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unable to be divided or separated.
if there’s one thing I would like the nhs to take on board is the fact that the emotional well being of their patients is just as important as the medical care they receive and if it isn’t a integrated part of the treatment plan it’s often partners and family members that are left at a loss to know how to help their loved ones. That’s what patient centred care should really be, but I see enough posts to tell me that we have much further to go to make it a reality, an example of that would be the after care for men with prostrate cancer and their partners.
I totally agree, McMillan is great for sharing your worries too but there is no real help or advice for partners to discuss how they feel or how to be with there partners after diagnosis x
Dear Kazdan I think any condition that effects the intimacy between partners is something that should be taken seriously by the medical profession as it can have far reaching consequences. It’s one of those subjects that has yet to be discussed openly in the media as it’s such a delicate topic. I don’t think it helps that men find it difficult to open up about their concerns for the future. Part of the problem i suspect is that as treatment is generally successful your expected to toddle off and just get on with things, if only it were that simple. Are there support groups where men can go and talk freely about their problems ? And I think the same should apply to partners. Although it’s not a substitute I think maintaining body to body contact is important even if it doesn’t lead to full intimacy.
From my experience, our local Maggie’s Centre run a weekly men only support group covering ‘everything’ with no subject taken off the table. They also provide support for couples again no subject is bard.
We also found our SCNs to be very supportive during and even 4 years post treatments so there are pockets of support out there.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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DearThehighlander that is great news. I hope anybody in this situation will consider this as an option to get some much needed support. It’s a big step but one worth taking to have a better future together as a couple. I know how much it has benefitted me to be able to talk freely about my own individual problems in a non judgmental environment. When you say things out loud they seem to have less power over your emotions.
Johnty. Totally agree. Since diagnosis at 50 I had to have conversations either with nurse or to wife that I never thought I would. Incontinence, erections .... I some respects as men we are too embarrassed to talk about these things. I generally find if I don’t talk about things that concern me that they come out in an unhealthy manner (being short or grumpy). If I hadn’t been asked directly by nurse I’m not sure Iwould gave instigated those conversations.
DearYoungMan, I’m so glad to hear you have been able to have some discussions about your condition. I’m a all the cards on the table kind of person, but I definitely think it’s easier from a cultural point of view for women to open up. My husband is the stoic type but doesn’t have a problem talking about anything surrounding my blood cancer, I often wonder if he was in your position whether he would find it as easy. I believe some of the hormone therapies that are prescribed for prostrate cancer play havoc with your emotional state as well as your body and that’s a difficult thing to adjust to when you have previously been used to feeling a different way. I hope your treatment is keeping you well and I believe some maggies centres run support groups where men can have no hold barred conversations which I think might be very therapeutic.
My partner was diagnosed at 57 x we where basically told he had prostate cancer and left to it once decision was made on the treatment plan x we have had no support from anyone x everything that we have found out and got help about has been from our own research and asking for things x our gp is reluctant to help us as he said it would interfere with the treatment plan that the hospital has put in place x he will only supply meds if we get the hospital to authorise it first x it’s great you’ve had a nurse to help and confide in x
I fully and totally agree with you that a more more holistic approach to care, support and medicine in general, should be administered.
We as humans are not just physical beings we are emotions, feelings, a conscience and a sub-conscience , a soul or unnerving spirit..
Medicine tends to start with the mechanics of illness, and like all good maintenance engineers want to try and fix it or at least patch it up. But rarely do you get a medical genius with pure empathy.
As you stated pure person centred planning starts with the whole person presenting..not just the initial symptom. Men are notoriously withdrawn from talking about their feelings, all our lives we are drop fed stuff like, big boys don’t cry, suck it up, move on, stop whinging...nowt up with you get a grip......
Then as we grow older we continue to believe we are invincible that a month long cough is just the norm, or blood on the loo roll is just Piles or after effects of a curry, or the chest pain upon exercising is just your unfit or indigestion... the list goes on...
Us men either ignore our health or suppress the symptoms with drink and other things ...self medication is a rife amongst men but not totally exclusive to us...
When as men we eventually attend our Doctors and usually with age related issues of like aching joints, back problems, trouble with water works, those Piles mentioned earlier, or sadly as we get older, grief and loss, feeling unhappy, anger or irritability ( and on that subject they are there because if they don’t go partners will leave) ...then the real issues of hidden poor health come crawling out of the cupboard of denial...
usually high blood pressure, high cholesterol, type 2 Diabetes, Erectile Disfunction, obesity related illness, COPD, alcohol addiction, drug addiction, Insomnia,Fatty liver disease, Kinney disease, prostate issues, yes PILES....Depression, Anxiety, etc...etc....
As men we have neglected our health concerns, and allowed the medical profession to assume that as men we don’t want to dissscuss the side effects physical or emotional of what we present with. The system will continue to do what it’s always done unless we say
STOP !! What about me as a person...not just your diagnosis...what about my spouse, partner, family,
i unfortunately sort of hit 50 and the next 5 years dealt out health issue after health issue...one of those issues was Peyronie's Disease, I was told by the consultant who saw me, “there is no real cure for this but time. There is no follow up it will overtime correct itself or if it becomes of real concern see your GP, but give it a few years first to see if it self corrects”.
It hasn’t...but many other health issues top trumped that one, where by its currently of less concern to me or my good wife of 30 years. But that doesn’t mean things don’t change, or if I wanted support that it’s forth coming as it’s not.
hopefly in an age of opening up, men will do more to not just have good health and well being, but be a major player in preventing and reducing Male health issues by, recognising change, overcoming embarrassment, being open about health and physical and emotional, and when seeking medical support settling for nothing less than holistic treat meant.
Sorry for the long post, but I’m a bit passionate about this...stuff Jayne
DearVilla82, I think you have summed up really well the problems with men and how they approach problems with their health. I believe this is somewhat compounded by general practitioners who have a tendency to hear what they see, and by that I mean a kind of stereotyping, instead of probing a bit deeper with male patients who are prone to minimising there symptoms they say you feel the way you do because your old, too fat or not taking enough exercise, instead of considering more serious conditions, it doesn’t help that some men through fear of illness will let them selves be fobbed off, it’s a viscous circle. That’s why it’s so important to see the patient in the round and treat them holistically and provide patient centred care.
Villa82. You are spot on. Also when you ring up for an appointment and it’s deemed not urgent and you need to wait 3 weeks I certainly feel like I’m wasting go time. If I didn’t require a blood test for high blood pressure I wouldn’t have asked for psa. I’m 50 and it had already spread to my ribs.
How many other men have advanced prostrate cancer but don’t book appointments because of embarrassment over Ed, or accepting more regular visits to the toilet with aging, putting aches and pains down to aging and not wanting to bother their gp or battle the receptionist for an appointment. Most men would only mention some of these symptoms at the end of an unrelated condition
Men should be encouraged for screening, heart and cancer checks
as they say Prevention is better than Cure, and how do we prevent... we notice things earlier...and we report it and treat it to prevent escalation...
by educating are fellow men to be more observant about symptoms and prompting them to go to the doctor is a start...but as men we owe it to urselves to be more vigilant...
your right in what you say....many have advanced conditions because they never sought medical advice...for a multitude of reasons
i don’t know if you remember some years ago a West Indian man who runs a care repair shop in London was diagnosed with prostate cancer, that man went on a mission, he told all his West Indian friends ( hi proportion per population of West Indian males have prostate disease) to get a check up....he went one step further offering discounts on Car M..O.T and repairs if the customer had a prostate check up.....he has saved many many as a result of his good deed and intention....
Good luck to you YoungMan I wish you well.....
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