Treatment has started

Hi Cassiedoo and welcome to the group.

I had the same schedule of treatment for cervical cancer where the tumour had grown into my vagina, so I can remember how it felt to be starting out on this regime. 

It’s very normal to be scared, but please don’t assume that it will automatically be awful and that you will get a lot of side effects as people all react differently. I had no side effects until the third week, and they were caused by radiotherapy, not chemo. Are you on Cisplatin? I found chemo days very relaxing, although long, and I didn’t feel sick or even nauseous once. You will be given anti sickness meds if you are, 

I did suffer from diarrhoea and cystitis but was given tablets to deal with the diarrhoea and creams for the cystitis. These can be quite common effects from pelvic radiotherapy. If you start to feel these kinds of effects starting, speak up! There are lots of things which they can give you to help.

Keep drinking lots of water to flush out your system, and I found a bland and simple diet helpful-avoiding lots of fruit and veg which can cause wind (you don’t want that if you have diarrhoea!) and excess gas in your bowel is not good when you’re having radiotherapy. A peri bottle when you’re going to the loo can help with the cystitis, and lying on top of your bed with no underwear once you have applied soothing cream will help give relief.

My side effects subsided very soon after treatment ended, and did not come back. I did feel very tired as treatment went on, but used to have a nap in the day if I needed it. Just listen to your body-cancer related fatigue can be very real for some people as it was for me, but my treatment was almost 7 years ago now so it’s become a more distant memory!

It never got awful for me, and I hope you’ll cope well and come through to the other side successfully. I wish you all the best and hope it goes smoothly for you. Please keep asking questions if there’s anything you’re worried about and we’ll try to help. 

Sarah xx

Hi Sarah

thank you for your message. 

My oncologist told me of all the side affects which they have to tell you I know, what stuck in my mind was when he said ‘ you will be walking like John Wayne’ really that’s true and I told my friends we had a laugh but omg! 

Yes I’m on Cistplatin my first treatment was last Thursday and I didn’t find it too bad, It felt like being on a long haul flight and you can only get up and keep going to the loo for a break. I’ve just done  my 5th radiotherapy. 
i felt quite sick until yesterday and they changed my anti sickness tablets and that has improved. 

Today I’m starting to feel uncomfortable down below , a very slight burning feeling on and off is that a bit soon? , maybe I should ask tomorrow for something to help before it gets worse ? 

thank you again, it’s good to have found this forum. I’m told it’s very rare to have V Cancer, I also feel embarrassed about telling people where I have cancer so I just say oh women’s problems  -  is that normal? 

xx

Sometimes I wonder if the medical staff think before they speak! I ended up having 32 sessions of radiotherapy and I wasn’t walking like John Wayne at all you’ll be relieved to know!

Some people suffer some level of radiation burns, but I didn’t have any at all. Most women will have had cystitis at some time in their lives, but it didn’t make me walk funny! It just felt like cystitis had felt in the past-sore when you wee. The best thing is to drink and drink some more water as even though it’s difficult needing to wee more, it’s better than having your bladder irritated by concentrated urine from not drinking enough. 

Each of us reacts so differently to the treatment, with some sailing through and some finding it a bit tougher so it’s really difficult to know what will be the case for you. I’d mention the burning feeling when you go for your treatment and see what they say-as I said, I didn’t feel any discomfort until week 3 but that’s not to say you might need some help a little sooner. I wasn’t prescribed any typical and usual cystitis remedies as this was specifically radiation induced cystitis for me, and I just needed to tough it out and use the prescribed creams to help with soothing things externally. Drying myself with a hairdryer on a cool setting was blissful! 

Vaginal cancer is rare so this group can be a quiet one. Definitely it can be difficult to tell people where the cancer is, but it all depends on how open you would like to be. We shouldn’t feel ashamed-it’s not our fault we have cancer- but you need to feel comfortable yourself with what you share with others.

I personally wanted to be quite private with my information so only told people I had been through cancer treatment after it had finished. I only shared with a couple of close friends where my cancer was and I could trust them not to gossip.

I just felt it was my personal business. I actually only said I had cancer and people tended to assume it was breast or womb cancer, but if they asked outright I just said it wasn’t either of those and left it at that! Even now, almost 7 years since my original diagnosis, very few people in real life know my story. It’s really a personal decision so don’t feel you have to say if you don’t want to.

Sarah xx