New member looking for advice

Thank you so much Sarah and Latestart for your advice and wisdom. And thank you for opening up to me. Going through what I did can feel very isolating and lonely. To hear from other people who have been through the same thing or something similar is strangely comforting. 

I sincerely wish you hadn't had to go through it but you did and (it sounds like) you've come through maintaining a positive mental attitude. You're both much further through all this than me and your messages give me real hope. You've both reminded me that If I remain determined and stay positive there is a life worth living for me even with the adaptions I need to make and accept. That's something I need reminding of on my bad days.

Thanks again. I'm off for a trawl around the forum to see what I can find.

Peace n Love.

Dom. X 

Morning Dom

Acceptance is a big part of going through a TPE, and recognising that is important. I had a few weeks to try to prepare mentally for surgery, but still found the reality a huge life change. 

I think it can be hard in a different way for a woman in that we lose our entire reproductive system, and vagina, which means accepting that a normal lifestyle is taken from us along with everything else, and that is very different to only having a cystecomy and living without a bladder. 

I found it difficult when I first heard about the potential surgery because my tumour measured less than 1 cm, and it seemed to be a very drastic solution to a relatively small problem! However, I was quick to accept it was the only potential solution which would offer a cure rather than palliative chemotherapy at the time. 

A positive attitude will definitely help you, and understanding that recovery is not quick from this very radical surgery. But I hope you have got some extra hope from the fact that I am now this far out of surgery with no recurrence. 

Keep the faith, and keep asking questions if you need to. 

Sarah xx

Hi Sarah.

You've hit on the exact issue that I am still struggling to come to terms with and I'm not entirely convinced I ever will. Also, your story sounds quite similar to mine. After my 23 rounds of chemo there was no cancer visible on any scans. My local health authority declared I'd had a total response to the chemo but St Marks Hospital requested a colonoscopy just to be certain.

Sure enough, traces of cancer were found and my only chance of a future was the TPE surgery. This was on a Friday and I had the surgery the following Wednesday.

Having had everything removed from my pelvis has resulted in me losing all sexual function forever. It's never coming back.

I describe it to people like this: I look like a man in the same way that a watch without a mechanism still looks like a watch. 

Ok, I've kept my sexual organs but they are completely numb and I will never experience any feeling in them again. All the nerves in that area have been removed and they're never coming back. If all my 'bits' fell off tomorrow it wouldn't change my life in any way. They're entirely redundant.

I'm 58 and have been with my wife for 35 years, we have two adult sons. She, my wife, has been very understanding and supportive. If anything, this whole ordeal has brought us closer together. We plan to learn some massage techniques to try on each other as a way to maintain physical closeness.

However, knowing I will never again be able to express my love for her in the normal physical sense breaks my heart. Like I said, I don't know that I'll ever really come to terms with it.

I dreamt about her the other night. That we were getting close and I felt those familiar feelings of arousal and anticipation mixed with excitement. That's as far as the dream went but I woke up to the stark realisation that I would only ever experience those feelings in a dream from now on. It's fair to say that that day was a bad day!

I know I have to accept it because that's the situation I find myself in. I just don't know if I can.

I hope what I've written Isn't inappropriate. Just writing it like this feels cathartic.

Thank you for your previous post which prompted me to open up.

Dom. X  

Hi Dom

Sorry I wasn’t able reply earlier-a long stint at the hospital today (not for me this time!) meant we spent hours trying to find the right department, which had moved, and 2 hours travelling which made it a stressful day.

I find it courageous to admit personal difficulties as I completely understand how vulnerable it can make you feel, and typically the only people who understand are others who are in a similar situation. We had a discussion thread in the community some time ago which you might find interesting if you haven’t come across it yet.

Sex and cancer-let’s talk

There were lots of men commenting and being very open about their situations. I really can empathise where you find yourself now, and there are a lot of feelings which can accompany this-the obvious loss of what you used to have, but also the guilt you can feel where you blame yourself for where your relationship finds itself. 

I’m on my second marriage now-was married for 22 years the first time round, and been married 12 and a half years so far. My first husband is a lovely chap and father of my 2 kids, but I think he would have found it both very difficult to care for me during my treatment and surgeries, and extremely difficult if not impossible to live a life without sex. 

I am very, very fortunate in my second marriage where the most important thing, beyond everything, was my survival. I was reassured that nothing else mattered and that continues to be the case. We are very happy together and appreciate what we have. 

Obviously I’ve had much longer than you to accept the situation but I’d encourage you to work on it, and believe your wife who will appreciate your survival more than your “bits”! You learn to adapt and I know we still feel very close and as in love if not more than ever because of what we’ve been through as a couple. 

Kudos to you for opening up, and I hope it helps as you work through everything and process your experience. If you feel you would benefit from counselling in time, I’d recommend it. I’ve done it myself and really found it helpful. I remain astonished that counselling is not a mandatory part of the preparation for surgery and recovery itself. I believe it should be. 

Please don’t be worried that you’ve written anything inappropriate by the way. These are subjects which can be difficult to talk about, and it’s good that we can. It certainly makes me feel less alone see things from someone else’s perspective and realise that there is someone else out there with the same kinds of feeelings.

Sarah xx

Hi Sarah, thank you for telling me about your problems.

Ignore the following if you've had enough of me but I should have mentioned  but omitted it for space that currently I do my matwork on my bed every morning as getting back off the floor can be dodgy - knees are sore  plus I'm not allowed to put bodyweight on my right arm -  aneurysm in the shoulder since the cancer. Not all bad news - they've forbidden 'violent movements" eg scrubbing floors!

We also used to do the matwork at my teacher's studio iusing the reformer 'carriage' which was padded and at least a couple of feet off the ground (depending on make).

I can't do everything on the bed but muscles in my core and arms and legs are slowly getting stronger which helps my mood.

Bone on bone is hellish. I hope some day they may be able to help you. For example, people are now having joint replacements (including hips) using sedation rather than GA. It worked for my husband's knee - he was a bit scared beforehand but would do his other knee if needed. He's over 80 and had a heart attack plus triple bypass while I was having the cystectomy so they preferred not to knock him out.

I think they probably  resurfaced my hip using metal too during my replacement as the titanium ball they stuck into my femur would otherwise  have worn the pelvis bone down. My hip was 10 years ago so GA. 

Maybe you could get a second opinion?

All the best,

Latestart

Morning Latestart 

I’m always appreciative of advice and suggestions from others, so not at all fed up of you! Indeed the fact you do your mat work on your bed was particularly revealing-I hadn’t thought of that but what a good idea. 

The exercises my physio gave me after my stroke were varied and a number are designed to be completed on my bed, which is what I do. I think I could certainly extend this to include core specific exercises.

My situation has improved from where I was a year ago in that I have managed to reduce the amount of prescribed painkillers I need to take which I’m very happy about. I would like now to increase my mobility as much as I’m possibly able to, within my limitations, and I think I can do that. Not exercising due to pain, and pain caused by exercising can be quite the vicious circle for me.

My surgeon when I researched him is an extremely well respected and skilled chap so I haven’t sought another opinion. Without my co morbidities he would have definitely put me forward for surgery. It’s amazing your husband did his knee replacement using sedation, but I would not be able to have this done. I have ptsd which revolves around specific triggers and I have undergone failed sedation with numerous procedures and surgeries in the past which now means I cannot consider it. It’s a complex situation, which goes beyond simply being scared to undergo a procedure. 

It took time for me to consider the hip replacement surgery, and of course now that option is not there. The surgeon warned that if I didn’t die on the table, I had an unacceptably high chance of dying in the 5 days post op. He had seen this happen with a previously healthy patient who died with a sudden clot.

I nearly died when I had my pulmonary embolism, so I absolutely cannot put myself at extra risk of that happening again. I remember the doctor when I was taken to hospital with the embolism shaking his head and saying “I cannot understand how you are still here- this should have killed you”. I saw my scan results and was also amazed! 

I understand that I need to help myself, so I’m going to dust off my chair yoga book and start those exercises too. Anything which could increase my flexibility and therefore my mobility can only be a good thing. 

Your advice and suggestions are welcome, Latestart, and appreciated-thank you.

Sarah xx

Good morning, Sarah. 

Thank you so much for the link and your kind, supportive words.

I've read two pages of the thread you linked and will read the rest today. It was interesting to see you explaining that your situation regarding this issue was not going to improve. I've had to do the same with friends who can't quite get their heads around the finality of it all. 

And that really is the problem - the finality. We can all go a day, a week, a month and so on, without making love but knowing you'll never do it again puts a whole new perspective on the issue.

There's a certain irony to my position. When I was first diagnosed, before I knew if it was treatable, I promised my wife that I would never leave her voluntarily and I stood by that promise. I was offered palliative care a few times but always turned it down in favour of the, usually more gruelling, option that might give me hope.

The irony, as I see it, is that the man that made that promise went away anyway and what's left in his place is a pale imitation of what once was.

Not just the sex thing. I've changed in ways I could never have imagined. I played guitar to a reasonable standard, it was my thing. But the chemo has damaged my hands to the extent that I can no longer play. I tinkered with, restored and rode motorbikes. I can still ride but even basic maintenance is a struggle. And, I don't like beer! That one really took me by surprise. I always loved a cold pint on a hot day, but not anymore.

Having said all this, I know it's very early days for me. I'm barely three months post surgery. I'm hopeful that some things will improve or come back to me. But I also know that I have to get used to the new me. I just hope my wife can love me as much as the man she married.

Thanks for listening/reading. Until now, everything I've said has just been thoughts rattling around in my head. It feels good to let them out.

If I can progress with just a fraction of your courage and determination (I've read your bio) I reckon I'll be ok.

Dom. X

Hi Wurble,

I've been thinking about what you have said about not being the man you used to be. Somewhere on this site there are resources that may help. The first that seems  useful is a booklet called Life after Cancer that you can download. It covers everything from work to sex life. I wish I had looked at it myself in the early days though I've now reached my own accommodation as a survivor of cancer. 

There is another item that I can't find just now, a sort of essay written by a doctor about how it feels to be a survivor. I downloaded it ages ago but can't recall the man's name. The main burden is that at each stage of having and getting through cancer there are many physical and emotional feelings, including of loss, which are normal but often unexpected. Especially as we are all supposed to be elated by having reached 'the end'.

I did read that and found it helpful, maybe someone else on here can give us the citation.

I have learnt how differently we all regard this illness. For example the only time I cried was not on diagnosis or pain but waking in the night long after the operation feeling miserable because there were things I would never be able to do again. I reminded myself that in my 70s it was hardly surprising and that there many things I can still do. And more to try as well.

Maybe because we go through menopause, women are more accustomed to the idea of major life change?

I don't talk about being positive - but aim for optimism. Years ago I read a very good book by an American writer - Barbara Ehrenreich called 'Smile or Die'. She had breast cancer and said so many people ordered her to think positively that it sounded like if she did have a recurrence it could only be because she 'hadn't been positive enough'.

Black humour also works for me.

Finally, having been married for over 50 years and facing his cancer, my cancer, heart attacks, other serious illness,  war, migration... I can tell you that there are many ways your wife knows you love her. I'm certain she will still feel the same regardless of what has happened.

I know how my husband feels about me when he  massages my lower legs and feet every morning to help counteract the peripheral neuropathy after immunotherapy. (His own idea, and it seems to help.)

I hope some of this is helpful.

All the best,

Latestart

Hi Latestart 

I know the paper you’re referring to by Dr Peter Harvey, having read it often myself so I’ll pop the link here.

After the treatment finishes, then what?

Thanks for the reminder!

Sarah xx

Thanks I hoped you'd remember it