Stage 4 out of the blue

No, but the poster John does, so I was replying to him. 

Sarah xx

Yes, I can understand your anger at what’s happened. And I also understand how you are feeling after the surgery you’ve had. When you read my story you’ll see I can understand that after my own surgery.

It takes time to process what you’ve been told today, especially when it was done over the phone-it must have been such a huge shock. You haven’t said what stage your cancer was when you were diagnosed but it does sound unusual to have the other surgery after a hysterectomy, so I’ve not heard of that before-my surgery only happened when my cancer recurred. 

It’s difficult to pull yourself up when you fall into a pit of despair and can’t see a way out, but hopefully your testing will show you can be a candidate for chemo and/or immunotherapy. The waiting to know more is very tough to get through however.

The Macmillan support line (the number is in my signature) is there for you if you want to call-they are good listeners and may be able to direct you to other sources of support too. I’m around in the group every day and always happy to talk with you.

Sarah xx

Ahh..OK. I'm struggling  a but to fully understand this site ect.. I read your story,  I'm so sorry,  it gives me a glimmer of hope and determination.  I'm so angry that I was treated incorrectly at the beginning,  angry that my 'then husband ' of 26yrs ajd 2 children had an affair and didn't find me 'attractive ' anymore..well..I had no vagina did I? I'm angry that I felt so unattractive and vulnerable I fell for the 1st ?man? Who said it didn't matter to him ..he turned out to be the biggest conman, violent money grabbing thug..I'm angry I let myself be so vulnerable and needy. I'm angry when I listen to 'normal ' moan about not wanting sex and how they could quite happily go without it  ( I guess I would be like that if I wasn't in my position, but when you can't be normal you crave to be normal) and now I'm angry that after 15byears of this rubbish, nit still continues and Continues to get worse. 

It can take a bit of time to get used to the site and find your way around but you’ll get there. 

You know, none of this is your fault or my fault-it’s just the hand we’ve been dealt and need to cope with. Some might say I’m not normal either, but I don’t let my cancer or my surgery define who I am as a person. I’m blessed to be married to someone who wants to be with me no matter what body parts I had to lose to still be here! It is better than the alternative.

I wasn’t ever angry about what I had to go through, I was sad, and I do still grieve what I lost-I think that’s quite a normal reaction so I accept those feelings. But I never wanted to spend my time being angry about things I couldn’t change, as my focus has always been to try to maintain as positive a mindset when possible to help me get through. Not always possible, and there are times I’ve been very afraid, and very down. I have had counselling to try and help with that and that’s been very useful. 

Sarah xx

My camcer started with a dodgy smear,  which by the time I saw the surgeon/gyne doctor  he said it had turned into a 'carcinoma in situ' and that a radical hysterectomy would sort it out. I was studying an access course at the time to become an ODP  (akin to a theatre nurse) he said it would all be overnight a few weeks and I could continue my studies.  After that operation,  I went.for the checkup  ajd he was horrified that the staining  cin 3 cells every where.  He then did another op to cut out (stamp) the worst area amd that again..all would be fine, inwoke up to find he had cut out all of my vagina as when  he stained it again  it was completely covered.  I had no say in the matter,  I then asked about  a reconstruction,  he referred me to the royal marsden  who said he had treated me wrongly and had actually been spreading it by the way he had performed the surgery. 

They said I should have had no surgery,  but should have had immunotherapy instead. 

Was referred to a.leading London hospital  to a chap who specialises in reconstructions. Well, that was a bigger cock-up than the original surgeon,  between  the specialist and the plastic surgeon,  they didn't read my scans properly and underestimated the scar tissue,  and proceeded to tesr open my bladder and bowel and tei3d to stitch up the holes (after.making me a new vagina out of skin and bowel grafts. 24 hours later  I was on a life support and having the rotting new vagina removed as the leaming bladder had rotted it. 

Cue, my husband having an affair whilst I was left with 2 children,  an elderly mother living with me who had dementia and parkinsons and one of my brothers dying. Managed to survive all that, and had 15 yrs of some crappie years and a few good times,  but mainly crappie...only to get this dumped on me today.  I'm so angry,  so frightened and so fed up and very sad. Sorry to go on , believe it or not, I rarely talk about it. 

Oh my goodness, your story is horrific-I’m so sorry you had to go through all of that. Please don’t apologise for going on-it’s good to talk to someone who has some understanding of what this is like, though I was very lucky to be treated by very good doctors and surgeons. I’ve only told a couple of people what my surgery involved so most people I know have absolutely no idea. Sometimes I have to bite my tongue if friends are moaning about trivial things! 

You sound like you’ve been incredibly strong in all the things you’ve had to go through, with your own situation and your family-I admire your strength in keeping going. I hope you can manage to find some of that strength once more to face what’s next, though it’s desperately unfair that you have to. 

Sarah xx

And that's my problem now, I fell I ahve no more fight left in me, I've had to fight most of my life and I'm tired of it. I'm so angry at life,  I 'survive ' all that, listen to people prattle on about how 'lucky ' I am that I survived 'cancer and should 'think myself  fortunate that I survived  (many don't you know?) Whilst they have absolutely NO  idea what I went through and continue to go through..and then listen to the many lectures about how should move on and find someone ' whilst not knowing that I have no vagina,  suffer from incontinence, amd tried dating,  only to find  (after plucking up courage to tell them of my situation) to be laughed at ajd ghosted..I don't care about  a partner now, even though life is geared up for partners  amd sex,  I cared about seeing my children grow and prospere.  I won't even get that luxury now. I listen to daily lectures from people and adverts about 'how to look good ajd keep yiur man happy,  wear this,  buy that, go on a diet..it's like a torment every day, but I coped,  but yhe today,...this drops on me. I just can't cope. I really can't. 

I’ve had the “you’re so lucky to be here” comments too, from people who have no idea, but I think it can be hard for people to know what to say when you have cancer and they think they’re cheering you up, and being positive. I understand I’m lucky to be here, but don’t need to have others tell me.

have you ever had any type of counselling? You have been holding onto so much anger and such a feeling of injustice for so long that it might be beneficial to talk with someone to find a way to acceptance, especially now,

It’s amazing what we cope with, and what we can learn to cope with if we get some help. I wasn’t given a new stage officially when my cancer recurred, but it was treated as being stage 4. I decided not to focus on a number, because it was only a number and how I responded to my surgery was the most important thing. I didn’t want to give up without giving things my best shot-I have adult children too, and like you I wanted to see them prosper. I’ve seen two engagements, one marriage and a granddaughter now. 

You sound simply overwhelmed right now after your news, but there will be a plan, no matter what that is. On a practical level, you mentioned incontinence-are you getting any help with that? Keep talking to try and find your way through this. At times I’ve wanted to give up, but I never did-there was always a little voice in the back of my head telling me to keep going. You feel beaten down completely after your shocking news, but give yourself time to regroup, feel sorry for yourself and then try to start to deal with what’s happened and will happen next. 

Treatments have come on a long way since you had your surgery, and are very different now, so trust in your doctors to give you the best plan possible to help you. You’ve had to deal with more than most people could imagine so far, and got through every day up till now- and this is yet another thing to cope with.

My partner tells me focus on what I have, not what I don’t have and that’s sometimes hard to do, but I try. One foot in front of the other, sometimes taking things just an hour at a time if things seem overwhelming. I’m disabled, completely housebound and on my own all day, every day. I never thought my life would turn out like this, but it has and I have accepted that. It doesn’t mean I’m not envious of others when I see people walking outside and I can’t even get into my garden on a lovely day like today. But it doesn’t do me any good to dwell on what I can’t do. We are bombarded by adverts telling us how we should look, what we should be doing but I let that wash over me and don’t think about it because none of it relates to my world. 

I hope you’ve managed to get some sleep last night-I know it will be hard right now.

Sarah xx

Hi, slept a little. No, never was offered any type of help or counselling.  Even at the time when he cut out ny vagina (without my knowledge,  consent  and totally unnecessarily) was I ever offered anything.  Not even from Macmillan 

My gp contacted Macmillan once and they told her they were too busy to help me amd as ny cancer had 'gone' I didn't come under them.  You couldn't make it up tbh, I had nontime back then for Macmillan,  so hoping it will be better this time round.   Tried counselling,  but they said my mh was so bad that the 6 sessions they could offer me would probably make me worse. So I've learnt to bury things. X

I didn’t get any help offered either after my surgery-it was like I was supposed to be better now and just get on with things. After a year my mental health was very bad, so I had the standard 6 sessions of counselling via Macmillan /BUPA which did help. Unfortunately that service has now been discontinued, but I had to beg my surgeon do complete a referral-she was surprised I needed any help. Seriously? 

I had a stroke last year and had a complete meltdown in the hospital about the lack of support of any kind since 2020. I wasn’t even making sense as my speech was so jumbled and I couldn’t get my words out, but I was finally heard by some very compassionate staff.

I was immediately referred for counselling, which started quite soon after, and I had this weekly by phone initially and then on video call for 8-9 months. This was way better than the standard 6 sessions for me. I’m not sure how 6 weeks will fix anyone, but I suppose it’s a start! This was all on the NHS, and I’ve been told that I can go back at any time if I need help again. 

I’d recommend going to have a chat with your gp if you can face it, rather than waiting until you see about your cancer treatment. You should have help with the mental side of this in addition to the physical and you sound desperately in need of help-you can’t always do this alone. I think you need to be very honest and tell them how this is making you feel, and it’s clearly been an ongoing issue for you. I appreciate you haven’t felt heard or helped in the past, but please speak up now. In the meantime, the support line is there, and the Samaritans if you need someone to talk to.

Sarah xx