Mum Recently Diagnosed

Hi Pintsizeprincess I'm sorry your mum is having a rough time. She is at the worst stage at the moment. I cut green veg from my diet and that helped with my stomach cramps. I personally didn't but I know quite a few on here would go to the toilet in the sitz bath and found the going in the water helped. I remember how painful having a poo was, it's like passing razor blades dipped in acid. I don't know what creams your mum has, the strongest one I had was flaminal forte, I also used instillagel occasionally it stings when you put it on but then everything goes numb for a bit. I have seen some people on here had polymer dressings. I would ring your specialised nurse and see if they can send something out to help with the skin mine were very good at that, don't wait until October. Your mum should start turning a corner soon though. Also if your mum is comfortable with it go completely commando at home. Sending hugs you and your mum. Xx

Thanks so much, for your help and advice. Like everybody on this forum it’s something. You hope you will never have to think about, but seeing my Mum in so much pain and feeling so down is awful, so everybody’s experience in dealing with this awful situation and advice is very much appreciated. 
Mum has been given various creams but nothing so far has seemed to help despite her moisturizing and getting the area ready well before treatment.  

Hello Pintsizeprincess 

I only have to read a post like this about your poor Mum and it all comes flooding back.  I also had severe side effects and was under the tissue viability nurse for several weeks after treatment ended.  But, and this is important to remember, here I am with several years down the line, I have a new 'normal' but nothing like the weeks following the end of treatment. she might think this will never end but it will.

In the meantime Oramorph will definitely help with the pain, but I found out to my cost it does cause constipation along with co-codamol and morphine capsules.  So she needs to be taking (at the very least) Laxido (one, if not two depending on her morphine dosage) every day alongside the drugs.  Going without any underwear is the way to go and resting flat on her back for as long as she needs to.  And it isn't too late for her to get a Sitzbath if she doesn't already have one, a portable bidet (Amazon) that sits on the loo and can be used from bathing the nether regions to using as a loo - going in water is somehow less painful than straining over a loo.  It is easily emptied and disinfected and was an absolute lifeline for me.

And I hope that she recovers quickly, please do come back and let us know how everything goes.

Big hug to your Mum (and you)

Irene xx 

Thanks Irene, really appreciate your help and advice. 
the oncologist told my mum her symptoms will probably peak at week 10, and we’re now week 7 so just hoping it’s not going to get much worse for her as she is in so much pain and discomfort now. 
she also finds lying down flat really hard as since her diagnosis she has had a very bad back ache, so she’s struggling to get comfortable doing anything. Xx 

Hi Pintsizeprincess , I see you’ve already had some great advice from Irene & Bungle all of which I would definitely echo but I just wanted to jump on to say I’m so sorry your mum is in so much discomfort & it’s obvious how distressing this is for you too.

If your mum gets any relief from the oramorph & wanted to continue with it it’s imperative that she takes something like Movicol or Laxido alongside as Irene has said as this will almost definitely be the cause of her constipation, frequent loo visits are bad enough but nobody that has been through this treatment wants to be constipated believe me. 

Try & assure you mum that this is short term, although I remember only too well how there feels like there’s no end in sight when you’re in the midst of it, once the side effects peak she’ll begin healing & that tends to happen quite quickly & try not to worry too much if you find your mum sleeps a lot over the next couple of weeks, I was completely wiped out but also that’s when our bodies repair themselves. 

Remember we’re always here to support you however we can. Sending lots of healing thoughts to you both. 

Nicola 

Thanks Nicola, this is also great advice thank you. Mum is shattered because she is only sleeping around 2-3 hours a night because of the pain and discomfort, so trying to nap during the day when she can, but as mentioned before finds it difficult laying down as she has such a bad back ache too.  

Hoping day by day she will start to feel better, and that all of this will be worth it, and this horrible thing has gone away. Xx 

Hi again Pintsizeprincess , regarding your mums back pain, I’ve suffered with lower back pain for the last 3-4 years & I find laying on my back with a sturdy pillow or cushion under my knees eases it a lot. I find it difficult laying on my sides due to hip pain but when I try I pop a cushion between my knees. I had an MRI on my foot recently ahead of planned surgery & had to lay on my back throughout, the first thing the radiologist did was place a support under my knees as he said it eases any pressure on your back to lay that way. Anything is worth a try. 

Nicola 

Thanks Nicola, great advice I will pass all this information onto my Mum xx 

Hello I’ve posted on here recently and have been given some invaluable advice. My mum is 4 weeks into her treatment and is in a lot of pain down below , she has been given lots of creams etc from the nurses . I just hate seeing her like this struggling trying to keep her positive but I keep telling her I’m so proud of her and everyday she manages is a day closer to treatment ending . 

It’s awful isn’t it. They have given Mum morphine but it’s either making her very sick or constipated. My mums a pretty rough cookie, but she said this is by far the worse pain she has ever experienced with the sores.