[eveParticipant]

Hi Sue

How are you,??? Just to let you know,we are thinking about you,do not worry if you cannot reply,everyone understands.Love Eve

[GillParticipant]

Has anybody heard from Sue? I have been thinking of her and wondered how Michael is Gill xx

[DaiCroParticipant]

Hi Gill,

Sue;s last reply was on the 4th January… 8 days ago. 😐

I hope she is coping… I am sure she would let us know if there were any developments. Perhaps the DN's have arranged a few days hospice respite and she has managed to get away for a few days – wishful thinking but that would be good. 🙂

Much love 🙂

Dai.

[susannahParticipant]

Hi All Sorry havent replied, what a week!Saw the GP Friday (needed a sick note for work been off with stress since Michaels prognosis) He refused saying i was now a carer and this could be long term? I looked at him and then he asked what the oncologist had said? I wanted to say he doesnt see one but I was to upset, although im 60 I have supported us both for the last 5 years and cannot just give up my job. (this sounds terrible when I read it back)I just started to cry and he signed me a note for a month and said good bye. I sat in the car park and thought of all the things I could have said but my head was all over the place.
Had a bad Saturday and Sunday Michael still in pain. Monday called the macmillan nurse she couldnt come out until Friday.Tuesday had an interview at work with OH and HR they were very good understood why I was off work, they gave me quite a few options.one being a career break from a month onwards (no pay, but at least I wouldnt have to make any sudden decisions about work)

Wednesday had to call my friendly GP out (not) could not control michaels pain at all, rang the surgery asked if I could take him down! The GP came out later that afternoon he asked him a few questions then upt his MST and said I needed to contact him in a week if no better.

Friday the macmillan nurse came out, what can I say she was lovely, she answered most of my questions sorted out Michaels pain, (could not believe how we had been left) She has arranged for us both to visit the hospice next week for some alternative therapy/relaxation and to look round, She also said Michael could get high rate DLA care as he is terminally ill she would sort that out too . She will ring Monday to see how we are but she will come out again nex t Friday.

Sorry the post is a bit long winded . I know the prognosis hasnt changed but I do feel better for the support

Love to all

Suex

[GillParticipant]

Hi Sue I am so pleased that you are both getting some help at last your Mac nurse sounds wonderful.

It is good that you may be able to take a break from work. With Michaels DLA allowance and you not working for a while it may give you a chance to see if you could manage on semi retirement money and Michael's benefits.

I retired at 59 instead of 60 when Stephen became worse I lost out a little financialy but I understand that may not be an option for you.

Is Michael awake more now and able to chat now his pain is under control?

Do visit the hospice. I know that people die there (my darling Stephen did) but they don't just cater for the absolute end. Respite, advice, lots of different therapies. I expected it to be a place of gloom. Far from it. Bright and airy with a feeling of hope. They cater for patients and family members alike.

If you don't feel like posting we all understand but please remember that you and Michael are in all of our thoughts

Much love from Gill xx

[TinaParticipant]

Hi Sue,

As Gill says it's great that you are getting some help the Mac nurses are just the best.
I am sure you will find you are not as stressed now that you do not have to worry about work. I gave up work to look after Patrick when given his prognosis and I am so grateful for those three months with him.
Sue it makes me so angry that Michael is still having to see the GP, I am completely mistified as to why his consultant & Haem team are not looking after him directly.
Michael can most definately entitled to the higher rate of DLA and you are also entitled to carers allowance if you are not working.
I hope you will both find some therapies helpful at the hospice and allow yourself to relax a little.

Wishing you strength and love

Tina XX

[mhnevillParticipant]

Dear Sue

What a bad time you have had. Like others I can't understand why you haven't had the help you needed before now. Releived that some help is now coming. If Michael doesn't go into the Hospice the Social Services should get a Care Plan in place for you even if you have to pay for some of it. That's why you should be getting DLA. Glad the MacMillan Nurse is at last on board to help.

Lots of love to you both.

Mavis x

[susannahParticipant]

Dear All Michael is asleep at the moment so I thought I would give you an update. The last couple of weeks have been mixed, I havent managed to visit the hospice yet as we have been snowed in, but hopefully now the weather has changed i might get the chance.
As you all have said th mac nurse and the district nurse have been brilliant I cant thank them enough. The district nurse is coming in 3 times a week as Michael has developed sores on his feet, this is because he is in bed most of the time as his legs are very weak, and he is on a very high dose of morphine so hes asleep quite alot of the time.
We are having a stair lift fitted on Thursday to see if we can get him downstairs for a short time each day.Luckily he has avoided any infections.
The GP has had a talk with me about differnt drugs and a DNR form which I have had to fill in.

I still feel as though no one will talk to me about the prognosis we were given and the way all treatment was stopped, who knows I will probably never be given a straight answer. But I now realise the important thing is Michael so im doing all I can to make things good for him, im worn out mentally and physically but I know my time will come.

Much love to you all

Suex

[tomParticipant]

Hi Sue and Michael

Am sory the snow didn't allow you to get to the Hospice and I hope you get soon now the weather has got better.
Am pleased you found help with the District Nurse and Mac Nurse,I hope the stair lift Lifts Michael's spirits as am sure it would be great to get into another room.

Its a Bloomin Shame you are left at the moment whit "What and Why's" it shouldn't happen at al.

Please Sue dont forget to take a little bit of time out for yourself even if it means nipping out to window shop.

Love and Hugs to you Both

Tom xx

[mhnevillParticipant]

Hi Sue

I am glad to hear you are, at last, getting some support with Michael's care and like Tom, hope you get to visit the Hospice soon. However, now you have got more suppport at home, and you are having a stair lift put in, you may feel happier with Michael remaining at home.

Sorry you still haven't got the answers you need to put your mind at rest. I think it is important that you write down what exactly you want to know, so that you can get the answers eventually.

However, you probably wouln't want to be putting Michael throught the trauma of any more treatment, with all the hospital visits etc. involved, if it won't give him any better quality of life.

You both remain in my thoughts and prayers.

Mavis xxxxxxxxxx

[TinaParticipant]

Dear Sue,

I am so glad you now have support from the district and Macmillan nurses. Although I feel you should demand an explanation for Michael's treatment (which you are surely owed) I feel you are doing the right thing focusing your attentions on Michael. You will benefit from this in more ways than you know.

Love Tina X

[DaiCroParticipant]

Hi Susannah,

How are things generally? Are you getting enough support… the right kind of support and how is Michael coping without treatment?

Have you managed to visit the hospice yet?

Keep in touch when you can. 🙂

Dai.

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