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Beating bowel cancer together

Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

MetalliKat

Drastic weight loss

Hi everyone
I haven’t posted for a while and thought I reach out again because feeling a bit helpless and lost.

My dad is in his mid 60s and was given a terminal diagnosis about a year ago. He decided at the time not to have any more treatment and just to try and be as comfortable as he can without the fuzz and sickness of chemo to give him extra time.

The last few months he’s lost an awful lot of weight. He’s eating well but the pain and diarrhoea means he’s not keeping the nutrition.

Has anyone got any advice? His palliative care nurse is trying to help with pain and symptoms management but nothing is denting it.

K :x:

Liz Blakelands

@MetalliKat
Hi

I'm really sorry that things are so hard for your Dad and yourself. It is very difficult when you love someone to see them gradually succumb to a disease.

Pain management is crucial because nobody can feel well when they are in pain. Try to politely but firmly push for specialist pain relief. There are lots of different drugs and ways that pain can be controlled.

There is a separate care giving section of the forum that you may wish to join. Just go to Topics on menu, then request to join group.

Sending a massive hug
Liz :x::x:

MetalliKat
Quote from @Liz Blakelands:
@MetalliKat
Hi

I'm really sorry that things are so hard for your Dad and yourself. It is very difficult when you love someone to see them gradually succumb to a disease.

Pain management is crucial because nobody can feel well when they are in pain. Try to politely but firmly push for specialist pain relief. There are lots of different drugs and ways that pain can be controlled.

There is a separate care giving section of the forum that you may wish to join. Just go to Topics on menu, then request to join group.

Sending a massive hug
Liz

I feel like we're still at the trial and error phase with pain relief. The palliative care nurse only comes once every 6 weeks because they are so stretched and we've established my dad can't have morphine. The pain comes when he has to go to the loo and it's disheartening to hear the nurse say that what he's experiencing is part of the parcel of the latter stages of bowel cancer.

I requested to join yesterday so just waiting for approval.

Thank you for replying :x:

Richard Staff (Support and Information)

Hello @MetalliKat I'm very sorry to hear about the pain your father is experiencing. As has been said pain management is really important and it sounds as if you've not had the best support with this.

As well as the advice from forum members I'd also recommend getting in touch with our Ask the Nurse service to see what information they can provide. You can do this by visiting www.bowelcanceruk.org.uk/how-we-can-help/ask-the-nurse/

Take care, Richard

Tiffany

@MetalliKat

Hi there. So sorry that your dad is struggling so much. My husband has had his fair share of symptoms and side effects including drastic weight loss and considerable pain. Whilst he was in hospital he was looked after pretty well and was fed intravenously with a TPN feed through the night giving him around 2200 calories. He now does this himself at home. He also had nutrition drinks such as Ensure and Fortisip that you can get on prescription if you ask your GP.

Are you getting palliative care through the GP or local hospice? I have to say that our local hospice have been incredible and offer an amazing service. If you haven't gone down this route I would definitely asked to be referred as they have been great. My husband is now on pain patches and they see him weekly for various therapies.

Lastly, if you feel that you are not getting the service that your dad needs then complain to either the practice manager of your GP service or if via hospital the PALS dept as no-one should be suffering like this and sometimes, unfortunately, patients fall through the cracks and we have to fight tooth and nail to get what they need.

I really hope that he can get his pain under control and things become more manageable. Let me know if I can help in any other way via PM (have been around the cancer block a few times unfortunately!). Lots of love, Tiffany :x::x:

Ali

@MetalliKat so sorry to hear about your Dad and the pain/ weight loss he has experienced. It seems others have offered you good advice and I know it is difficult to have to fight for what you need but that seems to be the situation these days unless you are very lucky. I hope your Dad manages to get something to help him and can maybe take some of the nutritional drinks to help with his weight loss. May even help when going to the loo. He is lucky he has you looking out for him and caring so much and I am sure he is grateful.

Take care

Ali :x::x: