Terminal cancer support please

[honeybee13]

Hello again.

 

Just to say again that there are 'hospice at home' organisations. This is an example in Hertfordshire, I hope there might be one near you, Nystagmite.

 

http://www.renniegrove.org/

 

HB

[Nystagmite]

Thanks HB.

 

Clear - that's awful. Mum is a carer for a man with a terminal illness. She does everything for him, although she sometimes needs his wife to help move him, etc.

[Annie71]

Sorry to argue atsuch a sensitive time.

Clear33 I do hope that you could justify your comments about a hospuce killing off patients because the heating broke.

I can only talk about LOROS in Leicester.

I will also praise the quality of the local disrict nurses who came in to provide the morphine and ketamine.

 

Nystagmite the only thing I would sayis remember pain can be controlled but too often gps are either too inexperienced at end of life pain control or too scared of being investigated that they will not provide the necessary drugs. Palliative care teams from the hospitals are much more likely to help.

I wish you all the best at this difficult time. Also remember that when people are scared or in pain they hit out at the nearest and dearest and do not mean what they say

[bhall]

To carry on from Honeybee's post, I am not sure if this applies to all organisations but using one that I have experience with - Elenor's Hospice sent someone every couple of weeks just to look in on a relative.

 

My family and my relative who had cancer really appreciated the visit, she would answer questions and talk and listen to my relative about problems he was having with his medical care etc.

 

What I am trying to say is in the times ahead your family might need all the help and support it can get. It might be worth a try in the first instance speaking with any hospice's in your local area and see what services they provide. Then if you feel it is appropriate discuss it with your Grandad.

 

 

Fortunately, I have only had to go through a similar situation just the once, but hospice's go through it everyday. They do know what they are doing and can help.

[Clear33]

Annie71,

 

it shouldnt be down to patients to 'justify' themselves when speaking the truth about medical malpractice and idiotic treatment.

 

However, if you are asking me why I mentioned this, i can explain. The title asks for support.

 

The patient has made it clear he wants to remain at home. I was supporting that.

 

There has been undue bullying, in my experience, to get patients into hospices. One of the psychological techniques they use to do this is to make you feel inferior whilst simultaneously puffing themselves up as medical experts who know whats best. They have consistently proved to me just how incapable they are.

 

Another way was to just repetitively keep asking my mum. I had to tell them, on her request to stop pestering her, she had made her choice to stay at home and to leave her alone.

 

I dont want to talk about the hundreds of incidents which amounted to a catalogue of errors, only mentioning something which I felt coild be supportive of OP and Grandad.

 

There are some good ones. And they struggle against a system which fails lots of patienrs too.

 

 

All The Best

Clear33

[Clear33]

Thanks HB.

 

Clear - that's awful. Mum is a carer for a man with a terminal illness. She does everything for him, although she sometimes needs his wife to help move him, etc.

 

Nystagmite,

 

Good to hear your Mums story and her patient getting great care - thank you.

 

blessings

clear33

[mr_mastiff]

Nystagmite, I have been following this tread from the start, I have not said anything perhaps because the subject brings back memories that are too recent and painful. I am very pleased that your Grandad is being given the chance to make is own decisions, it allows him the dignity to control the time he as left. There are many issues with the choice your grandad has made and the only advice I would give is never shut the door on any treatment options. What is the right choice now, may in a years time need to change. Also from experience other members of your family (yourself included) may need help emotionally in dealing with your grandads condition and prognosis. So please look after yourself and other members of the family in this difficult time.

 

My thoughts are with you.

[Nystagmite]

Still waiting for a date for my MRI. Spoke to GP receptionist who said she'll get someone to call me. They're now chasing up this referral.

 

I am now getting headaches once or twice a week. A huge improvement from a few months ago, where they were daily.

[Nystagmite]

Still waiting for a letter regarding MRI scan. Getting really ****ed off now.

[Nystagmite]

Changed medication due to unwanted side effects of hunger and weight gain.

 

Have discovered something quite interesting about the medication (Gabapentin) I'm on - it's currently being used in trials as a treatment for one of the eye conditions I have.

[Nystagmite]

MRI scan results came back as unchanged. No idea what happens now. No-one can explain the sudden change.

 

It also appears that no-one apart from me is overly concerned about the constant pain or the sudden change in head pressure.

 

[think about it]

MRI scan results came back as unchanged. No idea what happens now. No-one can explain the sudden change.

 

It also appears that no-one apart from me is overly concerned about the constant pain or the sudden change in head pressure.

 

 

It might be worth sitting down with your GP (ask for a double appt) to review everything so far and ask them what their next steps are?

[Nystagmite]

Thanks. Have been told by some medical students that I'm overreacting. One then said "what do you want? A cure?" Well, yes, I would love a cure. I don't want to spend my life on medication, nor do I want to spend it in pain.

[Nystagmite]

After a few months of him doing well - that is, he's putting on weight and looking as well as can be expected, he's ill again. He has a chest infection (He has lung cancer too) and mentally he's not with it.

[Nystagmite]

He died early this morning. RIP Granddad. At least he's not suffering anymore.

[caro]

Sorry for your loss.

[honeybee13]

I'm sorry to hear that, Nystagmite.

 

Your granddad will be in a better place now.

 

Hugs, HB

[Mike_hawk]

Nystagmite, all I can do is echo others thoughts. He is in a far better place now and you should try to remember him as he was. No more pain or anguish, just a long rest with no more worries.

 

Its a terrible disease and equally terrible to watch loved ones minds wander day by day as their time for rest nears.

 

Hope you can focus on the good times and try to remember him as he would doubtless want you to.

[**Margaret**]

:Nystagmite:

Sorry to hear your sad news.

Margaret.

[Nystagmite]

Thank you everyone.

[bhall]

He died early this morning. RIP Granddad. At least he's not suffering anymore.

 

Sorry I have only just read this. I am so sorry Nystagmite for your loss

[Clear33]

I have just received this too.

 

Sorry never seems like

[Clear33]

I have just received this too.

 

Sorry never seems like the right word to me, but i have never found a better one either. Life is a funny old precious predicament.

 

 

Prayers

[mr_mastiff]

Due to illness I have not been able to visit the forum for some time. I can only echo the kind comments made by others and hope you will treasure the memories you have of your grandad.

[Nystagmite]

Thank you. His funeral was Monday. It was a lovely simple service. It was nice to see his side of the family too. It would have been nice if we'd seen them on a happier occasion.

 

His sister in law also has terminal cancer. She looks so frail now.