Incontinence recommendations

Hi,

there are lots of options available on-line, some I have noticed promise to be leak and odour free. I can’t comment on the success or otherwise because, as of yet I have not needed to use them.m, but accept that time may come with treatment or simply with age.

 The advice I would give is for your grandad to seek advice and support from his GP. I guess it must be very embarrassing and distressing for him but I really do not think he should suffer in silence. He may qualify for free pads etc. The GP may also be able to offer medication that may help. Finally, if the GP cannot actually offer any practical support as above, they may at least be able to suggest best pad options.

I really get how awful this must be for your grandad, I wish him well and I really hope he able to gain control again at some point in the future.

Neil.

Hi Neil,

Thank you for replying.

• I will suggest to him about speaking to his GP. He has a hospital appointment tomorrow where they will be discussing treatment start dates. My understanding is that surgery isn't an option for removing the tumour but perhaps radiotherapy 5 days a week. I bought him a cushion to hopefully help with his discomfort. There are so many options for incontinence products but I believe they tend to be more for urine leakages. Thanks for your help.

We are hopeful for treatment to start soon. He had prostate cancer a few years ago and radiotherapy was successful in treating that

Louise

Hi there, just wanted to let you know my mum suffered from faecal incontinence 6 months ago. She is 3 months post treatment and now does not have any issues. I know everyone is different, but I hope he can keep positive.

Our doctor was not able to help us, I am not sure if different areas of the country offer different support, but our oncologist nurse put us on the waiting list for the incontinence referral team, it took a few weeks to have someone get in touch, but when they did, they were brilliant.

You are right, there is so much stuff out there, i made lots of mistakes whilst i waited for the referral to come through, which were upsetting at the time as this is difficult to deal with enough, let alone the dignity of thinking you need to wear nappies which is hard.

I am not sure if men and women are different in terms of comfort, but my mum found these the best (she did not have urine problems though so may be different to your grandad)

- Tena Proskin Fix (Fixation pant)

- Tena Proskin Comfort - Normal

Discreet, soft and absorbent enough that poo is contained.

I also recommend the customer service i got from this company: https://www.ageukincontinence.co.uk

I would def have a chat with them. Many pads are designed for bed bound people, so if your grandad wants to keep active which is great if he does, finding the right option will help with his confidence. I Hope this helps x

Thank you for replying. I'm pleased to hear your mum no longer has issues with this. We are hoping that the treatment will help address this as it's only become an issue in the last week. I have sent message to the customer service team as you suggested and am waiting to hear back

Hello Peapowered

I can't help, I am sorry, my experience is limited to wearing Tena pants 'in case' when I had a very upset stomach after treatment.  You have had a couple of really helpful replies already and my reply is to welcome you and can I also say how caring you are in looking out for your grandfather.  There is a forum for family  https://community.macmillan.org.uk/cancer_experiences/family-and-friends-forum/ but if you want to know about anal cancer specifically this is the best place.

Best of luck in your endeavours to help him.

Irene xx

Thank you. Today it sounds as though the plan is to be given 5 days of stronger radiotherapy after Christmas, rather than the 5 weeks we had been initially given the impression he would receive. The word palliative was used which leads me to believe the outlook is not too positive at this point.

Hello Peapowered

I am really so sorry to hear that - it sounds as though he has secondaries elsewhere, in which case they would perhaps forego the five weeks standard treatment.  Palliative is such an emotive word when in fact some people (and I should stress some) live with cancer having palliative treatment for many years.

Also, treatment is changing all the time and and new trials start up all the time - I don't believe there is one for advanced anal cancer at the moment but it he should certainly ask his oncologist who may know more.

Wishing him the very best of luck going forward.  And we are always here to support you (and him) should you need it.

Irene xx

You are correct, palliative does envoke a lot of emotions. I am under the impression that it hasn't spread but is aggressive. There's a lot of big medical words that get used and understandably he doesn't know what they all mean. They do sound like a lot of gibberish! Thanks for your kind words of support x

Hello Peapowered

I must admit to being rather shocked here, certainly not by you but what your grandfather has been told.  Is he very elderly or unfit?  I should stress I have no medical knowledge or training, only what I have gleaned on here, but many of us (I was one) started the standard treatment in their seventies.

I would also say that he is entitled to ask for a second opinion.  I don't know where he is but certainly when I was being treated there were people there who seemed a lot older than me, so age didn't seem a barrier.  It would also be helpful if someone could accompany him to his meetings, I was treated during COVID and my husband couldn't accompany me at all but my consultant had absolutely no problem in having my phone on loudspeaker on her desk whilst my husband sat in the car park but still involved in the meeting.

And it may be in common with many people your grandfather doesn't want to question the oncologist.  Most of us were so shell-shocked in the beginning that was the case for us, but three years down the line I don't hesitate to ask them to make clear the things I don't understand.

Please let us know how he gets on.

Irene xx

That must have been extremely difficult being treated during COVID!

He has made it to the lovely age of 93 but gets told he looks mid 70s. Still mobile, all his faculties, even drives(!) My mum has been to the appointments. I think because I have lived with someone with terminal cancer in the past, I am a bit more familiar with terminology/ questions to ask. I think his age means an opp isn't viable and therefore that is the reason x