Hi All

needing to vent..........feeling very stressed, worried, down today, I think the reality of everything is hitting home, starting to think all sorts and wondering if this ache or that ache or this itch or that itch is something to be concerned about. Feeling very stressed over my surgeries, mainly the removel of the lymph nodes, this seems like such a drastic surgery?? Wondering now if this is a secondary cancer or primary area, not yet had my smear done (about 10 months over due due to dealing with this issue) worrying over that now as I am wondering if there is a link between cervical cancers and vulvar cancers,  I have one of these am I likely to have the other?? having read some personal stories on the net (granted some were many years ago and science has come on leaps and bounds) but surgeries were similar and I feel even more desperate now...I have left a message for my assigned nurse to ring me as I need to ask all these questions so I hope she rings sooner rather than later...what a day to day is going to be!!

Hi shazza

I have not been on this site before but have followed it for the last 18 months when like yourself I was diagnosed with cancer of the vulva stage 1, on seeing your message I had to register to try and reassure you , knowing exactly how you are feeling at this time. On being diagnosed I had an MRI scan and then was referred to a Gyno surgeon who Operated three weeks later, I had a partial vulvectomy with removal of all my lymph nodes in both sides of my groin, they were sent of for a biopsy and to my relief they all came back clear although my surgeon told me after my op that he didnt see any sign of any cancer when he removed them which reassured me straight away. Op was pretty straight forward with 4 days in hosp, but I was off work for about 10 weeks , the healing process takes quite awhile, uncomfortable at first but not too bad, the lymph node removal I found was the most uncomfortable where the fluid took awhile to drain away, the best part was knowing that there was no cancer so anything else was easy to put up with, I was checked at the hospital every 3 months for the first year and now I am on the 4 monthly check, I have slight lymphodema due to the lymph node removal but I can cope with that , just knowing that it could have been so much worse, so many people on theses forums have such sad stories that I feel I am so lucky. Hope I have reassured you a bit and you can begin to to feel a bit more positive, it is quite a rare form of cancer and there is very little information , feel free to ask me anything if you wish to.

Take care

Hi Poppy

Hope you are keeping well Poppy. I am trying to cope, last night was not a good night, I just cried and cried in bed, feel a little better today, I have my pap smear to look forward to ....I am not sure why I did not have a MRI?? I did have a chest x-ray and 3 lots of blood tests, ECG and pre op prep (MRSA, finger jab etc). I am trying to not think about things too much, went into work yesterday, going in thursday and part friday to tie up some loose ends etc, I am finding it hard to stay focused but it is a welcome distraction of sorts...

I did ask about having the two procedures together and although it can be done they wanted to do them as separate procedures? frustrating, as it dramatically increases my physical recovery times. I just have to trust their judgement and decision.

I have discussed options with my HR team and I will cross that road when I get there, I am fortunate in that I have a very supportive manager and that is some comfort.

Stay well Poppy and thanks for writing, this site has been a blessing for me, it is so nice to chat to you all and I do look forward to catching up with everyone

Take care and chat soon xx

Hi shazza

Just want to say I will be thinking of you on Monday when you go in for your op, do let us know how you are when you are able to, hopefully your stay will not be too long in hospital, it is a lot better recovery when you are at home and make the most of having someone look after you. You deserve it after everything you Are going through.

Speak soon, take care xx

Hi Shazza,

It's Annabel here. Just letting you know that I am thinking of you and will be mentally holding your hand through your op. I can't belief that I am a week post op now. Time fly as they say. How long are you expecting to be in hospital, do you know? Let us know how you are when you get home. Best wishes Shazza.

Annabel. xxxxx

Hi Annabel

How are you feeling? I hope your surgery went as well as could be expected? Glad you feel well enough to visit us

I'm doing OK, up and down days, as to be expected I guess. Just want to get my surgery over and done with now, They said that I would be in for +- 4 days on the first surgery, not sure how long for the 2nd? (I think they mentioned about 4 days for that one too).

Please let me know how you are etc and thank you for thinking of me considering you should be resting!!! look forward to chatting and hope you are OK. xxx

Hi Poppy

Thank you, I plan to take my ipad lol.....hopefully we can chat whilst i am in hospital! Surgery is Tuesday, although I wish it were Monday, just want to get it all going now. Hope you are ok and thanks for your thoughts.

I have a question so please ladies if you can answer, much appreciated. Can SCC be present in more than one area of the vulva? I am not sure if it is my mind but I seem to be developing an itch elsewhere (up towards the clitoris) not painful urinating, skin appears fine but i am 'aware' of this sensation. (I am currently on my period so not sure if this has something to do with it?) comes and goes, not there 24/7, does not wake me up etc...panicking though

Sigh....

xxx

Hi shazza

Yes I am fine thank you. Sorry I got the day wrong, I wish it was Monday for you too, it will soon be here though and will soon be over with. Sorry I can't help you with your question, I honestly don't know but I think the mind can play tricks sometimes and until you have your op you will think and feel all sorts, it's only natural to feel like that, you visualise this horrible illness spreading everywhere but one of the pieces of information that I was givien was that this type of cancer is very slow growing, that was one consolation so please do try not to worry,and I know it's easier said than done but you need to try and stay as stress free as possible to help you, if you can ,phone your nurse for reassurance , that is why she is there. Will be thinking of your hubby as it will be very hard for him too, waiting.... I think I mentioned that my surgeon told me straight after my op that he didnt see any more signs of cancer although obviously biopsies were still done but it was very reassuring to hear that and I am sure it helped with my recovery .

I will be here to chat whenever you need to xx

Hi Poppy

I think I am slowly losing the plot LOL, Yes, I think it is quite possible that once your recieve the diagnosis you all of a sudeen feel sick and senses are heightened so everything is wrong all of a sudden!!  I did read somewhere that it is possible but a very small percentage of people diagnosed present with multiple scc. I will mention it to the surgeon though as there really is not much I can do about it now considering how close Tuesday is Hubby is coping well and I think he too just wants to get the surgery done and start the treatments. He is going to keep himself busy buy doing some DIY whilst I am out of the house so I am sure he will be able to relieve some stress when he knocks the walls down I will ask my surgeon prior to surgery to let me know after his opinion and how it went, scary thought if they find anything else though...but I will have to face it regardless. I wish I could put all you ladies in my overnight bag and take you with me LOL!!!!

Hope you are keeping well Poppy and managing to get your feet up! xxx 

Hi Shazza,

I don't know about vulval itching but the moment I was told I had cancer I got all sorts of aches and pains. The days before I had nothing.  The oncology nurse said that was very normal. Well I am glad I am normal at something LOL. I think you are just going through that period of hightened awareness. One of my best friends suggested we play words on facebook. That has been brilliant for me, I now play my daughter ,my friend and my husband who is in the other room. How sad are we?, but I don't care. I shall watch out for you when you come back online and if you fancy a game contact me through the moderaters, will let you have email etc. All the best

Annabel.xxxxx

Hi Annabel

Yes online words sounds like a great idea! I will ask the moderators to connect us via email etc. I will no doubt be following suit in texting / messaging kids / hubby in next room, ha ha ha.

Chat soon and hope your recovery goes well. xxx

Hello Annabel and Shazza40,

How nice that you have so much in common and want to talk and play online words in private!

We do have a private messaging facility which would enable you to communicate  privately with each other. All you and Annabel have to do is to request it-  If you would like to be able to send private messages,  please follow the instructions described here or just let me know and I will set it up for you. You can find out more about how to use private messaging in  our Cancer Chat tips here.

Best wishes,

Lucie, Cancer Chat Moderator

Hello Annabel and Shazza40,

How nice that you have so much in common and want to talk and play online words in private!

We do have a private messaging facility which would enable you to communicate  privately with each other. All you and Annabel have to do is to request it-  If you would like to be able to send private messages,  please follow the instructions described here or just let me know and I will set it up for you. You can find out more about how to use private messaging in  our Cancer Chat tips here.

Best wishes,

Lucie, Cancer Chat Moderator

HI Lucie

Many Thanks for your assistance, please could you set it up for me.Thank you

Regards

Shazza

Hello shazza,

No problem I've now set it up for you! You won't be able to send a private message to Annabel until she herself requests it. So Annabel would you like it too?

Lucie

Thanks Lucie, I shall wait for Annabel to respond. Much appreciated xx

Yes please Lucie, that would be great. Annabel.

Hi Shazza

How are you feeling today ? Counting down the days now ? all I can say is think positive and take each day as it comes, enjoy this weekend with your family, times like that are precious, I don't think any of us realise how much these things mean to us until something comes along to threaten it.

Yes I manage to get my feet up when I can and on my days off from work I try and rest as much as I can which I found quite hard at first as I'm a bit of a busy bee , I like to be doing things but I soon learned that I had to slow down a bit else I would suffer, so now I do as I was told to!!!

Let me know how you are doing and I wish you a speedy recovery

Take care xx

Hi Lucie,

Yes please

Annabel.

Hi Poppy

Counting down the days , feeling very anxious about the outcome of the surgery, finished work today so hope to try and keep my mind busy till Tuesday, Trying to stay positive and for the most part it is working but as you know moments of despair come along and puts you right back at square 1.  I just pray that my surgery has a good outcome. I'm very agitated at the moment so I am finding it hard to enjoy quality time with the family which sounds terrible but I think once my 1st surgery is out of the way I will feel better. It's not actually the surgery that's on my mind it's all the what if's etc etc etc

I know what you mean about finding it hard to sit still, I plan to do as I am told for once though! I'm looking forward to some sleep and some good books after the op!! Well onwards and upwards as they say, bottle of wine in the fridge chilling so a few glasses tonight will help me relax. I will look out for you as soon as I can get online and thanks for the thought, hope you have a good weekend and chat soon. xxx

Hi Annabel,

Your private messaging is now enabled! Hope you and shazza enjoy it!

Lucie

Hi Poppy

Hope you are ok, just popping by to say hello. Hope you had a good weekend.

Take care x

Hi shazza

Hope your weekend wasn't too bad, I know how you were feeling, i still remember how i felt to the lead up to my op and it doesnt matter how many people tell you to try and  not to think about it, you do  and it's the thing  most central in your mind, hope you got through it ok, tomorrow is nearly here now so wanted to tell you I will be thinking of you and I hope everything will be ok with you, let us all know how you are when you can. Wishing you well soon

Take care xx