Vulva cancer and lymph node removal.

Hi Layla22 

I’m so sorry to read what a difficult time you’re having at the moment. The wait for surgery, as I know, is a very difficult time. It can be very hard to get replies from the hospital so have you thought about giving the support line a call? The number is in my signature. They are great at providing emotional support and you could also speak with a nurse there tomorrow for general advice. They won’t be able to give specific information relating to you personally as they don’t have access to your records, but may be able to give you some general advice. 

I found that while I was between surgeries(I had 9 weeks to wait between 2 different operations) things definitely got worse for me and it was very tough to go through. 

Who did you leave a message with at the hospital? was it your nurse specialist or consultant? I would definitely ring again tomorrow if you don’t hear anything in the morning.please let us know how you get on.

Sarah xx

Thankyou for just replying. It helps alot just reading your message.The nurse I left a message with is the gynaecologist  nurse and wellbeing nurse   No reply since I messaged her this morning.I don't no if its just me but when I have my bad days I think there's something else going on in my body. Likes it's spreading somewhere else. Don't if I'm just being paranoid. SO hard  mentally.

Hi Layla22 

I was the same waiting for my surgery for recurrent cervical cancer-so worried that it was spreading in the weeks I was waiting, so I don’t think you’re paranoid at all-I think you’re just scared, and no wonder. And being scared has a huge impact on our mental health. I was on anxiety meds to help while all this was going on for me. 

My surgery was for cervical cancer, so not the same as you, but I had to trust my team that the wait would not cause me further problems as my cancer had become very aggressive in a short space of time. I also needed 3 surgeons to do my operation so it was difficult to get them all coordinated. 

In the end, my cancer had grown but hadn’t spread out of my pelvis, so I was able to have my surgery. Though I haven’t experienced vulval cancer, I have had my vagina removed among many other things, so I do have an understanding of how difficult it is to be facing any surgery in this part of your body, and I really feel for you. 

If you can, please speak to someone tonight and chase up with the nurse if she doesn’t call tomorrow morning. They are usually involved in clinics with patients throughout the day, but she should still be able to get back to you to decide if you need to be seen urgently.

Sarah xx

Thankyou. It helps alot just reading your message. Some days  ifeel really good and like nothing is wrong, but these last couple of days I feel really down and low. 

I absolutely get where you’re coming from. I had a huge amount of pain which was relentless while waiting for that op-couldn’t sleep and it just wore me down. When you’ve got horrible physical symptoms, it plays on your mind and makes everything seem so much worse. I couldn’t help myself from fearing my cancer was growing and I wouldn’t be able to have surgery. But sometimes when my pain relief kicked in I could actually feel good for a short time-it was very up and down I found.

Now, more than 3.5 years on, it seems like a bad dream. I tried to focus on getting a good outcome from the surgery, not the process itself, and tried to tell myself every day that although there would be some pain from surgery, it would be temporary and it couldn’t be worse than what I was going through. That turned out to be exactly right for me. The relief was huge!

 I’m hoping that will be the same for you, and in time you’ll also be able to look back and be amazed at how far you’ve come, 

Sarah xx

Hi Layla22 

Howard you feeling today? Have you had a call back from the nurse or been able to speak to anyone this morning?

Sarah xx

Called hospital again, left message no call back yet. Been up doctors but could only see a nurse. She took swabs.Broke down crying infront of her.No help she just asked if I was suicidal.  Got appointment with my own doctor tomorrow.. Don't feel so down today. I can deal with the pain 

In pain everyday. It's mentally that's hard. Felt really down and depressed the last few days. Mentally feeling better today. Had a really big cry.Thankyou for thinking about me. Got no family members for help.

Hi Layla22 

It’s very sad you have no family to support you. What about any close friends? I honestly believe that the mental effects of cancer can be as bad as the physical, but this doesn’t seem to be well catered for in my own experience.

At least the nurse has taken swabs which will identify if there is an underlying infection there which needs treated. Were you given any advice or help with the pain? Make sure the doctor knows how bad things are when you go to your appointment tomorrow. If you can get on top of the pain that will make things seem a little better I hope. 

Having a good old cry is a helpful thing-you are suffering here and crying can release those emotions inside and help make us feel a little better. It’s very natural to feel sorry for yourself in this situation, and the waiting is making things worse for you. 

But it’s not long now until your surgery, although I understand the wait seems endless. Once it’s done, and you get through it and start recovery everything should feel much better all round. You just have to hang in for this next little while. 

Sarah xx

I am. You don't realise how helpfully you are being to me.. Mentally I feel alot better today..All your advice is so helpfully thankyou and I hope you are OK. I never ask if you are coping.