Newbie reaching out

Hi Pickles

Sorry that you have not yet had a reply to your post but sometimes it can just take a little longer for someone to see it and offer support. 

My own cancer was endometrial but I also had chemotherapy and external beam radiotherapy. Mine was carboplatin and paclitaxel and I wonder if yours is the same. It often seems to be used for gynae cancers. My radiotherapy was for 5 weeks also.

It can feel a bit overwhelming when all the treatment is ahead of you. I remember thinking I would never manage 5 weeks of radiotherapy, but actually once the treatment started it went quicker than expected. 

I did have side effects from both treatments but there were often medications to help. 

I am sorry to hear that you are struggling with a seroma. Have you spoken to your CNS about it? Perhaps once treatment begins it will heal. 

Hopefully someone with the same cancer experience will now spot your post and offer more support. We do have the Support Line available from 8am-8pm everyday if you wanted to ask one of the nurses about the seroma or if you generally would like to talk things through. 

I wish you well with your treatment and it sounds like you have plenty of family around to help out. 

Jane

Hi Jane, thanks so much for reply iv spoken to surgeon and he says leave it incase of infection, its getting quite painful if I'm honest and iv developed lower back ache that comes on stronger at night don't know of this is anything to do with it as seems the whole of my lower body seems tighter, can I ask did you use any special cream that helped with radiotherapy or do they supply some? I go to these appointments and when they say any questions they all seem to float away until a few days later..

I think because I had my biopsy at the beginning of August and one lymth node had burst or something they seem very keen to start treatment 1st and deal with everything after, just means walking bendingg basically everything is a bit more slower....mind you slower might be better at the minite. I'm quite a nervous person and suffer with anxiety a lot iv thought a few times I will ring and speak to somebody but then I bottle out I just feels so lonely 

My hospital gave me cream to use at the first session. About 3 weeks before radiotherapy started I went in to have a CT planning scan and they went through everything then. You are allowed to use your own creams as long as you let them know - just because some are not suitable. I didn't have much issues with my skin, my side effects were more with diarrhoea- which is common with pelvic radiotherapy. I also got very tired which again is a common effect. 

I know what you mean about appointments. I would often forget things so I started taking a list of questions in with me each time and went through them one by one. Once the radiotherapy starts you will see them everyday and can bring up anything then. I also had a review once a week. 

I didn't find chemo as bad as I expected and for me it was a 3 weeks cycle. Day 1 at hospital and then 20 at home. The travelling and waiting around during the radiotherapy, I found harder. 

It is not unusual to feel anxious about speaking to someone you don't know but the people on the Support Line understand this and are lovely. If you prefer you can do an online chat with them- some people prefer that. 

Its not unusual for them to want to start treatment as soon as they can- My chemo started 6 weeks post op and radiotherapy followed directly after. 

Your seroma sounds really uncomfortable. If it becomes worse or you have any other symptoms such as a temperature etc, maybe it would be an idea to get checked with your GP as if there is an infection brewing you might need some anti biotics. 

Jane

Hi Pickles

i am so sorry that you are in this position, I had vulval cancer in 2022, and was lucky enough to have my tumor successfully removed, no radio or chemo, i too had lymph nodes removed from the left and right side of my groin, i had a terrible haematoma on the left side, which became infected and left me very unwell, but healed well eventually. i was 56 at the time, and was told that this type of cancer is very rare in woman under 70 but more and more i hear about younger woman getting it. There is no way to dress it up but its psychologically traumatic and for me as a single woman difficult to consider relationships due the changes down there, that said i am still here and beginning to heal from the trauma with the help of therapy, i don't know if this is something you feel you need  ?