Hammer House of side affects.:

Dear L Craig

I’m sorry you feel so bad and are getting so many side effects. I finished treatment nearly eight weeks ago and can identify with most of those! It certainly is a short but challenging treatment. When did you finish chemo radiation? 

Hi LCraig

I'm sorry you are having such a rough time of it. I can relate to some of your side affects. I'm almost 4 months post and somethings still aren't normal but things have improved over time and hopefully they will for you. I hope you manage to get to maggies today and get the support you want. Sending hugs. Xx

Hello LCraig

I have copied your bullet points and given my own experience (not everyone has the same)

• Accidentally pooing myself.

The early days can be tough, the anal sphincter has taken a battering and takes time to recover.  I found the safest option for me was to not go out until I had been 2-3 times in the morning.  I had a Laxido daily to make sure that after a couple of mugs of hot tea in the morning, I would be 'cleaned out' and safe to go.

• Bowel leakage.

Yes in the early days, but as the back passage recovers, very rarely

• Acid rain around the ring piece.

The old acid drops - took me at least 9 - 10 weeks to get over that.  All I could assume was that I had no internal skin after treatment and because the area sees constant traffic it took longer to heal 

• Fatigue (takes me by surprise and I can’t even think straight).

The extreme fatigue does improve, again it took me about a couple of months before I felt like my old self

• I want to murder everyone, and

I didn't have that, but I am sorry you do, it can't be helping that you are finding life so hard at the moment

• Talking to myself in the toilet during a bowel movement (ok these two are not officially side affects but it feels like they should be).

I used to drum my heels to distract myself from the pain, and pooed into the Sitzbath filled with lukewarm water for a good few weeks.

• Leathery hands and skin peeling away.

My hands weren't affected

•  Night sweats.

Yes, and my sweat smelt peculiar too.  That stopped fairly quickly.

I have never gone back to exactly as I was before, there is definitely a new normal for me but it is one that I can happily live with.  I am so sorry that you are having a bad day but I can reassure you that a lot of what you are upset about now will improve and life will look a lot brighter.

A trip to Maggie's sounds like a really good idea, I went when I was first diagnosed and it really is the most wonderful place staffed by cancer professionals.

Sending a big hug

Irene xx

Hi LCraig ,

I’m so sorry you’re facing all of these challenges right now. Please believe you will retrieve if not all then a large portion of your ‘old self’. You’re at a particularly challenging stage right now & if you’re feeling up to it I think a trip to the wonderful Maggies is a great idea. They not only offer advice & a safe, relaxing space to sit & chat but also some therapeutic services that you may find helpful.

I did really well throughout my actual treatment, baring in mind that mine was 23 days opposed to the standard 28 days, I suffered the awful fatigue throughout treatment but on day 23 things really began kicking off then for 11 days after I felt like I’d been hit by a bus & then it had reversed back over me again! From day 12 post treatment things began slowly improving & a few days later I really began to feel I’d turned a corner. I would go a couple of days feeling good then I’d be laid flat for a day but the good days soon began outweighing the bad & hopefully you’ll soon be feeling the same. 

As Irene has mentioned, a lot of the lack of control bowel wise is down to radiation damage internally as well as externally, you will be as raw inside as you are outside, this will come back as you heal. I didn’t suffer diarrhoea but did find in the early days as soon as I was up on my feet out of bed in the mornings I had to dash as I couldn’t hold on even for 5 minutes, I also suffered some leakage but again this improved as I healed. Now 7 years on I’ve full control & everything, except for a little stenosis, are good & as near to normal as I could wish for. 

Things will improve for you, it’s still very early days & I think we all have been impatient for things to get back to normal but please believe you’ll get there, things may be a little different but you will recover from this. 

Sending lots of healing thoughts your way. 

Nicola

Hi Heather09 ,

Thank you for your reply. I finished on Friday 14th Feb’. My partner, who is amazing by the way, reminds me very gently that we are only talking 10 days since I finished.

There are definitely some improvements in the pain I’m feeling when going to the toilet. But I know I am too eager to have more improvements more quickly. What I really need are relaxation skills.

Thank you Irene75359 ,

i really appreciate your insight. I could feel my anxiety levels reducing as I was reading your post.

I was so naive to think this would all just be a walk in the park. Having said that I really think I am now earning by Cub Scout points.

Xx

Thank you Nikki65 , once again for your insight. Empathy and for sharing it with me.

I really can feel my anxiety levels lifting. I didn’t get to Maggie’s today. I have an O/T appointment at the hospital on Thursday and I’ll use that appointment as an opportunity to pop in then.

Thank you to you and other community champions. You are all worth your weight in gold.

x

Oh you are still so early days. These things will slowly and steadily get better. I’m definitely not fully there yet but I can feel things gradually improving! I promise you in a few weeks you’ll be reassuring people on here that things do improve! 

 LCraig  I finished treatment 6 weeks ago and can assure things do get better... You will start seeing positive improvements.

I started the fodmap protocol, the second week after treatment had ended and that really helped with my bowel movements - if you've not explored this might be worth researching and seeing if it could help you too.  

I am still using water wipes as my bottom got sore after using normal paper - I was enjoying the itch relief if I'm honest but in hindsight it was just aggregating the situation.  I am absolutely still fatigued and trying every day to build up my strength a little more - walking more and today I did 10 minutes on the cross-trainer.

I think the sweats is our body doing all it can to detox from the nasty chemo but I'm female and 52 so also expect it to be menopausal.... 

I hope you can see glimmers of hope.... You can only go forwards, things will get better...  Be kind to yourself... and try not to get too frustrated...  it's not worth the energy.... 

Take care and keep us posted.

Ali x