Terminal cancer support please

[Nystagmite]

I am not sure whether this is best place in here or special needs and disability. I also don't want to clog up the what made you swear today? thread in the Bear Garden.

 

For those of you who have seen that thread within the last few days, you'd know that my Granddad has been given 2 years to live and has cancer in his spine and liver. He had mouth and throat cancer 3 years ago and was given the all clear 9 months later.

 

Any support, advice, etc. would be appreciated please. I will also be using this thread to post what's going on with his treatment, etc.

[citizenB]

Very sorry to hear this indeed, Nystagmite. I have lost 2 very close friends and a family member to this horrid disease. Has your Grand - dad been put in touch with a MacMillan Nurse ?

 

I can see no reason why your thread cant stay here - although Special needs would be equally good.

[Nystagmite]

Thanks I don't know if they've spoken to Macmillan yet. I have been signposted there by friends who have received support from them.

[hallowitch]

My DIL was diagnosed with terminal cancer Christmas last year and the MacMillan Nurses were/are wonderful they arranged for a welfare benefits advisor from the council to come to her home to help her claim benefits (benefits were fast tracked and paid within weeks of her claim going in) they are very supportive I personally have been on the phone to them on several occasions when I couldn't understand her treatment or if I had a worry about the side effects of the treatment

[Desperate Daniella]

Macmillan are wonderful and there are the Marie Curie nurses who are great too.

 

There may be a local organization too so it's worth googling. There is a terrific one near me which offers advice, massage, and other support.

[Nystagmite]

Thank you. I had a quick look last night and there is Mustard Tree (which I believe is to do with Macmillan) who are based in our local hospital.

 

Hallowitch - sorry to hear about DIL.

[Nystagmite]

Just been told that Granddad's SIL has terminal cancer too. She has 6 months to live and doesn't want treatment.

[Feebee_71]

Nystagmite,

 

Sorry to hear about your family members and their diagnoses, it is one of those occasions where it doesn't rain but it pours. My heart goes out to you.

 

I can understand your granddad's sister in law's decision as sometimes the treatment regime can be horrific with only a marginal benefit.

 

I hope that, as an extended family, you are able to access local support groups as well as services offered by McMillan and Marie Curie I would also recommend contacting the local hospice as they can guide you towards local services/charities who might be able to offer practical assistance as well as emotional support.

 

Feebee_71

[Nystagmite]

Thanks. I think I see where she's coming from too. I know when Granddad had his treatment, he had a lot of problems.

 

In slightly happier news, Granddad is, for the most part, able to eat more foods now that his teeth have been sorted. He had some problems due to the treatment he had before and had some issues from the scarring in his throat. (he had mouth and throat cancer)

[Marianne7]

There is a very good forum run by Cancer Research for patients, families and friends and anyone affected or concerned about cancer. Very useful for advice, both practical and emotional, for reassurance or just simply "sounding off". A bit like CAG forum, but specifically regarding cancer. It has special sections for different cancers. Do have a look. (Sorry, can't find link, but just enter Cancer Reseach forum ~ I'm sure you'll find it.)

[bhall]

I am not sure whether this is best place in here or special needs and disability. I also don't want to clog up the what made you swear today? thread in the Bear Garden.

 

For those of you who have seen that thread within the last few days, you'd know that my Granddad has been given 2 years to live and has cancer in his spine and liver. He had mouth and throat cancer 3 years ago and was given the all clear 9 months later.

 

Any support, advice, etc. would be appreciated please. I will also be using this thread to post what's going on with his treatment, etc.

 

I am very sorry to hear about your Granddad.

 

The only advice I can give is to look at two areas (apologies if the following is a little to frank and straight to the point)

 

1. To do anything you can to help your Granddad's last two years to be as comfortable for him as possible. Do as much research as you, especially in relation to the effects on your Grandad as the cancer progresses. An example would be the liver, it can start to release toxins which can have an adverse effect on him. It will help you and your family to be as prepared as you can be for the times ahead.

 

2. Start to give some thought to after he is gone (sorry I know this isn't nice).

 

You have to think about, his pensions (can he take a lump sum now), debts, does he own his home, if your Nan is alive how will she survive financially etc. You could get in touch with the Money Advice Service https://www.moneyadviceservice.org.uk/en

 

One thing I would say, is remember whatever happens you are never alone

[Nystagmite]

Thank you. Trying not to think about the stuff you mentioned; but I know it's got to be done.

 

Last time, he wanted us to act normal and I think he wants that again. That's going to be so hard. He asked that we don't ask how he is. I remember he phoned up asking for one of my parents who were busy and would only be a few minutes. That was so hard not asking him how he was.

[Desperate Daniella]

I'm so sorry to hear about Granddad's SIL too. Is there a good local hospice you can speak to?

[bhall]

Thank you. Trying not to think about the stuff you mentioned; but I know it's got to be done.

 

Last time, he wanted us to act normal and I think he wants that again. That's going to be so hard. He asked that we don't ask how he is. I remember he phoned up asking for one of my parents who were busy and would only be a few minutes. That was so hard not asking him how he was.

 

I am sorry for what was said in my post, I have been through what you are going through. I know how hard it can be.

 

I wish they could just find a cure once and for all...

[Nystagmite]

No need to apologise. What you've said is true.

 

I am sorry to hear that.

[Sali]

Yes, I would say contact the local hospice and ask for respite care options. They will also be able to help him with pain management as the illness progresses (This is an area too often neglected by the Trusts).

 

Are social services involved? If your grandad remains at home, then things like hand-grips, bath lifts etc can be installed sooner rather than later. Of course, benefits - carer's allowance etc - should also be investigated. You'll probably have to fill out lots of forms for this, but ultimately it is worth it. Also, long-term, look at the provision of NHS continuing care, where your grandad can get 24-hour care in his own home if necessary at no cost to the family. I know when a loved one is ill there is an massive impact of the whole family. And lastly, your grandad, if he hasn't already, should make a Will as it would speed up probate.

 

My best wishes to you and your grandad.

[Nystagmite]

Blimey! So many things to think about. hanks guys. Will pass this on.

[assisted blonde]

I have terminal cancer diagnosed 3 yrs ago, was given 18 months but after 9 went back to full time work, just been diagnosed with brain mets but got to say treat your granddad as normal, if it hurts he will tell you, if it dosent he will carry on as normal. a terminal illness only means you will die with it not necessarily of it. seriously I have had a lovely life and I intend enjoying whats left and the same goes for your granddad no point in being miserable.. xx

[Desperate Daniella]

I have terminal cancer diagnosed 3 yrs ago, was given 18 months but after 9 went back to full time work, just been diagnosed with brain mets but got to say treat your granddad as normal, if it hurts he will tell you, if it dosent he will carry on as normal. a terminal illness only means you will die with it not necessarily of it. seriously I have had a lovely life and I intend enjoying whats left and the same goes for your granddad no point in being miserable.. xx

 

What an inspiring post. May you continue to have a lovely life for as long as possible.

 

Many years ago I worked with a woman whose husband had been given 3-6 months and he was still alive 12 years later, and may still be. It's a horrible disease but very unpredictable, and sometimes people literally amaze their doctors.

[Nystagmite]

That's amazing. I was talking to someone about this. They said their mum had been given something like 6 months to live. She lived for 3 years.

[assisted blonde]

there is no time limit its just statistic and we all know they can lie !!

[Guest]

Just Lost my mum to bowel Cancer this January 2013

 

 

She was diagnosed Jan 2012 and i still remember the phone conversation when she told me that she was "not very well" and had been diagnosed with a Bowel cancer. They assured her that they could treat her and there was a high chance of recovery , so she started with chemotherapy and then radiotherapy

 

As she would be having lots of stays in hospital i made sure i bought her a Kindle , portable DVD player and saw her as much as possible (i lived and worked about 100 miles away from her) . Once the chemo started she started losing weight rapidly and had no appetite , so i chatted to a few nurse friends and got her some various high calorie/vitamin milkshake style drinks with a big mixer so she could add a chunk of ice cream to them (adds more calories) . Also each time i visited i would try and tempt her with cake !! as she always had a sweet tooth !

 

I suppose the main thing was , that i prepared myself for the worst and tried to make her time left with us as comfortable as possible.

 

As it got the around August 2012 she was told that the cancer had spread and there was nothing more they could do . Apart from painkillers and support from a macmillan nurse. I carried on with my visits and as she was of the "i dont like taking pills" group of people had to try and convince her to take her painkillers and other medications she was on

 

As we approached November she was in immense pain and very very thin ....but still quite mobile and independent , i finally convinced her to ask to go into a hospice for a rest and so they could sort out the correct doses for pain relief . took about a week for them to find her a place .

 

They made her comfortable and the care she recieved was brilliant. But as Decemeber went on , i could see that she would not be coming home again. So managed to arrange as many relatives to come down for a mini xmas party in her room on xmas eve- have some great photos of that day and she was in no pain , and looked well . Even managed to eat some macaroons !

 

But within the week she was in a semi comatose state , and then lapsed into a deep sleep and finally left us in the beginning of Jan

 

i suppose the main thing that helped me was doing everything i could to make her as comfortable as possible during the last few months , made sure i got lots of photos of the two of us together . And making sure she got into that hospice as they made her last 6 weeks with us bearable and knowing she was recieving adequate pain relief and excellent care

[caro]

Sorry for your loss rupert.

 

Make happy memories while your grandad is well enough to enjoy them.

 

See if there are things he'd like to do or see but never got round to. I'm sure it would be all the more special for him if he can share good times with you.

 

The bad times are inevitable so make the most of him while you can.

[Nystagmite]

Sorry to hear that Rupert.

[Nystagmite]

He starts chemo and radiotherapy tomorrow.