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

Hi Sarah,

Sorry for not replying earlier - I just wanted to update on our conversation on my treatment, also it may be helpful for anyone in the future going through this. And you have been so lovely replying to my messages so thank you for your support. 

I am nearly done - 5 chemo - 23 Radiotherapy with 2 more Radiotherapy to go Monday and Tuesday. Then 3 appointments for Brachytherapy 1 a week over 3 weeks not looking forward to that but needs must.

Did you have this Brachytherapy treatment?

I had very very good news on the MRI scan last week -  the tumour has gone! in the words of my consultant `it is phenomenal` this news is amazing.  

It's been tough - Chemo days draining then I didn't feel remotely normal until the day before the next chemo.  It's been like having a horrible hangover.   - I had side effect of chest pains caused by indigestion that would keep me awake for 3-4 hours a night, when I called the care line I was told to phone 999, I knew it wasn't  my heart and I did mention this in my pre chemo appointment and they arranged ECG and CT lung scan just to check and all were clear so was prescribed some tablets to help this.  The care I have received has been brilliant.

Yes the burn has happened down below, leading up to this I was advised to get some Aqueous cream to put on loo paper when wiping and can use as a wash - this was helpful.

I have now been prescribed some barrier cream which is helping a bit, it feels like prickly heat not nice but your right drinking loads helps as it is at worse when peeing. It is also keeping me awake at night.

  I've also alternated between diarrhea and constipation which is more so than the diarrhea which has caused piles that does not help the situation. Just ordered a sitz bath and donought cushion to ease down below  - I feel like an old person! 

Cassiedoo x 

Hi Cassiedoo 

It's good to hear from you again, and amazing you’re nearly finished your treatment!  I was scheduled to have the brachytherapy treatment, but the night before I was due to go into hospital for it I had a pulmonary embolism (caused by the Cisplatin) so I couldn’t have it.

I wasn’t allowed to have the general anaesthetic required for the rod insertion (mine was a different type of brachytherapy to yours as I would have had to be in hospital and flat on my back for 2 days as the doses were delivered). I did beg them to go ahead but it was a flat no, as it could have killed me to have the anaesthetic. I had an extra 7 doses of radiotherapy instead. 

I did have heartburn during chemo and was prescribed pills, but it was a very different feeling in my chest when I had the embolism so I actually had to get an ambulance. I was given aquaphor cream for down below but I was very glad to get my treatment finished and for the side effects to subside! And they did all subside pretty quickly-though tiredness persisted for a while.

I’m sure you’ll find the sitz bath soothing to use-I see it recommended very often in the groups here for people having pelvic radiotherapy. Hopefully sitting will be easier too on the cushion! It wasn’t suitable for me after my exenteration surgery where I’d lost my rectum and vagina amongst other things, so I didn’t spent long periods sitting in the same position! 

I hope you get these last bits of treatment done without any issues- no-one likes the thought of brachytherapy, but it’s the final hit to the cancer and I wish I’d been able to have it. Then it’s onto your recovery and getting your life back after all you’ve been through. 

Your update is much appreciated, and I’m sure it will be helpful for others joining the group and facing the same treatment. I hope you’ll stay part of the group to be able to help others who are new to this.

Sarah xx

Hi Sarah

It sounds like you really went through a lot!! I consider myself very lucky to have got away with what I have so far to be honest.

I had years and years of high grade pre-cancerous cells, with colposcopy treatments to burn them off then eventually they could do no more but a hysterectomy - that was 7 years ago - off I skipped thinking that was it then this turned up.

I felt a bit neglected as I was told no need for smear tests ever again but would have thought due to my history they would have done regular checks. When I questioned this they said I had 2 clear checks after and that is standard.

Anyway, I will of course keep in touch and keep eye out on this site if anyone else is going through the same as it is quite rare and nice to have someone to talk to.

xx