So I started a conversation on our bloodwise ambassadors page about s$x drive during and after treatment and its been quite an interesting topic so was asked to share it here.
I have written a blog on where i am with it all right now, and would be interested to here if people feel the same or have felt the same but have managed to find a way out of it, or to be happy with it. Luckily its something that doesn’t overly concern me, but I wonder if I ought to be more concerned about it being only 32?!?!
Read this and see what you think!
Hi Emma, I have to laugh even this site will not let you print the word. I really do appreciate you actually raising such a vital topic that is sometimes just not talked about. even within relationships where it might have different priorities within the partnership. Thanks so much and by the start of your blog, definitely not with parents.
Hi Emma. This time last year I was at The Christie in Manchester at an inaugural event to support cancer patients, and to make them aware of the (fantastic) support that was available to them and their families. There were talks from myself, from a patient’s perspective, Gizem, representing Bloodwise, and my husband was also roped in, speaking from a carer’s perspective. MacMillan and other groups also gave a talk, and one of the topics was relationship/s** therapy which is available there. Unfortunately there were more organisation reps there than patients, but it was good to see that someone recognised that there could be problems.
When I was admitted to the haematology ward I remember on the first morning an older woman having an argument on her mobile, basically telling her husband that he was not supporting her and she didn’t want to see him again! That scared me.
As a married woman, twice your age, I certainly felt unattractive (2 scars, a Hickman Line for most of 18months, and swollen face from steroids). I also hated that my body had let me down and was full of poisons. Add to that my husband, was running me back and forth to hospital once a week, (when not visiting every day when I was admitted to hospital), and was looking after me very well, but now seemed to be more carer than husband or lover. S** was not on the menu. When we left hospital after my pre-chemo chat with my consultant I did insist on going and buying some protection, but turned out to be more hope over experience LOL.
The important thing was making the effort to be kind to each other during this time…exchanging hugs, holding hands, saying thanks for a thoughtful deed. Most important of all is keeping a sense of humour.
It took time (especially as his father died soon after and he was then dealing with his mother’s needs as well) but we eventually managed to become partners again. No swinging from chandeliers though.
I think this is a really interesting topic and very brave of you to be so so honest and open. As you know, I am/was not the patient, it was my young son, so I can’t speak to the effect of medication, but I do know that emotionally I felt, and still do, drained and exhausted from it all so s*x has definitely moved down the list of priorities!
I’m interested in what @Pisces56 has said about making the effort to be kind to each other. Sometimes I feel that our relationship has turned very practical and we need to put some effort into being kind to each other ways.
Thanks for raising this subject. I’m sure many will be interested to read it and know they are not alone, even if they don’t necessarily comment.
Hi @Emma_paine and all, to come back in on this vital subject. I did not really share my experiences, you see I did not realise how I shy away from the subject of s**. I blame my and my husbands upbringings. I don’t think we talked about ‘it’ and our needs enough. I think, since my diagnosis and actually my pre cancer abnormal smear test op, my osteoporosis, my prolapse and hysterectomy that we have slowly drifted apart intimately and yes, I think we are now a good partnership, each having our defined roles and responsibilities and we are very much in a set routine. Is that enough? Yes, I think it is for me although I might like a few more cuddles, but I get those, in a funny way, through Bloodwise roles support and a network of very good friends. I count myself as a very lucky girl.
@Erica, just goes to show that the swinging sixties passed most people by, and didn’t make us freer to discuss emotions and needs
Yes this is a interesting topic. My guess is that many people are too frightened to talk about it, so I will open up here. In my own experience, I have found it difficult to want a relationship because I don’t feel confident. I’ve even been given Viagra but have yet to use it. It’s a mixed bag emotionally for me as I also think that I have too much baggage health wise so I think that another person will not understand. Actually since I relapsed in 2009 I’ve not had any involvement physically with the opposite s**. I’ve had counselling sessions but so far I’ve not been able to get past my lack of confidence. I tend to push females away if I feel that they want to be close. In my mind my desire or s** drive feels good but when a situation arises I pull away.
Hi, this topic has been a regular discussion between my husband and I. I’m only 60+ days post SCT so alot could change over the next few months/years but since being diagnosed I feel so uns3xy. The change in shape of my body, my hick line, my baldy head yet growing hair where I’ve never had hair before haha. Since SCT I tear really easily even with lubricant, my husband is sometimes scared to touch me he says I’m so delicate now. We are waiting to see a s3x psychologist through the NHS, waiting list is about 7 months. I’m not sure if this will help at all but it was offered to me so I decided I could atleast try. I’d love things just to go back to normal but I think this might be unrealistic due to all the treatments I’ve had. Waiting to find out if I’ve gone through menopause which would explain a few things!
@Goody I developed sores all around my intimate area without being touched after my SCT. I was 51 when diagnosed and never had a period once I started chemo. I have heard some patients are offered HRT after treatment. It is quite amusing finding out where a hair is going to grow next. I hope that your recovery continues to go well
@Clilau1960 Welcome, and thank you for posting. In a way it is reassuring to know that women aren’t the only ones who have a crisis of confidence after treatment. I hope that you find a companion to share special times with, even if it doesn’t lead to s**. Just to have someone to hug, or hold hands with and share confidences with is special. Best wishes
Haha starting to look like my dad with my moustache! Yes they say I will probably be on HRT eventually x
Brilliant topic @Emma_paine thank you for being so brave and open and starting this topic.
I am wondering, for those that have shared - was this something you had thought about or been able to discuss with your treatment team when you were diagnosed or during treatment? Or is it a big taboo?
It just seemed so far down the list that I thought it was stupid of me to even think about it. I hated my body so much that I couldn’t understand that anyone would feel differently.
Hi Dawn, I have never spoken to anyone else in the world about sxx, intimacy or relationships. My experience of the medical profession is they stick to the area of their expertise and don’t raise any other relevant medical or emotional issues. I think the way of the future should be that patients are looked at holistically, medically (previous, current and hereditary) and emotionally.
I feel comfortable enough talking to my team about it because it’s important to me. Although I don’t think anyone wants to discuss something so private. I’m hoping I will get some much needed help. My nurses recently handed out a questionnaire to ask if we think they should include an apt with a gynaecologist post transplant to discuss any problems we might be having. I think this is great idea especially for someone who might feel uncomfortable approaching the subject in the first place.
@Goody I am pleased that things seem to be moving along the right lines. I am seen in the gynaecology dept for bladder and prolapse problems which were made worse while ill, but I put up with the inconvenience until I approached my GP for a referral when I was concerned my problems could be ovarian cancer. It would have been helpful having a well woman type appointment a few months after treatment finished
Hi Louise, @DawnBloodCancerUK, @clilau1960, @MrsGriff, @Emma_paine and @Goody. I also had a bladder and vaginxx prolapse and a hysterectomy in the last few years and at no time were the words intimacy or sxx mentioned by the medics, in the extensive paperwork I was given or myself !!
I think that’s so sad that it’s never mentioned to most people. It’s such a big part of our overall health. I hope this really is going to change in the future…
It would be great to hear it talked about more, especially as cancer treatment affects a whole person, including fertility and sxx life!
Well as we’re bearing all - I used to be a ‘Martini girl’ (anytime, any place, any where) but after treatment for AML & a SCT s** was the last thing I was interested in.
Can’t say how many months later, we tried to resume sual relationships. Horrendous! They tell you they’ve put you through the menopause early, ok, no periods, can’t see a problem with that. What they don’t mention is the dryness down below.
Well it’s not mentioned between your girlfriends that are experiencing ‘the change’ either, all they talk about are the hot flushes.
We tried KY jelly but that’s hardly romantic! Penetration was painful. So rather than try we kind of gave up. My husband was frightened of hurting me & I was frightened it would hurt. So it went by the by. However, I was cured from cancer & the SCT but I didn’t feel like ME due to the total lack of libido.
I mentioned it at Wellbeing Events & to my consultant but no one really worried about that side of things. I did! I wasn’t ME! Complete!
Eventually I was referred to a obstetrician who was very interested in the effect of SCT on women’s libido. By this time I was about 55 & my husband 61. I was given a very mild HRT pessarie & a lubricant, called of all things ‘YES, YES, YES’.
Because of his worry for me & not hurting me, my husband experienced erectile dysfunction for the first time ever. So now I’ve got no libido, & he’s worried he won’t be able to get it up.
The pessaries didn’t seem to make that much difference & now we were avoiding saltogether as my libido wasnt there & he had worries about performance.
So, on the spur of the moment in Boots one day, he bought some little blue tablets.
We’re fixed! Not as frequent as before my illness but we’re 10 yrs older anyway.
However, I have been sworn to secrecy regarding the Viagra. He wants no one to know about his problem down there.