Just Diagnosed

shirley99

My dad has bowel cancer

Hi. I’m new to this site. My dad is just over 70 and has in the last few days been diagnosed with bowel cancer. A large growth has been found and although he’s not in pain he is not able to go to the toilet properly. I have spent hours and hours on the net looking for answers. And most of what I have read is positive. I have young children and live 100 miles away from my parents so haven’t been able to attend appointments with them. I am however making arrangements to go to the next one where we’ll be told the stage and treatment options. My mum tells me my dad has lost a lot of weight and I can tell when I speak to him he is not himself. He is very tired and has no energy. I feel emotionally exhausted already and this is just the beginning. I’m scared of what he’ll look like when I see him as when I last saw him a couple of months ago he was his normal self. He seems to have deteriorated quickly and I hope this isn’t a bad sign. We can’t change what is already in existence but I guess I am just on here for moral support.

cathymac

I am so sorry to hear this!
I understand only too well what your going through. My Dad is 79 and was diagnosed in April this year with advanced rectal cancer. Even though it has t spread too far the radiotherapy didn’t work so it’s in operative and the Chemotherapy is too harsh for him as he’s so frail from the horrible cancer. The radiotherapy put him in hospital because he lost nearly 3 stone, had constant diarrhoea so was exhausted before he even started treatment. We’ve now been told palliative care which makes me so mad. Negative oncologist doesn’t help either.
I also live 352 miles away so have struggled not being at all the appointments.
I’m currently on here looking at other treatment options that aren’t on the nhs.
It’s an awful time for every one and it’s been the same with my dad. He looks so different now and it’s like it’s not him.
💖💖

Gypsy

Oh @shirley99 and @cathymac
I am so sorry to read that your respective Dads are so poorly. I am so sorry too that you feel angry about the palliative care @cathymac. I believe it can be very good and helps people to feel better, concentrating on relieving symptoms while not able to be curative. I will hope that it will be so for your Dad and for yours too @shirley99. Unfortunately, the treatment for this cancer can be harsh but the intentions are good. I can understand you being angry at the cancer.
Hugs.:x::x:

shirley99

Thank you so much. What a horrible disease this is. I do believe the NHS do their best and we have to keep faith that we are all in good hands.

Quote from @Gypsy:
Oh @shirley99 and @cathymac
I am so sorry to read that your respective Dads are so poorly. I am so sorry too that you feel angry about the palliative care @cathymac. I believe it can be very good and helps people to feel better, concentrating on relieving symptoms while not able to be curative. I will hope that it will be so for your Dad and for yours too @shirley99. Unfortunately, the treatment for this cancer can be harsh but the intentions are good. I can understand you being angry at the cancer.
Hugs.

cathymac

In reply to the responses in here. Has anyone ever ignored the oncologist advice and started a treatment? I know my dad is frail but does it need to be aggressive chemotherapy?
Are there not milder versions to just keep it at bay?
The oncologist says dad is too frail for chemotherapy so there is no treatment plan now.
I’m struggling to accept this!
I’m reading about targeted therapies now and clinical trials. How come oncologists don’t even mention these?

Gypsy

Hi @cathymac
I can't give you any answers. I'm not experienced or knowledgeable enough. I've not heard of any milder chemo options- they all have side effects but some people are less affected than others. The targeted therapies have side effects too so far as I know. Yes, there are clinical trials and I guess you could find out whether your Dad fits the criteria for any on the go just now. The thing is whether your Dad wants to put himself through these things when he has been through the mill already and is frail and also elderly. However, an oncologist won't risk a treatment that they know will just make the patient even more ill whatever age they are- and the treatment he had has already made him ill as you say. Everything depends upon fitness to undergo the treatment. But these questions need to be put to the oncologist. But ultimately, it also depends upon how your Dad feels about it all, doesn't it?
I truly hope that you reach a point where you feel more at peace. I hope that your dear Dad will be able to regain some weight and feel comfortable.
:x::x::x::x:

cathymac

Thanks for the reply @Gypsy.
I’m not at peace with any of it I’m afraid.
For some reason I have this gut feeling that something has been missed due to budgeting on the
Nhs.
My Dad isn’t due to even see the oncologist again as McMillan take over with palliative care.
I don’t even know if chemotherapy would do anything but I just want my Dad to live longer than the 6-8 mths they’ve said.

sweetcheeks

@cathymac , I’m so sorry to read your thread, I wish I had an answer for you , this is truly a devastating disease, that changes our lives instantly,
Lots of love
:x::x:

Baxter2

Hi @shirley99

I'm sorry to read your update on your dads cancer. There are many of us who have had treatment for liver and lung mets and also chemo. It would be worth getting a good understanding of the rationale for the decisions made by the oncologist. Are you very certain that they said 'palliative care' as opposed to 'palliative chemo' for example? I'm on what's called palliative chemo (although I hate the term!) since it's not going to cure me. Many call it maintenance chemo which I much prefer!

Age is just a number and I know decisions are probably made based on an individuals overall health and ability to cope with chemotherapy as well as potential to improve overall health and quality of life rather than their age. Write down all your questions, queries and points and request a further appointment to discuss these points. How does your dad feel about all of this?

Sending love,

K💚💛💜💙❤️

Gypsy

Hi again @shirley99 ,
I am truly sorry for all your hurt, anger and upset. It is useless for me to pontificate further as I can only give my own 'take' on things and not sure that is helpful to you. One thing though that was said to me during the course of my treatment for advanced bowel cancer was :
'there comes a point where there is nothing more we can do'.
I would urge you though to go and talk about all of this to someone- your GP or perhaps Maggies if you have one near you. I think it might help you.
Thinking of you and your Dad.:x::x:

shirley99

Thank you so much for your support. We do have a good support network now that we have started telling friends and family. And yes, there will come a point where we will be told there is nothing more that can be done. As yet we don’t even know whether he will have any treatment. Our aim is to keep him comfortable and happy now xxx

Quote from @Gypsy:
Hi again @shirley99 ,
I am truly sorry for all your hurt, anger and upset. It is useless for me to pontificate further as I can only give my own 'take' on things and not sure that is helpful to you. One thing though that was said to me during the course of my treatment for advanced bowel cancer was :
'there comes a point where there is nothing more we can do'.
I would urge you though to go and talk about all of this to someone- your GP or perhaps Maggies if you have one near you. I think it might help you.
Thinking of you and your Dad.

shirley99

I’m fairly certain the doctor said palliative care which will or will not involve chemo depending on the oncologists assessment. I’m sure I’m being paranoid but he didn’t sound hopeful. As Dad is already weak I’m not sure that he’d cope. On the other hand it could relieve his symptoms. I’ll hopefully be able to attend the oncologist appointment.

He has good days and bad days. He’s always been healthy so this has hit him hard. He says he’s ok but I don’t think he is coping that well deep down.

Life is unbelievably cruel at times. Thank you for your kind words xxx

Quote from @Baxter2:
Hi @shirley99

I'm sorry to read your update on your dads cancer. There are many of us who have had treatment for liver and lung mets and also chemo. It would be worth getting a good understanding of the rationale for the decisions made by the oncologist. Are you very certain that they said 'palliative care' as opposed to 'palliative chemo' for example? I'm on what's called palliative chemo (although I hate the term!) since it's not going to cure me. Many call it maintenance chemo which I much prefer!

Age is just a number and I know decisions are probably made based on an individuals overall health and ability to cope with chemotherapy as well as potential to improve overall health and quality of life rather than their age. Write down all your questions, queries and points and request a further appointment to discuss these points. How does your dad feel about all of this?

Sending love,

K💚💛💜💙❤️

Gypsy

Hi @shirley99 . I think that since he is now under the care of MacMillan palliative team then the care will involve doing all they can to relieve symptoms and make him feel as well as he can possibly be.
Palliative treatment might involve chemo but you say above that this has been ruled out at present due to your Dad's frailty and that he is not due to see the oncologist again just now?They will only do what is in his best interests to anyway. They don't give chemo lightly, that is for certain and someone really does have to be well enough to undergo it.
Thinking of you.:x::x::x:

shirley99

@cathymac I know exactly how you feel. I think as our dads our older they May come to the conclusion that there isn’t enough benefit in having treatment against quality of life. I am fearful that we will see the Oncol and they will say the same to us. Ultimately I don’t want Dad to suffer. He is already weak. If there is a form of chemo that they think will give him an extra year or two then great. But if it’s only going to give him a couple of months we need to weigh up whether it’s worth putting him through that. I totally understand how you feel. I feel like I’m just going around in circles at the moment xxx

Quote from @Gypsy:
Hi @shirley99 . I think that since he is now under the care of MacMillan palliative team then the care will involve doing all they can to relieve symptoms and make him feel as well as he can possibly be.
Palliative treatment might involve chemo but you say above that this has been ruled out at present due to your Dad's frailty and that he is not due to see the oncologist again just now?They will only do what is in his best interests to anyway. They don't give chemo lightly, that is for certain and someone really does have to be well enough to undergo it.
Thinking of you.
Quote from @Gypsy:
Hi @shirley99 . I think that since he is now under the care of MacMillan palliative team then the care will involve doing all they can to relieve symptoms and make him feel as well as he can possibly be.
Palliative treatment might involve chemo but you say above that this has been ruled out at present due to your Dad's frailty and that he is not due to see the oncologist again just now?They will only do what is in his best interests to anyway. They don't give chemo lightly, that is for certain and someone really does have to be well enough to undergo it.
Thinking of you.
Quote from @cathymac:
Thanks for the reply @Gypsy.
I’m not at peace with any of it I’m afraid.
For some reason I have this gut feeling that something has been missed due to budgeting on the
Nhs.
My Dad isn’t due to even see the oncologist again as McMillan take over with palliative care.
I don’t even know if chemotherapy would do anything but I just want my Dad to live longer than the 6-8 mths they’ve said.
Quote from @cathymac:
Thanks for the reply @Gypsy.
I’m not at peace with any of it I’m afraid.
For some reason I have this gut feeling that something has been missed due to budgeting on the
Nhs.
My Dad isn’t due to even see the oncologist again as McMillan take over with palliative care.
I don’t even know if chemotherapy would do anything but I just want my Dad to live longer than the 6-8 mths they’ve said.

cathymac

@shirley99
Thanks for the reply. I feel like we are in similar situations with our dads.
My dad is pretty weak at the moment and it’s heartbreaking to see. I live in Newcastle and my parents live in Portsmouth so I too find the distance thing incredibly hard. I have 2 young children too so it’s not easy to just pack up and drive down.
I hate to see my dad in so much discomfort and witness him getting weaker. We had our hopes pinned on surgery or for some reason I thought they’d be a chemotherapy that he could try that would keep it at bay for an extra few years.
Looking into it there’s a lot of therapies and chemotherapy drugs not funded on the nhs. I honestly think my dad would have been better off if he had had private health care.
Sending hugs to your family ❤️❤️

shirley99

Sounds like we are in exactly the same boat. Unfortunately. Dad had no symptoms until 3 months ago by which time I think it was already too late. I agree about private healthcare, if it’s an option which of course it isn’t for so many. Please do keep in touch. I have found this group just so supportive. That’s the other thing I think is invaluable - a good support network ❤️❤️❤️

Quote from @cathymac:
@shirley99
Thanks for the reply. I feel like we are in similar situations with our dads.
My dad is pretty weak at the moment and it’s heartbreaking to see. I live in Newcastle and my parents live in Portsmouth so I too find the distance thing incredibly hard. I have 2 young children too so it’s not easy to just pack up and drive down.
I hate to see my dad in so much discomfort and witness him getting weaker. We had our hopes pinned on surgery or for some reason I thought they’d be a chemotherapy that he could try that would keep it at bay for an extra few years.
Looking into it there’s a lot of therapies and chemotherapy drugs not funded on the nhs. I honestly think my dad would have been better off if he had had private health care.
Sending hugs to your family ❤️❤️

Gypsy

Hi,
I am so truly sorry about it all @cathymac and @shirley99. I think I have got muddled between the two of you saying similar things, so very sorry about that. I hope that everything that can be done will be done for both your Dads. Shirley, I wouldn't rule out the chemo as your Dad has not seen the onco yet? Sadly, people are sometimes diagnosed with advanced cancer having had few or no symptoms. They can only do the bowel surgery to remove the primary tumour if the mets are under control and they do use chemo for that to hopefully knock them back. (You can't have chemo within at least 6 weeks of surgery (before or after) due to the high risk of infection with a compromised immune system so they need to know that the mets are not going to grow to much during those periods etc). There are people who have been told initially that it is inoperable but who have become operable after treatment.
I don't know what the 'lot of therapies and chemotherapy drugs not funded on the NHS' are @cathymac but I truly hope that something is available for your Dad if that is what you all want. It is a quality of life thing though and age doesn't come into it but fitness for treatment. That at least is what I was always told.
My treatment on the NHS has always been brilliant.
Thinking of you and do mean that.
:x::x::x::x:

shirley99

@Gypsy that’s really good information to know, thank you :x::x::x::x:

shirley99

Hi all. So I have just spent a good few days with my Dad and he is stable. He is eating small amounts, still going to the toilet on his own and showering on his own. He now has an adjustable bed.at home so he is a bit more comfortable. The nurses have started to come. We are still waiting for an oncology appointment but the fact that this has not come through yet suggests to me that he won't have chemo. I think it would have been started by now if he was going to have it. He has lost some more weight. But thank God he is not in pain and I want to keep it that way. I don't think he would cope with chemo and I don't think it is worth it given that it would have serious side effects that I know he would not cope with. I think our aim now is to keep him comfortable and see him as much as possible. I sympathise with all of you so much, and I have found this forum to be such a good release for me. What a cruel disease. No matter where I am or what I'm doing it's constantly with me. It's my last thought at night and my first thought every morning. He was always a cheeky chappy and still is, especially when the nurses come. He can be very naughty at times and is full of innuendos! I think it keeps him going, and the rest of us! Thoughts are with all of you that are going through this :x::x::x:

KatieR

Hello @shirley99 I totally agree with all the replies
Have you tried to improve your Dads health There are so many drinks nowadays that have all the nutrition that you need Plus vitamins and supplements that people who have no appetite can drink
I wouldn’t experiment with fruit smoothies cos they may upset the bowel
Im sure the Macmillan nurses could advise you Things have improved a lot since Complan. And Slippery Elm Food !
Cath :x::x:

shirley99

Yes he has nutrition drinks. But he probably has a third of one at a time. He is a bit stubborn and complains that they don’t taste very nice! But he has a few sips at least. The stubbornness doesn’t help as he wants to do things his way. He’ll listen to the doctors and nurses so we sometimes have a quiet word with them and they relay things for us.