Vulvar cancer

Hi there Paula, not having a good couple days. I developed a lot of blood in my SPC bag and tubing, pressure, high blood pressure, fever, nausea, and ended up at our redi  care centers. Got an antibiotic shot and oral antibiotic. Bladder infection and spasms in rectum and my bladder feels like someone is scraping my bladder or the worst UTI times 50!! On top of this my father in law was ramparted to hospital then transferred to another at 5:30 am today and I couldn’t go. My BP is too high and I had to flush cath every one to two hours to release pressure. My friend came and changed my cath tube to see if it was just bumped or moved. It is now draining but with the infection it is causing even more spasms and pain. My husband came home tonight from hospital and I was hoping to go in morning but I don’t think I’ll be able to. Ugh!

Hi Lisa how are you? did you celebrate Christmas? mine was very emotional with the family, we had a nice time though.  We are away for New Year which im dreading, i don't like being ill around my daughters its very stressful.  I start my 5 shots of radiotherapy on the 3rd of Jan.  The cannabis oil is upsetting my bowels for some reason so ive lessened the dose, it helps with pain but it has made me more incontinent i suppose because it relaxes me so much.  Sometimes i just don't know whether im coming or going, like you my mind goes everywhere during the night and at the moment i cant stop crying.  xx

Paula, I’m so sorry you are having a tough time emotionally and physically; sometimes it is so hard to carry all of our feelings, thoughts and fears all by ourselves. I hope the radiation helps you and it doesn’t upset your body’s functions. Watch your rectal spasms if they get bad get something for it because if they last a long time it can damage your rectal muscles and end up with uncontrollable diarrhea.

We had a wonderful Christmas for the first time in years. My daughter and my niece and nephews surprised all of us with fall photos of them all together. My husband bought me a ring because last year I lost my wedding ring. It’s nothing fancy, it’s just me, and he has never bought me jewelry before so this was so very special. 

We have plans to go to my brothers for New Years; we each bring steaks to grill, a dish to pass and drinks and just visit. I don’t know the last time we made it to midnight but sure glad I’m here!! 

If my PET scan is clear at my Jan apt this will be the longest I’ve gone cancer free in 11 years. My one year is Jan 12. And my apt is Jan 22.

please try to have a Happy New Years and fight this beast hopefully for the last time!! Keep in touch and I will be praying for strength and peace for you. 

Lisa

Hi Lisa well ive come through radiotherapy and its been brutal i didn't think it would be so bad this time but it was, dreadful burns in groin and incontinence but its getting better every day. Went to hospital checkup yesterday and i have to go back in another month as the radio has shrunk the main tumor but not touched a tumor which is running along the perineum to the anus. The doc said radio is still working and to go back in 4 weeks.  Chemo has been suggested for a period of 5 months having it once every 3 weeks.  I really don't think i can face anymore treatment after having 15 years of 30 operations and pain etc etc...I asked what the if chemo would really do me any good and the answer was 'in some cases its been helpful' my daughters don't want me to have anymore treatment, i think i would rather have some quality rather than being ill for another 5 months for nothing, my hope has gone. Do you have any experience of chemo? x

Paula

Paula, I am so very sorry about how you are feeling; this is why I hate radiation so much. No one tells you about the after effects when you are done with your treatments and back at home and it's still working inside your body. The incontinence should subside as long as you are doing some pelvic exercises like kegals. Also, if you develop the burning in your rectum and spasms and have diarrhea exercises using your rectal muscles is so important too. I actually had to use a small dilator in my rectum and squeeze as my exercises to strengthen my rectum again because the spasms and radiation deadened the muscles.

I had 5 weeks of chemo along with my radiation. It was called Cisplatin and was supposed to make the radiation work 'better'. If you remember my 25 radiation treatments and chemo did not work on me and left my tissue inside and outside ruined.

You have such a tough decision. Are you thinking this is the end? Have the doctors told you that? What do you think will happen if you do try the chemo vs not trying it? To me the radiation was 100% worse than the chemo. All the chemo did was make me sick, nauseas, dry mouth, killed the rest of my lymph nodes with the radiation combination and put me in menopause the first treatment I got.

You are always in my thoughts and prayers Paula.

Sincerely, Lisa 

Thankyou Lisa for the info, ive decided not t go for chemo as im not sure whether it will help with the primary cancer still in vulva, although it may help the cancer near rectum, anyway ill chat again with doc next month.  I think this is now a downward spiral, i want quality of life and not have the next 6 months being ill f i had chemo. I agree the radio is brutal i am so sore and burnt and pain killers seem to do nothing apart from give me bad migraines and feeling sick (pregabalin).

You have had so much pain with your treatments and what its left you with is hard to maintain your quality of life, i understand we are guided by our docs but sometimes enough is enough.

The diarrhoea is much better now and the one thing that is better is my bladder and i hope it lasts im actually peeing properly for the first time in years, no incontinence at the mo.  Its just the stinging and burning in the vagina which i cannot seem to get under control, if i use instillagel it dries the skin and im moisturising all the time.

The docs have still not given me any prognosis, im a strong person and i think ive still got time left but who knows??

Thinking also of you Lisa.

Paula x

Paula, I was just thinking of you and wanted to tell you about a new hormone treatment my doctor put me on last month because the estrace cream wasn't really doing anything for my vagina. It's called Intrarosa, it's like a little capsule that you insert up your vagina and is supposed to help in stay moisturized and soft. My vagina is closing back up right now because the scar tissue is overwhelming and feels just like bone all around the opening. She is hoping this will help more than the estrace cream because I have to keep it open or they can't check me for uterine and cervical cancer. I hear it's expensive but my doctor has a coupon card that was supposed to be free the first month then no more than $20 a month for a year. It didn't work for me for some reason and the pharmacy is still working on the problem but my insurance paid most of it and it was $40. 

If that's not an option have you tried the estrace cream?

Always thinking of you,
Lisa

Thanks Lisa i will look into the cream, i did have something like that years ago but it did contain oestrogen. 

Paula

Hi Lisa how you doing?  Its been 3 months since radio and im still in awful pain, my doc has put me on oxycodone 5mg which im struggling to take because of nausea and foggy brain.  The tablets are not slow release which i will be asking for in the week. My question is if i keep taking these painkillers i have no quality of life, i cannot get out or drive.  So i tell myself is this it!!! Should i just stay most of my time in bed or get out and be in pain? Im not ready to stay in just yet, i just can't seem to get pain under control unless i take opiates.  I know you are in the house a lot are you still taking fentanyl? This can go on for months im at my wits end with it all.....

big hugs

Paula x

Paula, I’m so very sorry you are still in so much pain. I say take the pills if you have to at this point. I wish they didn’t make you nauseous though. I finally got a pain med!! My onc gyne wouldn’t give me anything for pain and at my last weeks apt I pretty much demanded to see my urology oncologist and when he saw me walk in with my cane and actually read my email and listened to my husband explain how much pain I’m in they finally gave me a rectal suppository that’s an opiate but last like 4-5 hours. Now it’s just fighting insurance company to mail them out to me. My first trial script took 23 days to get! 

My PET came back good however I still had to have a biopsy though  and looks like my bloodwork came back with issues I’ll find out tomorrow hopefully what that means!! 

I still don’t leave the house much but I’m ok with that; I’m hoping to start painting again and looking forward to our snow to melt so I can at least try to walk our driveway. I wish you and I livedearby.