I have reoccurance womb cancer and after more chemo I've been booked in for a total pelvic exenteration 5th Feb. I would love some support and advice from leadies who have been through this massive life changing operation. Thank You.
1 Like
Hi Jannet.
There are several of us here who have had the total pelvic exenteration. I am eight months on from mine and feeling good. In fact I'm just back from my 45 minute walk around the village which I do every evening.. that is, the evenings when I'm not out dancing !
I'm not making light of it, it is a huge operation but it will only change your life as much as you let it. The bags require a bit more forethought and planning but it will become the new normal.
The fact that you have been offered this operation means that they think there is a really good chance of a cure .
Karen (petesdragon) is five months ahead of me and really helped me through.
Feel free to message me or just chat on here with any concerns you have.
xx Sue
2 Likes
Hi Jannet
There a lot of posts on the advanced side of the forum about an exenteration so you should join.
I had the operation in July 2016. It’s a massive op but so worth it for the chance of a cure. You do get used to the bags and they don’t stop you doing the things you love.
Allow yourself 6-12 months for total recovery and I really mean that. Everyone has ups and downs after the op, you may take one step forward and two back but you will get there.
You will get lots of tips and advice from people on here. Come on as much or little as you need/want to before, during, after...we can help.
Love Cara xx
Hi Janet,
We have spoken before! Congratulations you are a suitable candidate for exenteration. I know that sounds a bit fickle but honestly it's really good news, you have real hope now.
The operation iitself is really challenging so you do need to get your Boxing gloves and get ready for a really big fight. But you do get over that in time. Then there is the whole body adjustment thing and new way of life but it's all doable. I read loads of research papers and I knew it takes a full year to recover. I mentally prepared myself for 12 months of misery in order to earn future years but after the first few weeks things were way better than I imagined. I improved by tiny steps each day and in the end went on five holidays and no end of other expeditions all in the first year. You can do this too!
There are several women who have had exenteration here. All of us are phenomenal women (much like yourself I am sure) and we will get you through this!
Karen x
Thanks both of you. I try to be positive and upbeat and need people like you. I love to dance!! How do I get to the advanced forum plese?
I've registered for the advanced forum!! I get the idea that my hope of using my Glastonbury tickets in June may be optimistic!
Glastonbury is a huge festival . You might be up for it in four months, but you will have to see how you feel. Would you be in a tent or campervan ?
I was at a small festival at eight weeks but it was local and I had the luxury of our campervan and facilities. I've carried on to do 4 more since then and we have hopefully 12 to attend this year.
Take each day as it comes, slow and steady improvement and a gradual return to fitness.
Hi Jannet,
Keep the Glastonbury tickets!! By June you’ll be four months post op and chances are you’ll be ready for adventures and treats. It’ll give you something to look forward to and aim for and with a bit of planning there’s no reason at all why you shouldn’t be wallowing in the mud with the best of them. Maybe just pencil yourself a few days in bed afterwards to recover but hey, who doesn’t need recovery time after Glastonbury!?!
I had the exenteration in July and there’s no denying that it’s a tough road to recovery in the initial stages. However, the fact that they are doing the op at all means that they think that it’s going to be a success both in terms of removing the cancer and giving you a good quality of life afterwards. So grit your teeth and think of Glastonbury!! By then you will be feeling so much better and progress will be in leaps and bounds!
There’s loads of support in the advanced forum (see you there) and please don’t hesitate to pm any time.
Best wishes xxx
Oh and Jannett...
All of us who have replied are in touch just about every single day. I have met all of them and their partners in person. I have even been inside Sue's campervan! We share almost identical issues, squabble over which medical products are best and share diet tips. In other words you make great new friends too!
You will go to Glastonbury and you will learn to love your bags there! I have just come back from a holiday with my sister and while she was nearly chucking up over some disgusting toilets I was emptying my wee bag behind a tree in the sunshine! Perfect for Glastonbury!
Yes, do message any of us.
Karen x
Ps Have you had any discussions about reconstruction of the lady garden?
Thanks to you all. I'm "Glamping " at Glastonbury - it's my husband's 70th!! and this is his birthday wish. Yestrerday I realised I was more terrified that they would say they couldn't do the operation than I was of the operation! Too much to live for. This sounds like the group for me. xx
I've been married for 45 years am 68 and the reconstruction isn't an issue! Ha ha.
1 Like
Yes Janette, I did say to another person that you start praying that you can have all your organs whipped out. That's why I congratulated you - I knew you would get it.
You and Sue are going to get on like a house on fire. She too is in her sixties and into campervans, dancing and festivals. Also with a chap in the next decade. She has been absolutely amazing. She hasn't let any of this stand between her and her lifestyle .
Karen x
I've not heard anything from the advanced forum about being anle to access it. I've checked my spam. Does generally take a while??
I've still not heard about the advanced forum but had a message to say they'll get onto it.
Meanwhile PLease could I have some advice about what to take into hospital , the best things to wear there and what sort of clothes would be good for afterwards ?? I'm sort of assuming jeans are out of the question especially at first. And also where's the best places to site the stomas?? I've got an appointment to see the nurse about this.
THANK YOU>
Jannet. xx
Hi Jannet. The stoma nurse will see what knickers you wear, and where you like the waistband of clothes. She will draw on you with a marker pen where she thinks the stomas will be most comfortable. That is just a guide for the surgeons though as they will site them where it works best, but that will be close to the nurses marks.
Hospital will provide nightdress type thing for the first few days. It's up to you if you want to take comfortable ones for later. Loose is best. I went for a long nightie rather than pj's Toiletries for nurses to use at first and for when you can get up and wash or shower. Baby wipes work well when you need a refresh.
Coming home.. have you got far to go ? It will be uncomfortable so the loosest clothing you have will stop chafing on your scar. I spent the first few weeks in flowing maxi dresses and nothing else !
xx Sue
All Sue said but take dry shampoo too. You will be very frail at first with tubes sticking out all over so you will need bedside care.
It may be an.option to have one stoma called the Carter operation. Both outputs go into one bag so if this appeals it may be worth asking if your surgeons do this.
Your husband will need to care for you at home at first so make sure he too is in peak physical condition!
Karen x
I am so happy to have found this group! I have been searching for other women to talk to about an upcoming Pelvic Exenteration and haven't found anything in Canada where I live.
Will you allow me to participate and ask some questions?
Thanks
Hello IamJay.
I’ve had a pelvic exenteration and am happy to help you out with any questions if I can. Also, if you are interested, I run a private Facebook group specifically for ladies who have had this surgery or are facing it. I have ladies from Canada there who I know would love to meet you. It’s a very active group and very private. If you’d like to join us, please send me a message and I’ll tell you how to do it. We are very chatty and have lots of knowledge and advice between us to help support you. I know one of my Canadian friends mentioned how difficult it was for her to find other contacts in Canada, so she would love it if we had another Canadian! I hope to hear from you soon.
Hello lilypingu
i cant seem to reply via private message....
i am interested in your Facebook group, is there a way that you can share the information with me?
thanks
Hi Jay
I tried sending you a private message earlier today-can you check if you have a notification for that and can see it? I’ll try sending you another message about the group-it is hidden on Facebook so I can’t share the details on here, unfortunately, but can tell you how you can join in a private message.
