awkward and calling attention to myself - I'm sure you all know the feeling. Incidentally, I tell people I've had anal cancer and make no bones about it because of my sitting difficulties. 

Is there anyone else in this group with the same pain after 15 months post treatment. I know Irene you've suffered terribly and are such a stalwart in this group. I take 5mg slow release morphine (MST)  twice a day and Laxido twice a day and my GP has now started me om Amitriptilyne, but perhaps I need a higher dose of MST - any help and advice will be so welcome. 

My love and regards to all of you in this group, we're all fighting a terrible and, it seems, never-ending battle. B x

  • I use big size pilates ball to sit at the dinning table, so, i actually not sit on the ball, but always roll, the space is secured by a wall behind the back/ball. l feel comfortable during such sitting, and even have two foot massagers under the table (percussion and shiatsu) to do foot massage while dining.

    Hope it helps. 

    Sincerely,

    Alex from Israel

  • Hi Jester, yes I remember you on here and really sorry to hear that you are still experiencing this pain. So you are coming up approximately 15 months post treatment and to be in this pain must be disruptive in every day life. The problem with our private parts, is they are so full of nerve endings and when you are feeling pain there it’s really hard to ignore. What has your specialist team advised if anything? Has the anal skin been badly affected by the radiation. I am wondering if you would benefit from having hyperbaric oxygen treatment. We are lucky to have one of these facilities in my town that also offer it to cancer patients and post cancer patients. I believe some nhs hospitals do this too. I couldn’t have it because I have problems with my ears and air pressure and my doctor worried I would perforate them as this has happened several times over the years though not from the oxygen chamber. I would be tempted to find why you are suffering so long rather than relying on medication constantly. Pain relief has its place but sometimes it’s just a mask. There is quite a lot of literature about the benefits of the chamber and my local centre treat those with MS and have heard how they have benefitted. Please don’t feel bad coming on here to have a moan as that’s what we are here for. Those who have come out of this absolutely fine are far less likely to feel the need to come on here anyway. Try Tamanu oil or balms that’s increase healing. Healthline do a good article on the benefits of this oil. Research has been done on this oil which helps scarring. I used it during my healing by massaging around the genitalia to help keep the skin supple. I am two and a half years post treatment and suffer no pain now and feel so blessed but do have bowel issues if my diet isn’t regimented causing me to have to use the toilet several times a day. All that cleaning can make you sore. I hope you are able to find solutions to your pain and don’t give up. 
    Julie

  • Hello Beth

    I am so very sorry that you are experiencing these difficulties.  I think all of us, to one degree or another, have after effects but I must admit none of mine include sitting and I can totally understand why this is a huge problem for you. My anal canal has never returned to normal and bowel movements are never entirely comfortable.  Like you I cannot go without Laxido to keep my stools soft as I have anal stenosis.  I know that there are others on here that experience ongoing pain everywhere in the nether regions and I am hoping that one of them pick up on your post and can offer some practical help.

    I had a quick look at Amitriptilyne for pain and it can take up to six weeks to work so you might have a bit of a wait to see if it helps you.  I really hope it does.  And your choir group sound understanding, I am so happy to hear that you are back singing again!  My friend is a long-time choir member and she said it is soul-lifting to be a part.

    I am thinking of you Beth, and keeping everything crossed that the medication kicks in soon.

    Irene xx

  • Hello Julie, thank you for your helpful reply. I understand from my GP that the pain is caused by severe nerve damage, which is a difficult thing to try and treat. I have bowel issues as well, but generally manage to deal with them as it's mostly in the mornings, so I don't take the dogs out until I feel ready and I try to keep any appointments to the afternoons.

    My greatest problem is sitting, as I said, and also tiredness. I always have a sleep on the sofa in the afternoon because I don't seem to have any energy. I suppose a lot of energy is used up in dealing with the pain. I agree with you that I shouldn't be having this amount of pain so long after treatment, but when my partner asked my oncologist why I had so much pain he said he didn't know. He said it was certainly unusual, but could offer no solutions, other than medication. So I just muddle along as best I can, I do buy lots of natural balms, including ones specially created for neuropathic pain and they do help to an extent, but nothing seems to actually stop the pain, apart from Lidocaine ointment and Emla numbing cream which I bought online. The Emla is very effective, but I don't like to use it all the time. 

    I know I'd be unable to try a hyperbaric chamber because, like you, I have ear issues, and had Menieres Disease a while back.

    Anyway Julie, thank you again for your kind and helpful reply. I just hope that one day these nerves will settle down and give me some peace. B xx

  • Hello again Irene, lovely to hear from you again after my long absence. How are you getting on yourself? I knew that you had anal stenosis - has anything been done to help that? Luckily, because like you I take Laxido twice daily, I have no pain in passing stools, but do have the old haemorroids which bleed now and then. The pain is a burning, aching sensation and also my hips and back cause problems. However, I do walk every day with the dogs which I'm sure keeps me sane.

    My "ladies bits" as I call them are so tender and raw-feeling as well, so my GP has given me some Estriol cream which is 1% Estrogen, but to be honest, doesn't seem to have done much so far, but at least she tried. I just feel very debilitated and worn out with it all and as you know from my earlier posts, the medical "team" in the hospital really don't seem very interested. 

    Another factor, which I'm sure has depressed me and no doubt you and millions of others as well, is this continual and endless rain. Taking three dogs out and then all the dirty towels etc, really is wearing. I'm sure we'd all feel brighter in ourselves if we had some weeks of sunshine, but it doesn't seem to be on the cards. 

    Thank you Irene for your lovely reply and I hope you're in better shape than we last spoke. 

    Bxx

  • Hi Beth,

    Lovely to see you here again, although not for this reason. I'm so sorry that you're still in such pain. I've had my challenges and whinged about every one of them here, but I can sit and drive and get by without afternoon naps any more, so that's something I need to remember to be more grateful for.

    I quit taking gabapentin after my diagnosis, as I didn't like it (it made my vision funny), but it was the best thing for pain I've tried yet, short of the opiates during treatment and recovery.

    We need more After-Effects Clinics, dammit!

    Hugs

    Suz

  • Hi Everyone,

    I too have terrible pain when sitting for any length of time, the difference with me is that I have a Colostomy.Every few months I've passed bloody mucus, not loads but enough to finally get my team to investigate by sending me for a Flexible Sigmoidoscopy! I went yesterday but they couldn't do the procedure because the anus has completely closed because of the anal cancer! The only way it can be done is with a general anaesthetic, so I've just got to wait to hear from consultant! I'm 3 years out of treatment and thought I'd gotten over the worse but no, still some rotten surprises left waiting apparently!

    You all seem to be having a rough time, I feel so bad that you're all going through this! 

    Sending warmest wishes to you all,

    Moira x

  • Hello again Beth

    I had stretching of the anus under GA in November but the consultant did warn me that I would have to continue as the scar tissue would cause to contract again.  Unfortunately I was really unwell after the procedure with some sort of infection and then my piles were too painful to attempt using the dilator so the procedure ultimately did very little to help.  At a later appointment the really lovely consultant discussed the difference having a stoma would make to my life, and is making an appointment with the stoma nurses to talk through what this would entail on a daily basis.

    Dogs and mud!!  I had my pooch trimmed really short on Saturday, she is a cockapoo and after every walk I have to hose her down in the garden.  The commons where I live are a sea of mud which is impossible to avoid and even after she has been rinsed off she leaves a layer of fine dust all over the house.  Roll on the better weather - I can't wait!  

    I had never heard of the Emla cream and looked it up, it does sound very effective and it might be worth checking with a good pharmacist (not your GP, the pharmacist is often more knowledgeable) how often you can use it.

    But please let us know how you get on with the Amitriptilyne.

    Irene xx

  • MG Moira, what a terrible shock for you - you must be absolutely devastated. As you say, with cancer there are often rotten surprises waiting round the corner. Good luck with it all, I hope they manage your appointment sooner than later.

    Sending my love and best wishes to a fellow sufferer.

    Bxx