Thanks Nottsgal
Unfortunately I love hot food, wine etc. Got the chillo pillow, cotton bed wear, window open etc. The only thing I haven’t tried is jumping into a local pond or pool! I am thinking of trying a tennis sweatband as I woke up early hours of the morning blinded by the perspiration which isn’t getting trapped by the eyebrows I haven’t got!
Just received a PM from BCC mods after I asked them to have a think about this thread. I’m sure we’ll get response on this very important subject shortly, so thank you BCC for dealing with us as women, not just as “patients” or “sufferers” or “victims”.
CM thanks so much for that really interesting link and for championing this cause with the BCC mods.
Sleep well
Liz x
Well done CM and LIF
X
Hi everyone
I’ve been following this thread with interest, especially as its “my area” of work. (I’m currently working on a project for Breast Cancer Care looking at body image and sexuality). There are a couple of booklets that you might find useful. They aren’t breast cancer specific, but they are more explicit than Breast Cancer Care’s information. I’ve attached the links here:
cancervic.org.au/downloads/brochures/cancer_types/Sexuality_cancer_08.pdf
One is from the Cancer Council Victoria (Australia) and the other is from NHS Pan-Birmingham Network.
If you wanted further support on this issue, a psychosexual therapist would be able to support you in dealing with your sexual relationships and symptoms. You may be able to access one via a Relate centre, if there is one near you. Some Relate centres have links with Macmillan (e.g. Manchester and Cheshire), so it might even be free, but in most cases there would be a charge.
I hope that helps
Melanie Larder
Breast Cancer Care
Hi Melinda, and thanks for jumping in with us on this one. I’ll be taking a good long look at the links you’ve given, once I’ve woken up.
Another well done for BCC in appreciating the impact of this disease on so many parts of our life, and in having someone like you who’s interested in doing something to help.
One word of caution, it can take AGES to get counselling from Relate, up to a year in some areas, which in my view is far too long if a relationship is already in trouble.
On a lighter note today, at rads planning I had to sign a form stating that I wasn’t pregnant… gave me the first out loud belly laugh of the day - as I pointed out to the rads techs that, immaculate conception aside, no chance of pregnancy when not having sex…
Hi choccimuffin
Parents evening so well down wine bottle so excuse spellings and madness.
I’ve been on prozac and tamoxifen for five years and no one has ever said its not a good idea!!!
As for numbing bits I had seratonin at first but orgasms were impossible. Now on prozac and can do DIY and electric ones. GP treated patient with premature ejaculation with seratonin after I went back and complained with great results.
Maybe all oncologists ,GPs and BCN should read this forum.
Happy days
Chinook.
You’ve got to love the Aussies, that booklet in Melanie’s link is just so straightforward and down to earth. Bless 'em!
I think a more difficult problem to solve in the longer term is the attitude of medical professionals to women whose sexuality is affected by cancer. It does seem as if it’s just not something that even deserves to be mentioned for all sorts of reasons, so Melanie and the rest of the BCC team may be able to have some influence in that respect, while the rest of us get on with trying to find a way to keep or rediscover our own personal ways of dealing with cancer and sex.
Well done Australia!!! That is exactly what is needed…Thanks Melanie i think that will help a lot of people!
Choccie you are right re the medics…BCC please kick em a bit on our behalf …please
post deleted
Norberte,
I have had a look through those info booklets. I am straight, but do not feel that a lot of what is written is directly relevant to me either. How can it be when it is written for both sexes, and at patients, relatives, and concern many different forms of cancer and it’s treatments? So I don’t think you will be the only one to feel that it doesn’t really seem relevant. I would be interested though, to see whether the further reading that is suggested in the Birmingham one is purely hetro based. Do you have any idea?
I have yet to read ANY info booklet, and I’m afraid I include all the BCC literature in this, that I feel speaks directly to me. However, in some cases, they have provided a starting point for me to find out more - bringing me here for example.
I am not for one minute belittling your feelings of being ‘marginalized,’ just saying that we are ALL in a terribly vulnerable place at the moment - some with more to cope with than others, but none who are trouble free. I hope we can all still pull together, and carry on giving each other support and friendship,
Tracey
Norberte, I think you have a right to be cross, but please be cross in the right direction. I didn’t say the aussie booklet was “really really really good” but it’s a darn sight better than anything else I’ve seen (but that may be just because everything else is pretty useless). It’s aimed at patients who have lots of different cancer effects to deal with, not just breast cancer, and at male and female patients, who I’m sure we can all acknowledge will have differing sexual needs. Oh, and it’s also aimed at partners, friends and family. So I suppose “aimed” is a pretty poor choice of word on my part, seeing as it’s taking a more blunderbuss approach than a targetted one and trying to hit everything. Yes, it misses detail for LBGT cancer sufferers, but it also misses detail for different racial or religious groups which may have different attitudes towards sex and sexuality - I am not qualified to make knowledgeable comment as I’m just a boring, ordinary hetty-betty who has led a very narrow life so far, so I’m sorry for not understanding in depth, I just haven’t had the experience that would be needed for me to understand the way you do.
The point I tried to make was that while the aussie booklet has tried to give some practical pointers, the bigger problem is the medical professionals’ attitude to women whose sexuality is affected by cancer, because it’s just not seen as something that even needs to be discussed. And that group most certainly includes EVERY woman, not just straight women. You have a much more difficult time than us HBs, as you have often said, but that’s for the very reason that sexuality is just not recognised. For anyone. So when you aren’t run-of-the-mill-part-of-the-majority, you’re treated like a alien. Please don’t think that us poor HB goldfish don’t acknowledge all the extra problems you have every day in being acknowledged and accepted, but we simply don’t understand the difficulties as acutely as you do, because we haven’t been subjected to them. But we can empathise as far as our limited understanding allows, because as women we have experienced a small degree of the same attitudes.
How would you improve the booklets, or would you just chuck them in the bin? Would you integrate lgbt pics and tips with heterosexual stuff or would you have sub-sections in the male and female sections? Would you include tips on how to talk to those in the medical profession? Would you create something for the medical profession to read so they can get an idea of what lgbt needs are? How could you try to ensure that they even get read? (It’s usually the people who already know it all that need the most educating!)
As for this being a world where lgbt people are mostly invisible, I completely agree. But I don’t know what I can do about that. There is almost always going to be a “default” position in just about anything. (The default is that the boss is male. The default is that people live in couples. And sometimes with children. The default is that people are heterosexual.) How should things that are NOT the default be dealt with?
Sorry, this has gone a bit off the topic but it’s something that does need to be discussed, I just don’t know where’s the best place.
I haven’t yet got round to looking at the Birmingham one so I can’t make any comment on it at all, so my comments are solely about the aussie booklet.
Hi everyone
I’ve passed your comments on to Melanie but as she works part-time and isn’t around at the moment, I thought I’d respond in the meantime. I’m sure Melanie would acknowledge the limitations of these booklets, not least in the lack of references to LGBT people, relationships and sex. I’m sorry we didn’t mention these limitations when we posted the links.
As many of you have found, finding any information about breast cancer and sexuality is difficult, let alone anything that’s actually inclusive. It’s certainly true that much more work needs to be done in this area (as in so many other areas) to make sure that information and services are truly inclusive. If anyone does come across any resources on this topic that are more inclusive, please do point us in their direction.
with best wishes
Leah
I looked through the Aussie one, and felt that at least it did confront the issue that women might just want a sex life during/after cancer… but that was pretty much it. Interspersed with pics that might have been photocopied from the Joy of Sex, without actually explaining why any particular position might be better than another…
Norberte, I’m sorry for your anguish and anger, and I do think you have valid points - but don’t scream against those of us who would truly wish to support you. So we don’t ‘get it’… apologies for being hetero women who are just doing our best. You know what? The medical profession doesn’t get our needs either… as is evidenced by this thread.
It seems to be that the devil is always in the details… and what I need most from any sort of medical literature is advice on how to overcome/treat/lessen any medical symptoms that may occur through premature menopause or treatment… such as vaginal atrophy, complete lack of desire, difficulty with orgasm, etc etc… and I really don’t see that that is any different to information that a lesbian/bisexual woman would require. I don’t need the NHS to tell me about different sexual positions… there are plenty of publications that abound for this, for those lacking confidence or imagination, and I’m sure that lesbian couples are just as capable of figuring out what does and doesn’t feel good as others.
When it comes to emotional anguish/differing sex drives etc… again, what difference does it make what sex the partners are? Or whether they are same sex or hetero? Advice for this is important and pertinent to anyone going through it.
The australian booklet may not be perfect, and has evidently distressed you - but ‘at least’ it acknowledges the gay community - which is a step ahead of much of the literature here. Possibly the best way forward is for far more individualised booklets - rather than one that trys to be all encompassing, but really doesn’t manage it. I don’t particularly need to know about erectile problems, for example…
Just please, Norberte… don’t damn us for not understanding. I have a pretty tough time understanding myself at the moment, as it is. And for anyone else, if you can find something good and encouraging in anything you read - then three bloody cheers… because there’s little enough advice out there!!
Sophie xx
I agree with both CM and Trip.
The medics are trying to encompass all in one booklet and really are only covering the technicalities of ‘how to go about it’ rather than ‘how to even get to go about it’, which i would say affects all of us, regardless of whether we are straight or gay.
I agree with CM regarding the generalisation of the booklets, in as much as they don’t include every aspect of modern society but this is the case for many of us - even hetties. I hated watching children’s programmes with my kids when me and their Dad split up because we didn’t have the ‘happy mum+dad’ family, we weren’t/aren’t that norm. I wouldn’t expect anyone who hasn’t been in that situation to start shouting about it because unless it’s you it doesn’t register.
I have to say that i am one of those who have added their thoughts and wishes to the thread mentioned and find it quite insulting for that to be seen as glib because i’m not shouting about lesbian rights on this thread. I offer my support to all that are in this rubbish situation: regardless of who they are or how they live their lives.
Back to sex - we had some and its a good thing…reinvigorated me for helping sort some info for everyone who needs to feel they get this aspect of their identity back, and get this connection with their other half/sex partner back, and I think this thread is really helping sort out what could be in such an information source. Hope BCC take up the challenge with our help.
bw Nicola
Nicola… now I feel guilty because someone out there is actually having sex!!! My poor OH, patted me on the bum last night, and said ‘when you’re feeling better’… which makes it feel like yet another hurdle to get past… damn damn damn, I just want to have the enthusiasm back!!!
(Pleased for you, tho, honest <grin>)</grin>
yeh its like that aint it - like another hurdle - but once you are over it once…!! ANd if not, if you really don;t fancy it, then thats got to be OK too and a solution found to all the issues that brings…
bw Nicola