Living with cancer (and madwullie memorial thread)

[Donathan]

Really awful news TDN. I'm really sorry to hear about your loss but hope that memories of the better times with Amanda will give you some comfort.

 

Also, popped in here to ask if anyone has heard from Jimi?

[kingjoey]

That was a difficult read. Sorry for your loss TDN.

[Thistle_do_nicely]

Thank you to all, hugely appreciate the kind words. Will get through a day at a time.

Plenty of great memories even after her diagnosis too, bringing her up coffees and scratching her back and all sorts of the wee things. I've written a fair few memories down on my phone notes and all, which helped.

[SweeperDee]

Really awful news TDN. I'm really sorry to hear about your loss but hope that memories of the better times with Amanda will give you some comfort.
 
Also, popped in here to ask if anyone has heard from Jimi?

I’d also appreciate an update on Jimi, if anyone has any connection to him.

[SweeperDee]

Thank you to all, hugely appreciate the kind words. Will get through a day at a time.
Plenty of great memories even after her diagnosis too, bringing her up coffees and scratching her back and all sorts of the wee things. I've written a fair few memories down on my phone notes and all, which helped.

That’s brilliant to hear. That’s all you can do, take it one day at a time. Writing down the good times is a fantastic idea, definitely keep on with that. You’d be able to fill a book no doubt.

[Thistle_do_nicely]

On 29/07/2021 at 22:03, Day of the Lords said:

My old man's bowel cancer came back a couple of months ago and he's gone downhill far more quickly than I would have believed possible. My sister phoned me today saying I needed to get up to the house, as the GP had been up and basically said there is nothing that can be done other than pain relief. I don't know the medical ins and outs, but basically any nutrition he eats is only strengthening the cancer, with the result that he's getting weaker and weaker and he's noticeably thinner on a weekly basis. We've been told to expect it to be over in less than a fortnight. I used to do Macmillan Welfare Rights work and have worked with families in this situation hundreds of times, I suppose it feels completely surreal that we're in that situation now. My mum and my sister are in bits, I'm trying to hold it together and we're all having to sit there absolutely fucking helpless as our Dad slowly wastes away. 

Cancer is an utter arsehole of a disease. 

Im kind of trawling through the thread (will echo what others have said, hope Jimi is alright) and this really hits home, metastatic colorectal cancer is every bit as nasty as it sounds; Amanda was more or less fine/as normal as could be in July, got worse and out of breath more often in August, in and out of the A&E by September and slipped away in October. Its maddening. Seemed to be every time the chemo stopped she'd start getting lung clots or other problems really sharply, too.

Kind of weirdly glad to read that about eating strengthening the cancer if you bear with me, amanda was a bit vague with me (everyone actually, as far as i know) about what was going on over the last few months. I absolutely understand her for it, we all think she was shielding everyone, including me, from the details for as long as she could manage - i was still holding out hope for surgery or some drug to treat it until a nurse sat the family down and told us amanda wanted us all to know how bad things really were.

The eating thing explains a lot with her stoma getting worse and worse so damn quickly. I saw it helping her get a bath a few weeks back, and ill spare the details but it was a bit of a numb, out of body experience to see first hand what the cancer was doing to her.

Dont think i posted at the time but im unbelievably sorry you and your family had to go through something like that with your dad. You're not alone in it, for whatever thats worth.

Cancer is indeed a complete arsehole of a disease, and im living in hope that i get to see humanity get rid of *all* forms of it.

Edited October 27, 2022 by Thistle_do_nicely

[Bully Wee Villa]

Very sorry for your loss TDN.

[House Bartender]

That's been a tough couple of pages to read. So sad to read of all Amanda and yourself have been through TDN, but heartening to pick up on the positivity. It all kinda puts the weekend results in their place in the scheme of things. All the best TDN. 

And again, hope there's a positive from Jimi....

[superwell87]

Really sorry to hear of your loss TDN. 

[Inanimate Carbon Rod]

I feel daft in comparison to what TDN is writing with my own issue but im broken and feel like this is the best way to say what i feel. TDN im so sorry for your loss. 
My dad is my hero, all through my life hes been the strongest person, disabled since I was 4/5, lived every day of his life in pain, but so strong, so resilient and genuinely the best person I know, never says a bad word about anyone, never hurt anyone, so straight laced he wouldnt even take a hooky amazon fire stick, doesnt drink, doesnt smoke but found out he has incurable liver cancer. Its broken me, my family, im in so much pain emotionally at the thought of losing my best friend. Im sorry for being selfish and saying ‘me, i’m’ etc just trying vent. We had hope that he could be given ‘TACE’ and hopefully prolong his life by a couple of years, but despite being told he could see a specialist next week, we’ve been told we cant even see one until the end of November at least, even then its a ‘telephone consultation’. Im terrified that it will be too late, my dad seems so dejected by the news its just ripped us all in two. Feel like its knocked the fight out of him, he just seems like all the positive fight has gone. Im trying to find a private option but i dont know if he’ll go for that, the way cancer patients are just passed aside, god its awful. Why is it such a mess? Whats going on with this world?

Edited November 3, 2022 by Inanimate Carbon Rod

[Hard Graft]

ICR - thoughts very much with you. Cancer treatment at the moment is appalling as is much of the NHS. Try and stay strong for your old man.

[TxRover]

2 hours ago, Inanimate Carbon Rod said:

I feel daft in comparison to what TDN is writing with my own issue but im broken and feel like this is the best way to say what i feel. TDN im so sorry for your loss. 
My dad is my hero, all through my life hes been the strongest person, disabled since I was 4/5, lived every day of his life in pain, but so strong, so resilient and genuinely the best person I know, never says a bad word about anyone, never hurt anyone, so straight laced he wouldnt even take a hooky amazon fire stick, doesnt drink, doesnt smoke but found out he has incurable liver cancer. Its broken me, my family, im in so much pain emotionally at the thought of losing my best friend. Im sorry for being selfish and saying ‘me, i’m’ etc just trying vent. We had hope that he could be given ‘TACE’ and hopefully prolong his life by a couple of years, but despite being told he could see a specialist next week, we’ve been told we cant even see one until the end of November at least, even then its a ‘telephone consultation’. Im terrified that it will be too late, my dad seems so dejected by the news its just ripped us all in two. Feel like its knocked the fight out of him, he just seems like all the positive fight has gone. Im trying to find a private option but i dont know if he’ll go for that, the way cancer patients are just passed aside, god its awful. Why is it such a mess? Whats going on with this world?

This is where everything he showed you will come into use. Reread what you said, strong, resilient, never a bad word, etc…and remember he showed you how to be all that. It’s a terrible bit of news, and the delay in any assistance is abominable, but you now can show him how well he raised you as you can help him see past the blinders of this sudden news and look for the chances to maximize whatever time you have now.

Here’s an idea that a coworker used when their parent was facing a similar crisis. She visited him daily, taking her camera, and recorded him talking about his life, the people he knew and the things he did. In the end it provided a great comfort to both the whole family she shared it with, and to him by reminding him of all the great things that had occurred and all the people he had influenced and helped. It won’t be easy for you no matter what you do, but you can make it better for him, as a partial payment for all he’s meant to you!

I wish there was a better answer to your questions, but unfortunately there isn’t. Keep fighting to get him the help he so richly deserves, and meanwhile keep learning from his resilience and showing him yours. Stay strong, not just for you, but also for him and the family.

Edited November 3, 2022 by TxRover

[alta-pete]

@Inanimate Carbon Rod a horrible situation. There’s never the right time, the right way or the right place to have to deal with what you’re all now facing. 

You know yourself the strength and integrity your dad has. And I think that has also been instilled in you. Talk to him, tell him that, he’ll tell you everything you need to know.

Keep venting here. We’re listening. 

[Thistle_do_nicely]

2 hours ago, Inanimate Carbon Rod said:

I feel daft in comparison to what TDN is writing with my own issue but im broken and feel like this is the best way to say what i feel. TDN im so sorry for your loss. 
My dad is my hero, all through my life hes been the strongest person, disabled since I was 4/5, lived every day of his life in pain, but so strong, so resilient and genuinely the best person I know, never says a bad word about anyone, never hurt anyone, so straight laced he wouldnt even take a hooky amazon fire stick, doesnt drink, doesnt smoke but found out he has incurable liver cancer. Its broken me, my family, im in so much pain emotionally at the thought of losing my best friend. Im sorry for being selfish and saying ‘me, i’m’ etc just trying vent. We had hope that he could be given ‘TACE’ and hopefully prolong his life by a couple of years, but despite being told he could see a specialist next week, we’ve been told we cant even see one until the end of November at least, even then its a ‘telephone consultation’. Im terrified that it will be too late, my dad seems so dejected by the news its just ripped us all in two. Feel like its knocked the fight out of him, he just seems like all the positive fight has gone. Im trying to find a private option but i dont know if he’ll go for that, the way cancer patients are just passed aside, god its awful. Why is it such a mess? Whats going on with this world?

Not at all, im extremely sorry to read that you and your family have to deal with a cancer diagnosis.

Every cancer is different, and i hope your dad will respond well to any treatment he can get no matter what stage its at.

Marie Curie are on hand, and i cant speak highly enough of them - if you/your dad feel up to it they're well worth a call. Possibly the Beatson too, i think they can chase up about treatment on his behalf with the CHI number.

Macmillan were good for emotional support with me too, only the one call i made in the end but i vented for half an hour over the phone to them and felt slightly better after it. Not much better, just to manage expectations, but slightly is better than nothing. It might help.

[Inanimate Carbon Rod]

2 hours ago, Hard Graft said:

ICR - thoughts very much with you. Cancer treatment at the moment is appalling as is much of the NHS. Try and stay strong for your old man.

Thanks mate, im trying, i just dont get why its been allowed to get so bad. 

31 minutes ago, TxRover said:

This is where everything he showed you will come into use. Reread what you said, strong, resilient, never a bad word, etc…and remember he showed you how to be all that. It’s a terrible bit of news, and the delay in any assistance is abominable, but you now can show him how well he raised you as you can help him see past the blinders of this sudden news and look for the chances to maximize whatever time you have now.

Here’s an idea that a coworker used when their parent was facing a similar crisis. She visited him daily, taking her camera, and recorded him talking about his life, the people he knew and the things he did. In the end it provided a great comfort to both the whole family she shared it with, and to him by reminding him of all the great things that had occurred and all the people he had influenced and helped. It won’t be easy for you no matter what you do, but you can make it better for him, as a partial payment for all he’s meant to you!

I wish there was a better answer to your questions, but unfortunately there isn’t. Keep fighting to get him the help he so richly deserves, and meanwhile keep learning from his resilience and showing him yours. Stay strong, not just for you, but also for him and the family.

Thank you so much for that, yes youre right about making memories etc, im planning when i come to terms with it all to make some videos for my wee boy when he’s growing up, my son is 4 and my dad is his wee buddy, the thought of telling him hes gone is destroying me, im determined that ill never let my boy forget my dad so if I can make wee videos to help him remember my dad, help him be part of key events in his life like big birthdays or life events etc id really like that. 

14 minutes ago, alta-pete said:

@Inanimate Carbon Rod a horrible situation. There’s never the right time, the right way or the right place to have to deal with what you’re all now facing. 

You know yourself the strength and integrity your dad has. And I think that has also been instilled in you. Talk to him, tell him that, he’ll tell you everything you need to know.

Keep venting here. We’re listening. 

Appreciate that AP thank you, trying to hold it all together and stay strong for him, im fortunate that my work have been incredibly understanding and my mrs has been a complete legend with the support etc. I just cant shake the thought of losing him. 

[Inanimate Carbon Rod]

3 minutes ago, Thistle_do_nicely said:

Not at all, im extremely sorry to read that you and your family have to deal with a cancer diagnosis.

Every cancer is different, and i hope your dad will respond well to any treatment he can get no matter what stage its at.

Marie Curie are on hand, and i cant speak highly enough of them - if you/your dad feel up to it they're well worth a call. Possibly the Beatson too, i think they can chase up about treatment on his behalf with the CHI number.

Macmillan were good for emotional support with me too, only the one call i made in the end but i vented for half an hour over the phone to them and felt slightly better after it. Not much better, just to manage expectations, but slightly is better than nothing. It might help.

It is a great relief to us that we live near the beatson and its one of the best centres for cancer treatment in the world. If we can get him Tase somewhere then we might get a wee bit more time, its just so difficult with the way things are. Thanks for that re the marie curie, it might be quite good to speak to someone, my mrs and mum both work in healthcare and i just think theres some things id prefer to not ask them and talk about. I really hope you are keeping as ok as you can be, maybe one day you and i can take part in a fundraiser for marie curie or something when we feel up to it. 

[Honest Saints Fan]

Sorry to read about your dad ICR. So frustrating there is a delay seeing the specialist. Cancer is just absolutely devastating. 

 

I have my 4 monthly clinic in 2 weeks. Over 4 years diagnosed with incurable cancer. Hopefully that can give anyone reading a little bit of positivity. 

[Inanimate Carbon Rod]

13 minutes ago, Honest Saints Fan said:

Sorry to read about your dad ICR. So frustrating there is a delay seeing the specialist. Cancer is just absolutely devastating. 

 

I have my 4 monthly clinic in 2 weeks. Over 4 years diagnosed with incurable cancer. Hopefully that can give anyone reading a little bit of positivity. 

Thank you HSF, my dad has done a bit of reading and its people like you going on who have given him hope. We have been told if he could get TASE then the sort of expectation is most people can go on for a couple of years, some go on for in excess of 5 with the type of cancer he has, id just be delighted to have any time i can get with him, I just dont want him to suffer. Just hoping for a break where he will still be able to get this TASE procedure, but I feel like its pretty much like hoping for a miracle. 

 

[scottsdad]

4 hours ago, Inanimate Carbon Rod said:

I feel daft in comparison to what TDN is writing with my own issue but im broken and feel like this is the best way to say what i feel. TDN im so sorry for your loss. 
My dad is my hero, all through my life hes been the strongest person, disabled since I was 4/5, lived every day of his life in pain, but so strong, so resilient and genuinely the best person I know, never says a bad word about anyone, never hurt anyone, so straight laced he wouldnt even take a hooky amazon fire stick, doesnt drink, doesnt smoke but found out he has incurable liver cancer. Its broken me, my family, im in so much pain emotionally at the thought of losing my best friend. Im sorry for being selfish and saying ‘me, i’m’ etc just trying vent. We had hope that he could be given ‘TACE’ and hopefully prolong his life by a couple of years, but despite being told he could see a specialist next week, we’ve been told we cant even see one until the end of November at least, even then its a ‘telephone consultation’. Im terrified that it will be too late, my dad seems so dejected by the news its just ripped us all in two. Feel like its knocked the fight out of him, he just seems like all the positive fight has gone. Im trying to find a private option but i dont know if he’ll go for that, the way cancer patients are just passed aside, god its awful. Why is it such a mess? Whats going on with this world?

You have my complete sympathy. My dad had a terminal diagnosis a few months back, and it really knocks it out of you. 

But he isn't gone yet - make sure your time with him is quality time. 

[Inanimate Carbon Rod]

6 minutes ago, scottsdad said:

You have my complete sympathy. My dad had a terminal diagnosis a few months back, and it really knocks it out of you. 

But he isn't gone yet - make sure your time with him is quality time. 

Yep absolutely, would love to have the Bankies win some silverwear for him this season, because he didnt keep well going to games was a massive part of how we spent quality time together etc, so definitely planning on getting to as many as treatment allows. Im devastated for my mum, they are each others entire world, shes a few years off retirement and they had all these wee plans, like just pottering about things, but they live for each other and now shes just completely lost. I get its the same for everyone who gets this diagnosis but its just turned everything upside down.  Just got to hope for as much pain free time as possible, my dad is a fighter, hes the strongest guy ive ever met, i hope yours is too, i hope you get to make memories too.