Check-up yesterday (blood & babies mentioned)

Hello everyone, 

Yesterday I went to see my consultant. I had a radical hysterectomy on 1st November for 1a2 adenocarcinoma and physically, recovered relatively well from it, got the all-clear a couple of weeks later and got back to driving at 7 weeks, etc etc.. The past two weeks I've been getting bad pelvic pain and pain down my leg, as well as some pain in my vagina. My bowel has never recovered from the op either. These symptoms weren't going away, so rather than wait until my check-up in April, I rang my cancer nurse who spoke to my consultant, who thought it was best to get me in for a 'thorough going over'. 

Anyway, thankfully everything is fine in the sense that he is very happy that this is not cancer-related and that I'm still clear of cancer. I have a vaginal prolapse. I also had some scar tissue at the top of my vagina, which he removed there and then (that was grim - not radical-hysterectomy-grim, but still grim, and I'm sick of having my bits mucked about with). I also have adhesions and the surgery has given me irritable bowel syndrome. He's given me some things I can do that might help - only time will tell - there is a possibility that I will just have to put up with the pain for the rest of my life. It's a very strange feeling to be so pleased to be told you might have to put up with pain for the rest of your life - I don't care, I can deal with that, as long as it's not cancer! 

I saw my gynaecologist in his general gynae clinic, rather than his gynae-oncology clinic. This was good because it meant he could see me sooner, but it was difficult as well because it meant I was surrounded by pregnant women, which I found really hard. Anything to do with pregnancy or babies at the moment I just find so upsetting. 

After the hospital, my husband and I went for coffee at my favourite coffee shop. Before we got our coffee, I popped to the loo. When I looked down, I saw blood in my knickers. I have often thought since my rad. hyst. what it would be like to see blood in my knickers again. It became both the thing I most longed for (because I'm grieving for my menstrual cycle) and the thing I most feared (because it would probably mean the cancer was back). I have often thought that I would not be able to cope if it happened because of the fear associated with it. And of course, that could still be the case - the blood I saw yesterday was spotting from the procedure I'd had to remove the scar tissue at the top of my vagina, and I knew that, so I knew it was 'safe'. Seeing blood there again was both devastating and lovely - like hearing a song from another life, playing in the distance. My periods are from another life - my life before I had cancer - every month for 25 years and then all of a sudden, never again. They were painful, sometimes inconvenient, but oh my goodness, how I miss them, and how much grief there is for them. 

I suppose I wanted to post on here today because people who haven't been there have a tendancy to think it's all over once you get the all-clear, and of course, nothing could be further from the truth really. I am feeling teary and delicate today, as well as overwhelmingly relieved and happy. 



Hi Annabel,

are you ok?  Gosh its such an emotional rollercoaster isn't it?! I feel the same a you in lots of ways.  I'm not yet at all clear stage but the worries are there about whether I get good or bad news and even when I get the good news, although I will be soooo happy I know that its always there at the back of my mind and I'm not sure life can ever be the same again. As you say, people think you have the all clear and so you should be "back to normal".  Your body has been though so much Annabel and you are still affected and still adjusting.  I've seen many of your posts to other ladies and you have a wonderful wy with words which helps re-assure others and now you need to turn that attention back to yourself.  Through all this I have learned that I can only deal with one hurdle at a time so I can give it my full attention and strength.  I also think that by being so positive most of the time can sometimes work against you as family and friends then worry if you have an off day or if you are a little bit quiet and thoughtful.  Its a relief to talk to others who just understand 100% but thats not to take anything away from all our lovely family and friends as its also so hard for them. I am tired at the moment but planning to visit my mum and dad with my boys over half term but haven't wanted to let them see my vulnerable side too much so far so will find it even more exhausting to be upbeat all the time and I think the mask is starting to slip.  Then there's the grief you feel....for your body and the way it was and for the way you were emotionally.  Its absolutely massive.  What I suppose I'm trying to say in  really long winded way is dont be scared to feel sad or cry...remember hormones will be playing a big part too! I hope I've helped you a little, writing it down has certainly helped me as can identify with you on so many level.

Take it easy and hope you feel physically better soon and that the pain is controlled etc.  The rest will come, it'll just take time I expect


Love and hugs 



Annabel and Andea

Reading your posts is like reading my mind!

Its not that we are not happy we have had successful treatment but more the fact our lives have most certainly changed forever. The days of being carefree seem to be over and we have to adjust to a new normal- easier said than done.

I think i made the mistake of focussing on op to get rid  and then planned to draw a line under it an move on.....

There is no reason at present why I can't do that and all my family are so relieved but i have an awful sense of doom:( Wish i could shake it off but i hope it lessens with time.) Maybe thats grief too Annabel?

Wherever we all are  on the path with this cruel disease its so comforting to know i am not the grim reaper and others feel the same way  when my sensible head is telling me to be grateful for the best outcome possible at present

Best wishes

Kath xx

I think it's very difficult to talk about being grateful when you've been presented with a threat to your life through no fault of your own. Other people definitely think you should be grateful and because you've got the all-clear they seem to see it as you having 'gained' something (you've 'gained' not dying of cancer, in their eyes), but I just don't think it's like that. It's certainly not for me, anyway. I don't blame people for not understanding because I know that when I look back to life before cancer, I could never have imagined so many of the things I have felt, so I can't really expect people to understand who haven't been through it. Sometimes I tell them and, very close friends ask me to tell them because they're completely aware that they don't 'get' it, but they want to try and understand as much as they can and as they've pointed out, they won't know unless I tell them! Like I've said before, there is a lot of loss involved, even when you get a good clinical outcome. It certainly sounds to me like you're grieving, Kath. And why wouldn't you be? You've been through so much and this is a really really hard thing. Society tells us that grief is only connected to dying and we are sold ideas of certainties in life - of ultimate control over our own lives - and when you get cancer, all of those things are challenged and you have to adjust to the realisation that actually, life isn't like that at all. As you say, Andrea, you can never go back to the person you were before - that was a person who had never had cancer.  

I have been very lucky in lots of ways - it was found early, it was contained and so clinically could be dealt with 'easily', I had a really excellent surgeon, it's very unlikely to recur, I have an amazing support network around me including lots of lovely lovely friends and a gorgeous (and endlessly patient!) husband and daughter and remarkably (considering how rare this cancer now is in general population) I happen to be friends with someone who not only had cc eight years ago and had to have a rad. hyst. (and was very involved in Jo's Trust years ago - she's the one who pointed me in this direction) but who is a medical scientist, so has been an amazing person to have around throughout all this. I am also, of course, hugely relieved about my clinical outcome. But I'm still not skipping through meadows without a care in the world ;-) Cancer is a really hard journey to take, however long or short and whatever the outcome, and I think we should all be kind, gentle and patient with ourselves and recognise it will take time to come to terms with having had a hurricane pass through our bodies. 

The more I'm on this forum, the more I think it's an amazing place. Cancer can be very isolating, emotionally. Having somewhere like this makes a bit less so, and that's very valuable. 

Much love, 

Annabel. xx

Hi Annabel,

so much of what you said rings true for me too. I am grieving. Grieving for the loss of my uterus and with it the chance to have a family.

I reached my 2 year all clear recently. Everyone assumes I'm happy about it and its something to celebrate. But it's not. Of course I'm happy not to have cancer anymore, but each anniversary is a cruel reminder of what I've lost. So I grieve again.

Cancer shattered me into pieces, I've managed to put the pieces back together with the support of my lovely family and friends, but there's one piece that will always be missing. Fiona x

Hi Fiona, 

Thanks so much for your honesty. Whichever way you look at it, having cancer is rubbish. Before my operation, I had people saying things to me like, 'You won't have to put up with your periods anymore - how brilliant!' and even my surgeon said to me two days after the op, 'The op went really well, and you haven't got the inconvenience of periods anymore!' I don't for a second think anyone was deliberately being insensitive or unfeeling, and I think it has a lot to do with their own difficulty in you having to go through something so awful, but the idea that there can be some sort of 'cancer bonus' is just absurd. If it had been my choice, then that would have been completely different but, like you, I didn't want to have the operation, but I had to have it so that I didn't die of cancer. I'm relieved and pleased that they could save me and protect my future, of course, but it was an utterly shit situation to be in. 

I'm so pleased you've had your two year all-clear and I'm so glad that you have lovely family and friends around you to help you and support you, and it sounds like you've managed to make some areas of your life how you would like it to be. Like you say, it will always be there but, it's a massive life event that changes you forever, so how could it not always be there in some way. 

One of the great things about a place like this is that now we both know we're not the only ones who feel like that. That helps in some way, I think.

Annabel. x

Hi Girls,

Just wanted to say I so agree with what you have been saying. I had a total hysterectomy on the 4th Dec (1a1) and although I have had the "all clear" it doesn't feel like it to me. Of course as you say I 'm happy about that but I am certainly not skipping around with joy. This whole experience has changed me deeply and I think I am trying to work out a new normal for me as it's definitely not the same as it was before the diagnosis. I found the Hystersisters great in many respects but felt I was odd/strange for not being over joyed my periods were over. Now I know I'm not on my own, cancer is different. I think it changes you in so many ways and on so many levels.

Thank you for being so honest and sharing your feelings in this public way I know I for one am very grateful.


Thanks, Stargazing, I'm glad it's helped in some way. 

I think you're right - because quite a few women have hysterectomies these days, for various reasons connected with periods, you find that people find it really hard to understand why you wouldn't be pleased to be shot of your monthly cycle. It's the element of choice that makes the difference, in my opinion. I have a friend who had hideous, nightmareish periods that were a blight on her life. Eventually, about a year ago, she had a hysterectomy. For her, this was a choice - almost a lifestyle choice - that she had time to make the decision to do, that was completely and utterly her choice and had no health implications whatsoever. If she'd had a wobble the night before and changed her mind, it would have annoyed a few medical people, but would have no greater implications than that.

I had no plans to have a hysterectomy. Then, within the space of two months I'd had an abnormal smear result, a colposcopy and biopsy, a cancer diagnosis, a radical hysterectomy and the all-clear! That's a bit of a head-mess!! I did not want to have the operation, but if I didn't, I would have died - it was as simple as that. Having a hysterectomy because of cancer is completely different from having one in those other kinds of situations and brings up some very hard feelings and a grieving process - you're definitely not on your own in your feelings. I think you're right as well, it does change you in so many ways. It's three months since I had my rad. hyst. and I am aware that having cancer has changed many things about me. I am sure I will look back in a couple of years and realise that it had changed even more things that I hadn't even realised yet. 

Annabel. x