Week Six - Reflections

Hi Mrs Badass

Well done on getting to the end of treatment. Sounds like you have a very supportive husband. I can relate to the towel I had a bath towel wrapped round me almost permanently at the end. You shouldn't have to pay for your creams, ask the hospital to post them out to you mine did. Now just rest and heal and be kind to yourself. Sending hugs. Xx

Thanks Bungle1  I'm receiving treatment at the Royal Berkshire Hospital - and they've been truly amazing but they didn't have Flaminal Forte on their prescription options.  I'd read others on here recommending it as the best cream to use so it's a small price to pay.... 

From your experience, did things continue to get worse for those first 7 to 10 days after treatment ended? And if so, would you mind sharing how? 

Thanks for all your support xx 

Hi Ali it seems to me you have everything in control and prepared for the next challenge during recovery. I know we all react differently and a lot depends on where the exact tumour was I suppose. Mine was very near the internal sphincter and after passing a rather large stool it caused a fissure. This was about a week after my treatment was finished and it’s usually the sphincter that causes the painful stools. Also I can so much relate to the constant visits to the loo and also just to pass urine. I ended up sleeping in the spare room so as to not disturb my husband and would get up do the necessary and clean up and get back in bed and half an hour later I would have to start again. I was lucky I had no blisters externally but was very inflamed internally and vaginally. In fact it was full of green pus (which I was told after checkups it was normal) and would have to pull my labia apart to stop it sticking and I’m not saying this to frighten people I’m just saying it can happen to some of us. My anus has been on fire and so grateful for morphine plus paracetamol and ibuprofen. Instagel did nothing for me but did use domeboro powders which helped soothe soreness. Amazon was my saviour even though half the stuff I couldn’t use due to stinging. I am three and a half years post treatment and I’m past all the pains but still occasionally get sore due to having more than enough bowel movements like yesterday after eating homemade chickpea and cauliflower curry but sort of worth it. 
one thing I did religiously was pelvic floor exercises and pelvic stretches as treatment does affect your bones and try and keep as supple as you can. I also would hover over the toilet holding it for as long as I could to try and strengthen my sphincter muscles. It takes time and you are very very early days but will get there as I feel you have the right attitude 

Julie

Ah thanks Julie Jaycee12 for taking the time to respond.  I've literally just done a BM, cleaned up, sitz bath than had to do another BM, clean up, sitz bath and then the Forte gel!!  I'm now relaxing on the bed and ready for some paracetamol!!!  

Ha before treatment I had this amazing goat curry - but boy did I pay for it lol.  I am predominantly plant based so your curry also sounds devine..... 

Yeah I'm hoping that because I took care of my skin before and during treatment, that I might not suffer too badly with the burns/blisters - it's just not knowing what you are doing to wake-up to that's challenging.  

A good shout re vagina care - I've been applying coconut oil externally, religiously - naturally antibacterial but I have definitely noticed that I'm getting the gunk.  I will be sure to start using the dilators when I'm ready and I have oestrogen pessaries for when I start back on my HRT - which will be once I stop the morphine. 

Thank you again for caring enough to share, especially when you are so far out of treatment.  The practical advice re pelvic exercise and clinching the sphincter is appropriated.  My tumor is attached to my initial sphincter too!  

Enjoy your weekend and thanks again

Ali

Xoxo 

Ali

You really are doing all the right things to help yourself and I am really hopeful that you may have seen the worst of the sores - everyone's experience can be slightly different.

And thank you for telling it as it is.  I feel strongly that it is disingenuous to sugarcoat the treatment and side effects and by being honest, other forum users can learn from what you did to get through.  And it is also encouraging to know the painful side effects are par for the course and that they do pass, it is just getting there that is hard!

My husband was my hero too, not once have I been to an appointment without him (once the Covid restrictions were lifted).  But even then, he would be sitting in the car park listening to the consultations and asking questions.  There are a quite a few on here who have gone through this on their own which takes my breath away, but they have been so brave and stoical.

And keep dreaming about walking your dog again!  My main exercise is a long walk with mine every day and I just love her, she makes our world a better place.

And you don't waffle!

Irene xxx

Thanks Irene75359 

Honestly before treatment began I was a member of two Facebook groups and I was terrified by some of the "experiences" I read on there and then someone reminded me that:

1. Everyone's experience is unique to them - because we all different 
2. You don't get the whole picture, their age, their life style choices, or know of any other health conditions 
3. Not everyone shares so you are only getting a limited view - one group which I've now left, felt like they focused on the worst and anyone who didn't have such a challenging time weren't very welcomed. 

So I do hope my reflections will help those that want a more balanced view about my experience - I was literally saying to my hubby, that today it feels like my bum is on fire  - but if I forget that - the rest of me, physically and mentally feels great!!!  Hoping the morphine and paracetamol will help put the flames out..

And yes - I'm amazed at how many people go through this treatment and their circumstances, on their own, 20 years younger or older than me, with other health conditions......it's a very humbling experience that's for sure.

I love your reflections and the advice you share...  Have you thought about becoming a community champion?  I mean to me, you already are!

Enjoy your weekend 

Love Ali 

I ditto that!

Hi Mrs Badass

I find it bizarre how all the hospitals are different. Happy to share although from reading other people's experiences I think I got of lightly. I got worse the Saturday before my last 3 days of treatment almost overnight. I had a mucous avalanche from my bottom so much that the hospital gave me nappies  to get to and from the hospital and i had a bath towel round me at home. My poos were like razor blades dipped in acid. Until that point pooing had been uncomfortable but not really painful my main issue had been burns around the tops of my legs which made walking uncomfortable. I don't feel I got any worse after that. I can't remember the exact timescale ( should have kept a diary) but by 2/2.5 weeks after treatment I was pretty good. I think it was about 8 days after treatment finished that my poos stopped hurting again it was an instant thing 1 poo hurt the next 1 didn't and its stayed like that they went black one day and I had some blood when wiping one day. The same with my burns which was a few days after the poos stopped hurting, one day walking like john Wayne the next normal. I will be 3 months post on the 6th February I've had a follow through Trump and a couple of accidents the worst one being the day after the oncologist gave me an internal exam at about 2 months post which didn't hurt but obviously irritated something. The only thing that's got worse for me is my mental health don't seem to be coping with things as well as I normally would, but I think maybe it's cause I went to treatment by myself everyday which was my choice and maybe its all catching up with me now. I think I've covered everything although I've rambled. Sending hugs. Xx

Forgot to say, I'm still wearing boy pants and living in gym pants as my new skin is quite sensitive. I've also had no problems with the dilators apart from dreading using them the first time. X

Oh Bungle1  thank you so much for sharing more about your journey - I'm sorry if by doing so that brought I'm challenging memories.  

I hear you on the mental health aspect - I just had a catch up with my parents and we all had a cry....I think I'll reach out for some therapy at some point for sure.  I'm conscious of how much we give of ourselves to be brave, and it feels like it's just bubbling away beneath the surface.

Do take care and seek professional support if you feel it would help.  This is an epic, challenging, painful and life changing journey - physically and mentally we take a battering that only a few understand.

Stay in touch 

Ali xx