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Good morning to you all.

I am the partner of D, a wonderful 50 year old lady who is about to start treatment for anal cancer (stage 4)

Things have moved on since diagnosis and initial visit to Christie's about a month ago. 

Chemo radiotherapy was due to start last Tuesday, however unfortunately there is a fissure between the membrane separating the anus and vagina, and so a stoma, which was initially discussed as an option is now required. This is happening on Tue, then as soon as she has settled with it, the chemo radiotherapy will commence. 

I will keep you informed with how things go. She is currently suffering considerable pain, struggling with walking, and  and I am wishing the next few months away for her. 

I know this is not going to be easy for either of us, obviously particularly her. 

I am glad to have found this forum.  

Hopefully I can contribute through our experience, as well as asking for advice along the way.

Thank you in advance for your support.

I will do my utmost to return it where needed.

  • Hello Anthony welcome to the group but as we say it’s not a group we would have wished to be in. I am glad your partner has a supportive man to help her with her treatment and healing. Personally I don’t have experience of a stoma but you will find members on here that do. My one bit of advice would be a sitz bath if you don’t have one of those bidet’s in your bathroom. They are very good for soothing the area and healing. I had surgery before my treatment and it was a godsend and really helps when the treatment starts if the skin becomes sore and for toileting in. If your partner is having a stoma fitted she will probably not have to endure the opening of the bowels but it still can get a bit sore. Yes please let us know how she gets on and ask away any questions or even tips you found useful which may be of interest to others.

    Julie

  • Hi  ,

    Firstly I’d like to offer you a warm welcome to the Macmillan online community although I’m so sorry to hear of your partners diagnosis. 

    I understand it’s just an added worry with the stoma op & the delay of D’s treatment but we have had quite a few members through the forum over the time I’ve been here that have had stomas prior to treatment & have managed them very well & have in fact been quite grateful for them especially nearing the end of treatment & the couple of weeks afterwards as it can be extremely painful having bowel movements at that time! Here on the online community we have a specific group that offers support & advice for people requiring stomas etc., I’ve posted the link if you fancy having a look there too Ileostomy, colostomy and stoma support , you may find the information over there helpful in the coming weeks. 

    I can also understand why you’re wishing the time away. As strange as it might sound I think it’s sometimes more difficult for our loved ones watching us going through a cancer diagnosis than it is for us that have received the diagnosis. 

    Are D’s treating team offering her ongoing pain relief options? It has been mentioned here on the forum a couple of times recently that it’s advisable to try & stay ahead of the pain with whatever pain relief you’re using rather than treating it once it’s peaking. If the pain relief she is using isn’t adequate please get in touch with her treating team & stress that it’s not enough. 

    Please just ask if either of you have any questions & we’ll do our best to answer, we’re here to support you both wherever we can. 

    I know your priority will be your partner right now but please remember to look after yourself throughout all of this too, we have another group Family and friends forum that is just somewhere where you can speak with others that have a close family member or friend that’s going through cancer right now. 

    Keep us informed on how you’re both getting on. 

    Nicola 

  • Hello Anthony

    I am so sorry to hear of your partner's diagnosis.  I see you have already been made aware of other groups, all of which can help during what is a very worrying time for you both.  The diagnosis is the very worst time.  But once treatment is underway, and even though it comes with its own side effects, at least there is a general feeling that something concrete is being done.  There are a number of people on here who have a stoma and who have coped remarkably well and hopefully this will hold true for D as well.

    I agree with Nicola with regard to the pain, cancer teams are well-versed in pain relief and can prescribe some hefty drugs to help her through this period, ongoing pain is so debilitating and especially if she has reached the stage that she has difficulty walking.  So please do shout out if she needs more, that sort of pain level should be treated.

    I am wishing her all the best in her treatment, and of course you too.  Please come back and let us know how she is.

    Irene xx

  • my advice would be, stay focused, stay positive, be determined. Ask questions and challenge the answers your not happy. 
    treatment is tough but she will get through it. Just be prepared. 
    mad for the stoma. First couple weeks post surgery are hard, but if she hasn’t had problems with bowels then stick to whatever diet she is used to. Your wife’s situation sounds very similar to mine. I also had a stoma for this reason. Mine was an emergency after a bleed. 
    it takes time to get used to but it soon becomes second nature. 

    Best of luck 

    kerrie

  • Good afternoon, I just wanted to give you an update on our current circumstances, and also to thank all of you who replied. I really appreciate it.

    I'm not very techy, and don't spend much time online, so please forgive the long gaps in correspondence.

    The stoma operation went well, and Donna has adapted to living with it quite quickly. I am personally amazed at her courage and positivity. I suppose when there are no choices available, you have to do your best to be upbeat about whatever is a necessity.

    There have been a few teething problems with hole size, leakage, and sore skin, but as she gets used to it, it is becoming easier.

    Chemo radiotherapy begins next Monday. 

    Both nervous about it, but also wanting to get on with it.

    Donna has opted into a trial, whereby she will receive a higher dose of radiotherapy than normal. 

    I am nervous about it, she is adamant that trials are a necessity.

    I just wish that she could have taken part without the knowledge of the level being received.

    Anyway, thanks for listening to my thoughts.

  • Hi Anthony

    I am sorry that D and yourself are in this situation. I just wanted to say that I am also taking part in the trial so if you have any questions please don’t hesitate to ask. 
    Best Wishes 

  • Anthony

    I am so pleased Donna is doing well and completely understand the nervousness around treatment.  There are lots of threads on here that would help you, you can just click through the posts and there is a mine of information.  Hopefully she won't have the bowel problems that quite a few of us suffered and I would say the next two things to be aware of is very tender sore skin at the end of treatment and fatigue.  It is good that she has your support, the treatment is intensive and continues for a couple of weeks after it ends, and then most people pick up.

    Wishing her (and you) the very best in the next few weeks, and anything at all we can help with, we are here.

    Irene xx

  • Hi  ,

    Thank you for the update, don’t worry about not doing it earlier both yourself & Donna have a lot to deal with right now. 

    I’m pleased that on the whole the stoma op & recovery has gone well.

    I too entered into a clinical trial for my chemoradiotherapy. I felt the way Donna does in the fact that these trials will go on to improve treatment options in the future & they are important. 

    We’re here to offer support to you both wherever we can, you know where we are. 

    Nicola 

  • Hi Anthony, thanks for getting back to us! I'm so glad that the stoma went well and that Donna's handling things like a champion. Come here and share your situation any time! I'll be thinking of you both on Monday.

    Suz