Now what?

I have started several posts already, and given up. It feels like there are so few people with this type of cancer that no one will see this, or even have the same issues.

None of the stuff I need to talk about is ‘socially acceptable’ as it includes ‘rude’ words.

I feel changed by what I’ve been through. I am changed. I am now pretty much friends with my husband- I can’t imagine having sex when I’ve had that “mass” even though it is now “unmeasurable”. I’ve been so damaged by radiotherapy that I pretty much spent six weeks in the bathroom, and am now on enough anti-diarrhoea medication to kill a horse. I just recently started with my dilation kit, and the whole idea fills me with revulsion.

I know everyone has struggled this year, but I don’t think I’ve really acknowledged any of this. The chemo stopped by the Covid crisis. The six weeks of radiotherapy with a face mask on. Never mind the treatment itself. When I finished radio, they said I’d feel better in a couple of weeks. My friend said more like 18 months. I think I believe her.

I’m very, very grateful for the treatment I’ve had. It was given with kindness and compassion, and it seems to have worked. They won’t say I’m cured, because I guess they don’t do that. I know I should be celebrating, but truth be told, I don’t dare! Suppose it comes back? 

I have seen the Macmillan psychologist, and she pronounced me fine now. I don’t feel it. I don’t feel like myself, but I’m not crying or anything (I can’t, I take too much Sertraline). I think she’s right, and I need to work it out for myself. I don’t want to dwell on it, but I want to feel better, more like me. But I don’t know who that is. If I’m a woman (I’m 58) who isn’t going to have a full relationship with my husband, is that fair? Or will it get better in time, and I’ll feel more human? 

  • Hi I had recurrent womb cancer at the top of my vagina 17 months ago and I had salvage brachytherapy.  I began to have bowel problems, bloating and bad wind. I had mucas discharge and bleeding from my rectum and urgency.  I was referred for a coloscopy and was diagnosed with radiation proctitis. I've had treatment and things are better and manageable.  Please go to your doctors or ring up your CN nurse and ask to be referred.  I use my dialator I still have a little spot of blood on the tip but this is usual so I'm managing this without worrying too much.  Relations with hubby is still painful but it is getting better.  I sometimes go on the cervical group chat and a lot of ladies have our kind of issues you may find additional support there. Please go and seek medical help for the radiation effects.  Take care and hugs Dawn

  • Hi I'm at the early stages of treatment for VC I am sorry to hear the upset and distress you are going through I do it know how I will feel at the end of the treatment but I know it has changed things. I am 54 and in a very loving relationship I know things won't go back to the way before but. I will try and stay as positive as I can as the alternative was unthinkable. I hope things improve for you take care. 

  • You will get stronger about it all. It just takes time to get over the whole experience. My husband supported me and you can have sex in other ways. I had a vaginectomy. I am thankful just to be alive 2 years on.

  • Hi, Louisemaroc 

    Can you tell me more about vaginectomy? Did you get removed entire vagina? How long did it take for recovery? I also had VC in 2014, it was stage 1, had chemo, radiation and branch therapy. I had multiple surgeries to remove VAIN3 before cancer treatment. And now HPV is spreading to my vulva and lower vagina area, and had 5 surgeries. Now my vagina is all closed and doctor can not detect if I have any pre cancer cells in my vagina. So if you could tell me more, appreciate it. 

  • Hello LadyKatkin I am so sorry to hear about how you are feeling and about your experiences. I wondered if you had heard of the charity The Eve Appeal which does a lot of work to try to break the stigma and taboo surrounding gynae cancers. They have a lovely nurse specialist who you can arrange to talk to if you feel the need of support. It might be worth reaching out to them. Sending you big hugs A x

  • Lady Katkin, I feel so sad for you. I finished treatment 3months ago, radiation, chemo + brachytherapy. I definitely have bowel problems, which seem to be improving very slowly. As for sex + dialators, it sucks the big one right now. If your husband is your friend, I'm hoping he will be patient + help work thru the pain. Someone on here said to use lidocaine ointment, I'm going to try! We've attempted sex 2times now, yesterday, and it definitely is not fun for me, but I feel like I have to put the effort in. I'm supposed to be using this estrogen cream also, which they say helps w/elasticity of vag. This type of cancer is rare, so I'm learning, not many people to discuss with. And if people think speaking about this is crude or unacceptable, screw them! This is your life + you can talk about anything. My friends didn't want to hear about my poo problems, but tough, that's a huge issue I'm dealing with. I just had another friend have his cancer return + side effects of new drugs is diarrhea. So I said, welcome to the poop in your pants club! Happens to just about everybody at some point. And our bodies have been put thru the ringer! That was the main reason I was looking for a forum, see what side effects others were dealing with. Me, sex + poo

    I will say mindset makes a huge difference. I know it's  hard to be positive, but you must do yourself the favor of trying to have a better outlook. A lot sucks, but we're alive, which I am grateful for.  Just fyi, I'm 51. I hope some of these messages help. Please feel free to reach out. I've dealt with medical issues all my life, kidneys failed when I was 8yrs old + I've had 2successful transplants. But let me tell you, after being on meds all your life, you do have many other medical issues. Positive attitude has gotten me thru life.

    Big hugs to you

  • Hi everybody I was diagnosed with vag cancer Dec 2012.   I was 55.   I had 6 chemo, 35 radiotherapy, 2 brachytherapy and half my vagina removed. Thank goodness for the NHS and all the wonderful folks in it. The treatment, care, advice and understanding I have received on my cancer journey has been amazing!  Ladies you are all fantastic you are strong and determined to keep on going, life is definitely worth fighting for.  My journey has had its share of complications, however after each problem and days of tantrums from myself I always resolved to keep on truckin no matter what!  
    From August 2015 I had difficulties  peeing and after another admission to hospital I had to be rushed to theatre on 24/12/15 with sepsis in my kidneys.  Awoke to find I had double nephroscomy tubes and urine bags strapped to each leg permanently.  Merry Christmas to me lol.   Apparently my ureters were fried due to brachytherapy treatment.   Next problem bleeding from rectum resulting in constant blood and iron transfusions.  Several sessions of laser treatment helped to curb this problem. Next problem twisted and burnt bowel resulting in a blockage which nearly killed me. Fixed with you guessed right a permanent Colostomy bag.   There is more of me outside the bed than in it.  All I need is my teeth in a tin, hearing aids, and a wooden leg lol.  As for sex well it is zero.  We have other ways of showing our love for each other.  We have been married 45 years and he is my rock, a keeper and we love each other so much. The dilators didn’t work for me due to my surgery and also because my vagina had fused.  I have other problems I have a frozen pelvis and since my colostomy bag operation I leak urine and blood from the vagina.  But I still get up every day and Thank God for another day to fight and keep going. Not everyone will get complications, if they do they could be minor or like mine major. But my mantra is one day at a time. If I can be of help to anyone feel free to message me or private chat me.  I wish you all blessings on your journeys. You are all warriors.  Much love and hugs from Carol xx

  • Hi carol 

    I have VC cancer I am 53 and I am hopefully having surgery to remove the cancer my vagina and bowel. Super scary. 
    your an inspiration x

  • Hi Debbie,

    Its a scary journey you are going through, there will be highs and lows, but the only advice I can give you is Ask, Ask, Ask questions, know what you are going to go through, get explanations from the cancer team who will be looking after you.  Some people don’t want to know but I was able to mentally prepare myself for my treatment. I felt better knowing what to expect, it took away some of my fear.  You are only a few years younger than me when I as diagnosed. I had a career I managed a Centre for people who had dementia and I loved it!  But Cancer changed me, I was no longer the person I was before, I couldn’t concentrate, I tired easily and I was frightened of it coming back, I wanted to live in a little bubble.  But I persevered, became a Christian and I adjusted my life to suit my problems.  I’m extremely happy now, I can’t do as much as I used to because of all my designer bags lol.  If you want to message me to become your friend just send me a friend request.  You are doing great because you want to talk about your cancer, many people don’t they want to forget it is in their bodies!  I hope you have someone at home to support you and look after you!   As I said you are a warrior you are going on a journey and you are going to fight to get through every milestone in order to get better. If you want I’ll be on the side lines cheering you on.  Take Care and God Bless always xxxxxx

  • HI Ladykatkin

    I had vaginal cancer at 48, became single at 49, told my vagina was completely defunct at 50...I decided that my vagina does not define who i am.   It's a trade off, my son was 6 when I was diagnosed, he is now nearly 9, I'd rather have a non working vagina and see my little boy grow up.  I won't say I didn't cry when I was told, but I decided to seek out the positives and live my life.

    Having said all that, I suffered really badly and my gyea surgeon said it's the worst reaction to treatment he had seen, my labia and vaginal entrance became ulcerated 14 months after my last treatment, it's all healing now after using a steroid cream, before it all started to become ulcerated i'd been able to use #3 dilator, i had, had sex with my sons father (slightly painful and not what it used to be)..just use the dilators and don't put pressure on yourself...take your time,.

    Just try to stay positive, cancer takes so much, don't let it steel your happiness

    Hugs - Shelley