Side Effects Following Treatment

I am so sorry your mom is going through this. I still haven’t started treatment yet so I’m afraid I can’t give any advice but I just want to say I will keep her in my prayers.

Thank you so much, and wishing you all the best with your treatment xx 

Hi Pintsizeprincess I'm sorry your mum is suffering. Have you spoken to the hospital about your mums sores. The strongest cream I had from the hospital was flaminal forte which I applied regularly throughout the day and after every bowel movement. I can't remember how much I went to the toilet after treatment but I'm sure it wasn't that much. I've seen some people on here do the FOD map diet to help with toilet issues so that maybe worth looking into. Also have you spoken to your special nurse about any of this as they may be able to help or at least put your mind at rest. 

With regards to the lymph nodes, mine had spread to one but I didn't pay much attention to it. I do know that the treatment continues to work after you have finished getting it which is why they tell you not to worry about the 3 month scan and it's the 6 month one that is important.

Just a thought re the sores and I'm not medically qualified and you may have tried it but if the hospital creams aren't cutting it maybe try sudocrem I'm sure I've seen some on here have used it with success.

Sending hugs. Xx

Hi 

Sorry to hear your mum is still suffering.  I really feel for her. 

I finished my treatment 11 weeks ago. I found my skin did heal quite well after 4 weeks. 7 weeks to still have the sores does seen quite long. Have you reached out to the team for any advise ? Sometimes they have specialist tissue viability nurses.

In terms of the toilet trips, when I was having radiotherapy I was going about 8 times, my nurses told me this is too many and to take loperamide and if it didnt work to contact them again . So I would 100% contact the nurses with regards to this. 

At 7 weeks post treatment the radiotherapy is still working . Lymphnodes can still feel prominent from inflammation. My tumour spread to my vagina and i can still feel some of it, but trying not to worry until my repeat scans.  

All the best for your mum ️ 

Thanks Bungle, I will check with Mum what cream she is using but I know she has tried various which the hospital gave her. 
the hospital haven’t been great in all honesty with aftercare.

Mim called and spoke to one of the nurses about her sores and was told that is all part of the treatment and that was it.

thanks for your reply and advice xx 

Thanks so much for your reply, and I hope all your scans etc go well. 

the hospital have been pretty rubbish with Mum in all honesty and when she mentioned about her sores etc they just said it part and parcel of the treatment and that’s it.

i think the problem is because Mum is going to the toilet so much as soon as she goes it just opens the sores up again, So they are never getting a chance to heal. Xx 

I found the radiotherapy team more useful than the nurses affiliated with my oncologist. They gave me different dressings and creams etc. 

Yes my Mum said the same, she was supposed to have her own nurse assigned to her and only ever saw her once. 

The radiotherapy team were very good, always very kind. 

Hello Pintsizeprincess 

Your poor Mum - seven weeks is a long time to still be suffering so much with the sores.  It sounds as if she needs to see a tissue viability nurse (I saw one weekly as my sores were severe too).  She was amazing.  But that isn't much help to your Mum if she can't manage to see anyone.  If the nurses aren't any help I would see if you can email the oncologist directly with all the problems that your Mum is having.  Sores to the extent that your Mum can't get dressed isn't 'part and parcel of the treatment' seven weeks after treatment ends.

Loperamide certainly would help with the frequency of her bowel movements, she just has to be careful not to get constipated which can also cause problems.

And if absolutely no help is forthcoming, consider contacting the PALS department at the hospital.  The snag here is that it can take a week or so for any action to be taken which is a long time for your Mum.  

I hope she (and you) get some sort of solutions quickly.  Please let us know how she gets on.

Big hug

Irene xx

Hi 

I know this is a day late but I too had problems with opening bowels several times a day to the point I was scared to leave the house as the early recovery days I felt I wanted to go to the toilet all the time which can possibly be a result of tenemus. This did improve as time went on but never fast enough when you are suffering. I was told by a dietitian at the hospital to try the FODMAP diet and found a massive improvement. You can get plenty of apps on your phone for fodmap guidance when you are out. It’s quite strict but certainly worth it and eventually you can try and introduce new foods to check your reactions. Many of the foods I loved but gave up because it’s so worth it. As Irene has pointed out your mum may benefit seeing the tissue nurse or does your doctor have visits from district nurses who also deal with things like bed sores and tissue breakdown if your mum is unable to get out. She should still be having access to the 24hr emergency care phone line. I do hope you are able to find relief for your mum soon as possible 

Julie x