Vulva cancer stressed out

Hi Sandrob, 

I am sorry to hear of your diagnosis. 

I don’t have any real advice I’m afraid, but I’m wondering whether it could be worth speaking to your GP to see if there’s anything they can suggest for your anxiety and sleep problems. Other than that my biggest piece of advice is be kind to yourself! You’re going through a lot and self-care will be important. 

Well done on cutting down on your smoking! 

Here if you want to chat at any point and I wish you the best of luck with your treatment. 

Thank you for replying back to me I did have some sleeping tablets when I was first diagnosed but they never worked and the anxiety tablets they put me on made me wake up wet through with sweat I just feel so lost I do have support at home but my biggest fear is my husband is back at work next week and don't know how I'm going to cope on my own has he's my rock xx

Hi Sandrob, 

Sorry to hear the sleeping tablets didn’t work and you didn’t get on with the anxiety medication. I am no expert and I don’t know what is available, but if you continue to struggle it could be worth seeing whether your GP can suggest an alternative. 

I will be thinking of you next week when your husband returns to work. Do you have any hobbies to distract yourself with or is there someone that could visit, even for a short while, to break the day up a bit? 

I do have some hobbies I like colouring but cause I'm not sleeping I'm to tired to do it and yeah my daughters are going to pop in after work to see me I just feel like I'm losing control It don't help that the growth gets very sore as well xx

Hi Sandrob ,

It’s hard to focus on things whilst tired isn’t it. I am pleased your Daughters are able to pop in after work. Hopefully that will break the day up a little.

Your feelings are all very natural. It’s hard to be faced with a situation like this where you’re unable to control it. Sleep problems and pain further add to the way we feel.

I am here to chat anytime if you feel it would help. Macmillan have a support line, where you can receive emotional support from one of our lovely advisors. They can be reached on the phone number below. We also offer a free counselling service if you feel that may help. You can access some information on our counselling service here.

Thank you so much and I phoned the support line yesterday has was having a really bad day cause I'm in limbo has I've been for my radiotherapy planning scan was told treatment will start on the 9th of January and there now saying it might not has my consultant has to sign the planning off even though I have all my appointments for chemotherapy which can't start without radiotherapy and then I get a letter saying it could be stage 3 but then again it could be stage 4 and I'm just so fed up and confused I did phone radiotherapy appointments up and they said it could be three to four weeks but do have appointments for me I just don't want it to spread every where xx

Hi Sandrob ,

I am glad you reached out for support yesterday. 

The waiting around and uncertainty can be the worst part sometimes. I know I found it very difficult. I hope they make a solid plan for you soon so you know where you are with your treatment at least. It must be equally as difficult to not know what stage your cancer is. Are they able to tell you whether they will likely be able to confirm the stage soon? I know with me they needed to remove my nodes before they could offer an accurate diagnosis. Knowing why they couldn’t offer a solid diagnosis and when they would be able to helped just a little. So if you don’t have this information and would like to know it then don’t be afraid to ask them. 

I remember the worry of it spreading well! I know it’s very hard, but try to take one day at a time and be kind to yourself. Lots of self-care is important. 

It has gone into my groin lymph nodes so they said that makes it stage 3 but if it's gone into my pelvic lymph node than that's stage 4 and I can still have radiotherapy and chemotherapy but will take longer to control it if stage 4 but if stage 3 it could be more likely cured and they said they can't remove my lymph nodes now and I'm hoping to get a call next week to confirm my treatment I just I think its a long time to wait to get treatment started has if started sooner it could prevent it spreading has if mine is stage 3 the it could end up being stage 4 before I get my treatment all I think about is I'm going to die and my anxiety kicks in and have loads of panic attacks and I just cry but I'm eating OK and eating fruit xx

Hi Sandrob ,

It sounds as though you’re quite clear on where they are in terms of staging you, which is good. Still not easy to not know for certain, but good that you know why they can’t say what stage you are. 

Anxiety can be so tough and panic attacks must be awful to experience. Do you have a cancer specialist nurse? If so could you make them aware of the impact the possible delay in starting treatment is having on your anxiety? I don’t know whether it’s the same with all hospitals/consultants but when I make contact with my nurse she can easily talk to my consultant. I’m not sure whether there is any way they can speed things up, but I would like to think if they can then they will given how it is affecting you. 

I really feel for you at this difficult time. I hope they  can get everything in order to get you in as soon as possible. 

I have no specialist nurse at the minute when I phoned the radiotherapy up to see if I had an appointment yet I broke down and told her how I was feeling and how I can't cope with waiting so I hope she speaks to my consultant has she works with her xx