I'm so sorry you are in this situation. I had half my vulva removed and skin-grafted at the end of January. I will try to answer any questions you have, but everyone’s experience is different. There are a few of us on here who have been through it.
im travelling today so may not be online much, but will chat when I can.
please try not to be scared - you will get through this x
Yiyah, I'm sorry you are facing surgery with your vulva cancer diagnosis and you have every right to be scared; it's a scary thing. I'm hoping you have a supportive family and/or friends that will be able to help you after your surgery. If you could write down all of your questions to ask your doctors and/or us that may give you some comfort. Like Sara said, there are some of us who unfortunately are veterans of this horrid disease and there are no dumb questions - this is something new for so many people because although there may be a lot of us on this site, it is still very rare compared to other cancers.
I don't know when your surgery will be but I do have a "tip" list that I typed up because I've been asked so many times so it made sense for me to save it on my computer. LOL One thing to remember though, is we are all different cases, we may have similarities and can share our experiences but we all have doctors who may decide to treat the patient differently, we have different pain tolerance, healing process, etc. BUT one thing we do agree on is supporting each other, being here for you to cry, vent, share happy news, and gain experience, tips and knowledge.
We are here for you. You let me know when you are ready to ready or if you choose not to see my 'tips' list. Are your doctors talking about lymph node removal too or wide local excision, partial vulvectomy or radical vulvectomy?
Yiyah, are you feeling any better? I am going to paste my 'Tips' document into this email. You may not need all of these because it depends on what they will be doing for you. Always remember though these are my tips and what's worked for me so you may want to ask or show your doctor or nurse if you have any questions about it. I know many ladies have said in the UK their doctors do not like a sitz bath but here in the US they recommend we use it three times a day. I hope this helps you; I wished someone would have told me all of these things before my surgeries started so now I do it to help never to scare anyone....if you have any questions, please don't hesitate to ask any of us. Thinking of you. Lisa
Lisa's Tips After WLE or Partial Vulvectomy:
Rinse really well when you shower and it's helpful if you have a hand-held shower head. (once doctor says you can shower)
Pat dry only and use a blow dryer on cool setting to be sure you are nice and dry after shower and after you pee.
If you get a chance to get a sitz baths it not only feels good it also makes you feel clean. You can get this for about $20 from any drug store.
Ask for a squirt bottle before you leave the hospital, it is called a perineum bottle, and if you fill it with cool or luke warm water it helps to rinse you off when you pee.
Air drying is really important if you can; I liked to put a large bed pad on my bed in case of discharge if I was air drying. If you have a way to prop your sheet up over your bottom half it is helpful for better air flow.
Roll out of bed instead of sitting up because your stitches may tear – it’s not the end of the earth if it happens, but you then have to heal like that and it takes longer.
Get help getting out of chairs, blow up donut for your chairs help with comfort. (my husband or daughter would take both my hands and pull me up because I always tried to be somewhat reclined as to not put direct pressure on my surgery areas)
Ask for lidocaine if peeing is still unbearable after you’ve healed enough so that you don’t hurt your sutures or wound.
Ice packs will be your friend, especially if you swell up. You will know if you’ve done too much for the day because you will swell up and be happy to have ice nearby.
Big loose underwear
Drainage Tubes Tips after Lymphnode removal:
It is normal to have drain tubes after lymphnode removal because you will have drainage for 1-2 weeks (average). The nurses will give you instructions on how to empty them and record the amount of drainage. Once the drainage is under a certain amount you will go to the doctor and have them removed. (this doesn’t really hurt – just a deep breath and as you breathe out the doctor pulls it out.
The drain tube should come with a velcro clip that you will attach to your clothes to keep them from just hanging.
Taking a shower – well I took a piece of material or a scarf and tied it around my waist and clipped them to that while I was in the shower so that they are not just hanging.
Sometimes the sutures that hold the drain tube in place can hurt so you may want a bit of 2x2 or 4x4 drain sponges to lessen the irritation.
In Dwelling Catheter Tips:
The nurses will show you how to empty your urine from the bag. You just have to make sure you have it clipped properly. It is helpful to have a bucket at night to put the bag in in case it leaks but that only happens if you don’t click it all into place properly.
Everyone is different but after a week sometimes it just hurts so sometimes, I would put some lidocaine or Aquaphor (like a Vaseline) down there but you would have to clear that with your doctor first...they may want nothing until your sutures have dissolved.
You will absolutely find the catheter to be the best especially if the WLE is anywhere near your urethra. Sitz baths are comforting for this irritating pain too as well has ice.
