Hi all, some of you may remember I posted a while back about being referred to a menopause clinic a couple of weeks ago, on account of having no libido and also having some post menopausal side effects (waking during the night with prickly skin sensations and being too hot). I contacted my GP surgery today to find out if a letter had come back from this clinic, as anything the Consultant proposed has to be handled by them. The GP the letter was being sent to was the one who told me back in January that he wouldn’t sanction counselling via my oncology clinic as he felt I didn’t need it. According to him as I had managed to be positive all the way through chemo etc., I had to just turn things around and be positive again!
Anyway, I got the practice manager on the phone and she confirmed a letter had been received from the menopause clinic, but the GP had given it to the receptionists saying it was just for filing. However, the practice manager confirmed that the letter contained details of what to prescribe for the menopause and also that the consultant was supportive of me having access to counselling. When I told the manager what had happened with my GP in January she said “right, you won’t be wanting to see him about this then” and she gave me an appointment for the GP who referred me for the breast lump, who just happens to be his wife and has pretty much the same attitude (oh, it just gets better, eh?).
She was very matter of fact and said she thought there had been a misunderstanding over getting access to counselling (well, I figured she would say that seeing as it concerns her OH) but says she has no problems with it and if it’s too late to get it via my oncology clinic she will refer, but it will take months for that route.(Bear in mind my last onc appointment is next week). She added a bit about “oh well, as you are the sort of person who normally gets on with things and who was doing well, so I’m a bit surprised that you are feeling the way you are”. I pointed out that I was initially misdiagnosed as the cancer wasn’t picked up by the triple assessment, only after I had a fibroid removed which was hiding a tumour (I was also told I didn’t have to have the fibroid removed, but I elected to have it out). Because of all this, I ended up being 4 weeks further down the line than I should have been. I’m also not getting on with my sister who is in denial about the cancer and have confidence issues relating to the new job I took on which I had to leave due to the negligence of the employer. 12 months prior to BC I had just lost my dad after a long struggle with dementia. When I was diagnosed I didn’t have time for my feet to touch the ground and I kept myself totally focused on getting through each treatment - I made it clear to her that all cancer patients do what they can for themselves. She said “oh yes, I forgot about what happened at the beginning of this”.
Sorry to go on, but my point is - do GPs actually understand what patients with serious illnesses go through psychologically? The feedback I’m getting is that I’ve been patched up and made better now so I should just go away and step back into my life. When I was very ill, I only went to my surgery twice outside of having my 3 weekly bloods taken and getting a sick note - one of those appointments was with the nurse when the skin on my breast broke down after rads. Everything else was dealt with by the cancer centre I was treated at, so I think my GP surgery got off pretty lightly in all honesty; a bit of decent support wouldn’t go amiss when I’m so close to the finish line. I left wondering if they have actually read half of the letters they have been getting from the oncology clinic…sorry ladies, I just had to get all that off my chest!
I’m so sorry to hear about this latest hurdle for you. It’s all well and good ppl spouting on about how well you usually cope and how this is so unliek you etc etc etc. everyone has a limit as to what they can deal with and when the limit is reached then there should be no question about bringing in some additional support.
I am one of those ppl who copes with loads and just gets on with it … and so far I’ve been very in control throughout my cancer journey but there have been flaky moments, luckily just minor ones and I’ve managed to get back on track… but if I find in the future I need help then I will stamp my feet until I get it.
I totally feel that if I can just get the right help to get me over this last hurdle I will be able to put myself back together and lead a good life. I don’t think I am asking much.
When I was talking to her about the menopause and the fact I haven’t had any intimacy with my OH since Nov 2006, I did not find it helpful to get the reply “oh yes and as you are only 46 you are probably thinking why am I getting no sex” followed by “well, you really just need to relax”. I guess you don’t expect this from a female GP. Mind you, my OH went to her once and he was terrified of her!
Hi
Have you thought about changing your GP surgery.
I had a thoughtless one and I changed surgery altogether, the new ones are brilliant, they listen and help.
Have a look at other options
Ann
I think what also upsets me is that they were so very supportive when I had to move back up here from London to take on the situation with my dad’s dementia problems; nothing was too much and they sent District Nurses and put me in touch with a carers organisation to get help. There are 3 other GPs in the practice (all men) and I would not go near one of them as he has no bedside manner to speak of, but perhaps I will try one of the other 2 in future.
I haven’t spoken to my Breast Care nurse since last June as I have rarely needed her assistance (and I would rather the clinic resources went on the ladies who most need help), but I’m considering contacting her tomorrow.
If you had a good relationship with your bc nurse then you should I,like you onlt visit my gp when Ineed a sick note so that amounts to twice in 6 months and due to go again .See a different dr each time so wouldn’t confide in them anyway.My bc nurse is fantastic and I hope she is around for a good while.I too am one the coping well brigade but somtimes I want to scream that "I am really ill you know it won’t go away ", I won’t ask for help. would rather get on with it, which is wrong sometimes, but we are what we are.
Keep strong
Mary
X
Have you considered printing off the article by Dr Peter Harvey and showing it to these people who think you should just pull yourself together? Maybe if they see a consultant clinical psychologist talking about how difficult it is after treatment has finished they may take more notice?
cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/FILE/article3.pdf?openElement
Can you not get counselling via the oncologist? I received counselling as I was dx just three weeks after my mum died of cancer. This was organised by the hospital when I went for the oncology planning appointment, my GP had nothing to do with it.
I think the problem is the GP’s are only human and as with all humans, we all have our own ways of handling things. The trouble is their own values and beliefs rub off on how they treat people, no matter how hard they try to be empathetic. So if they are the sort who breeze through life (or more likely, have never had any real problems of their own yet), then they probably expect you to as well, especially as they have already seen how you cope under pressure. However, you have had an awful lot to deal with and from the sounds of your post, you are no longer coping as well. Therefore, clearly you need some help. I guess they are unlikely to change and as others have said, ask for help elsewhere, like the hospital. It is imperative you have a good relationship with your GP, not just for this but for other things in the future. I would seriously think of changing them?
Hi RoadRunner
Wow I have just read the article and found it very powerful and exact.I am not good on pc’s and wouldl like to forward it on, can you help please;
Thanks
Mary
x
Hi there,
i think you have been unlucky with your GP mine have all been very supportive (once i get past the receptionist!). I’de see if you can change your GP like Cathy says.
cheers
caroline
perhaps they don’t have sex either!!! (your GP and his wife) - so they think it’s normal!!!
sorry - couldn’t resist it!
I think you’ve done extremely well to get through that lot and you deserve a bit of support - keep at it and get what you deserve!
love FizBix xxxxxxx
I am so sorry for what u have had to go through, but relieved to know i am not the only one who has totally lost her libido since dx. I was put on tamoxifen after mastectomy, chemo and radio but i found it awful to cope with hot flushes etc, so got put on arimidex. Even though hot flushes are better still got no sex drive. Did your onc help u with this as i have found they just tell me to relax, well i have relaxed as much as i can but still nothing there. What have other people tried with loss of libido that has actually worked at getting it back? I am 52 and this is having a real affect on my marriage
Hi All
Breast Cancer Care have published a booklet called ‘Sexuality, intimacy and breast cancer’ which may be helpful for you to read. You can access this via the following link:
breastcancercare.org.uk/docs/Breast Cancer Care_sexuality_0.pdf
Best wishes
Katie
Mary,
If you want to forward the link to someone else, say via an email, or on a posting on this site, you need to highlight the link with your cursor, hold down the control key and press ‘C’, this will copy the link. Then go to where you want the link copied to (eg the email) put your cursor where you want the link to appear, hold down the control key and press ‘V’
and this will paste the link into your email.
Cherub
My surgery have also been unhelpful and at times downright obstructive. I mailed them the other day and said “I need support, not suppression” but I’m not done with them yet with regards to delayed diagnosis. Once that’s settled I will register across the road.
You should have the best and if that means changing surgery then do it and also write to the practice manager to point out why you are doing it. List all the things they should improve on. Go to the prospective new surgery and ask to see a doctor and “interview” them before you decide, get their views on things that are important to you. YOU are the customer and they are providing a service paid for by YOUR taxes and these days they are well paid to do it. Try and keep the upper hand and don’t go all deferential on them, I’ve been more assertive lately and they sit up and listen. I aksed for a copy of my records recently and they dithered for 2 weeks before answering so I wrote and told them when I expected a reply and when I expected the records to be ready. I also told them they’d overcharged me according to the Data Protection Act and they owned up and will refund. I have now asked to see my records AT the surgery so I can check if they missed anything and this is free - I KNOW they omitted at least one letter associated with my delayed diagnosis.
Get tough with them, but try and keep them onside. I think I have achieved this.
I’m taking Clonidine for the hotties and it works to some extent, also some antidepressants actually alleviate the flushes if you’re willing to try. Sage tablets are said to help too.
Best of luck and keep us posted.
D
Just wanted you all to know I saw my onc yesterday ans she had already overruled my GP surgery by sending a letter to the psychologist about counselling. My breast care nurse phoned me today to say they have fast tracked me and I will be seeing someone within 14 days to address all my niggle confidence issues etc.
Yesterday should have been my last oncology appointment as I finished with Herceptin 4 weeks ago. However, my onc has told me it’s perfectly safe for me to use the low dose oestrogen tablets prescibed for my menopausal symptoms in the short term; on account of this and having some counselling she said she would like to give me another appointment for 3 months time as she wants to know how the counselling went and how the meno stuff is coming along. She also just feels it would put my mind at ease before I get referred back to just the yearly breast check up. However, she also said I would be by no means cut adrift as they are happy to see patients who are in remission at any time if they have problems - she said any future problems or symptoms or I don’t like just to contact my nurse for an appointment. I was really grateful to her for this, I really have been with one of the kindest medical teams over the past 18 months.