good questions

Hi rach1408 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hello Rach1408, I had a wide excision done in August 2022. Questions I suggest you ask are do they have any indication of the size of the tumour, if it is over 1mm they will have to remove the lymph nodes. How long will they be keeping you in after surgery. Due to having covid when I had my operation my tumour had grown and was 2.8mm so I had to have a second operation.  I was given advice from the Macmillan support worker at the hospital which was invaluable.  She recommended after surgery to not wear any underwear and to let the air get to the wound as much as possible.  I brought some nightdresses and when indoors or in the garden stayed in them (unless someone was visiting lol).  They advised walking as much as possible, so it was laps round the patio every hour and when I was on the ward I kept walking up and down.  I found it easiest wanthen I had a wee to use a hand held shower head and just rinse with that and then pat dry, I used the absorbent wipes that was in the ward toilet and purchased more from Amazon.  You do not have to rub just pat dry as you have to keep the area as dry as possible.  I would suggest to keep up with the walking and running if you feel upto it but would recommend putting the camping and van life on hold for the 6 weeks following surgery.  Small price to pay for a good recovery and then everything should be back to normal.  I must admit I have a excellent consultant and has really helped me,  Also my hospital and a compliementary medical department and that gave me a nasal inhaler for stress and it really calmed me down and I also had Rekki sessions which were amazing.  Another thing I went to a local cancer charity and had reflexology from them and this really helped  especially when I had my lymph nodes removed as I got lymphoma.  I had a special massage to help drain the fluid and they showed me how to do it myself.  When I went back to my consultant he was advised that my golf ball size lump had disappeared!  If you would like to chat or have any other questions please contact me.

Good luck with your operation and meeting with your consultant.

Hi SHaron,

Thank you so much for taking the time to answer and give some really good suggestions. It is very reassuring to hear that you have managed lymphoma as this was something I have had concerns about. I had  delays with GP and having to go private to get then reffered back into the NHS for a fasttrack biopsy . Since the biopsy and attempt by the consultant to remove the lump under local (ouch)  Im actually wierdly ok with having the surgery as it;s been painful and getting worse recently. Im so glad to hear you sound like it has been doable! At the moment its all been so fast I got the diagnosis on the 21st March but no info other than an op, then 2 MRis and now a quick turnaround to see the consultant and all being well with the pre op then op on the 18th. I have taken a month off work and your recovery sounds what I imagined it might be. I have a peri bottle in both loos and take one out when im out and about. Using muslin cloths to dab dry and then wash on 90. NOt a dress wearer but thank god its summer coming so have some sack like dresses so can discreetly go comando. AM hoping if all goes well to get away in the van hopefully by end August but to be honest I am totally focussed on making a good recovery first. 

The macmillan nurses have been in touch which is very reassuring as they seem to have a special line to the gp to twist an arm on getting answers as it's impossible otherwise. Ihave added your questions to my list and it was lovely to read your answer. I think Im just coming to the reality as yet. Have decided not to tell my adult kids yet other than Im back in for another op to finish what the last time couldn't and have only told a few close friends as can't bear the looks and questions and stories of other peoples relatives, all well meant but no capacity to field it at the moment . It's particularly hard cancer as so far in my 57 years as a female on the planet I can count on 1 hand how often anyone has said the word vulva to me!! 

Anyway probably far too much info but thank you so much for your reply and it must have been extrodiarily hard doining all this through covid. Ihope you have recovered well and may take you up on you offer of questions again after Ive seen the consultant.

Have a good rest of sunday 

Hi,  It is a very hard cancer as it is rare and I agree not many people know about it.  Im in your age bracket 62.  I should have also said I hated that you could only shower in warm water but I asked Macmillan and they advised me to use Simple and it's brilliant and so cheap!  I did not tell people at first but then found it easier to talk about it but do it in your time and when you feel comfortable about it.  My cancer was stage 1b so hopefully yours will be the same, if it is you should not need any chemotherapy or radio therapy but you can ask your consultant when you see him although at this stage they might not know.  You will be fine for going away at the end of August and will give you something to look forward to.  My husband book us a week in Devon 4 weeks after my op and my consultants reply when we went to see him was go away and have a lovely time and enjoy yourself.

Good Luck and please let me know how you get on.

Sharon, thanks for your lovely message I can't tell you what a difference it makes yo hear a positive story and I'm so glad you answered. I think it will hit me when I see the consultant and it's re for me rather than what and is of other people experience. Will try and stay zen for a bit longer and I hope you have a lovely week. will definitely keep in touch as it has been so helpful hearing ur experience. thank you

Hi Rach1408

had my 4 monthly check up today and got the all clear! Next check up in August and  crossed should change to 6 monthly check ups.

another tip get some laxative for after your op, last thing you want to do is strain and pull your stitches. I just took them for about 2 weeks after my op.

hope your consultant appointment went well and good luck for your op on Thursday.

hi Sharon, what wonderful news I am so delighted for you and do glad you let me know. saw the consultant and my op will be rather more than originally expected including removal of cclitoris and anoer area on the right that is vin. he is hoping to get enough margin Ans save my urethera. it's a lot to take in and possible radiation therapy if the margin was not enough. I am really in 2 minds abt the radiation therapy as it seems to have potentially life changing side effects however don't need to decide yet so. was all set for Thursday with preop this morning and just got home when they rg to say now on the 30th. had a bit of a breakdown as had got my head set but ok again now. am going to go to Scotland for a week in my van to take my mind off it all! I really am so glad to hear yo news it's such a relief to hear you are out the other side . have some lovely days and take care

hi Rach1408,

sorry to hear your news but fingers crossed your surgeon will get a clear margin and no need for radiotherapy.

would suggest talking to MacMillan specialist to go through radiotherapy they will give you lots more info.

try downloading from MacMillan support understanding cancer of the vulva it has so much info I only wish I found it sooner.

Enjoy Scotland and chill. Will do you the world of good. Good luck for the 30th and please let me know how it goes.

Hi Sharon,

I will go on now and have a look thanks , I will keep in touch and its so lovely of you to have kept me in mind. I hope you are having a bit of a wahoo about the 4 months clear. Fabulous start to the summer. Take care RAchel

Hi Rach1408,

just checking on how you are doing and if your operation went ahead?

Hoping all went well and you have some good News.

xx