brain mets.

User

Posted 29 Oct 2015 at 13:37

Val, I don't post here very often, but I was moved to write today to offer a virtual cuddle to you and your hubby. No words at the moment can make this situation better for you, but do feel our love and support.

User

Posted 29 Oct 2015 at 20:23

Again thank you all for your thoughts and prayers. At last today Mike had the much awaited MRI (head shot only). MDT meeting and outcome will now be Monday. Visited by very nice lead oncology nurse who said it was a blessing in disguise that this last scan was delayed as when she saw Mike on Tuesday she would have had to report he was too poorly for any further treatment, but today the dexamethasone seemed to be doing its work - much less confused, able to understand what was being said. She feels the line of treatment will be radio therapy to skull - anything from one to a maximum of five shots. Maybe Zoladex cancelled and a different drug in its place. If it works, then hopefully 1-2yrs if not - months. He took this quite calmly. There is a slight improvement, but for how long? Can stand, but not walk yet. Val

User

Posted 04 Jan 2016 at 20:11

Hello - it has been many weeks since I last posted. It has been a real rocky road - after two aborted attempts at neuro surgery (too unwell) it was given up, surgeon thought we had got to the stage where he would not make it. Mike gave up on solid food and still will not eat. Fluids by this time was only taken in sips. Just before Christmas he was transferred to the hospice - he looked dreadful. Today they have started physio, he has not been out of bed since end of October - his diet is terrible - now taking fluids but at least drinks 2 or 3 cups of liquidised soups daily. Home maybe for a while in the not too distant future - but I will need a lot of support as there is only me - no extended family. Any ideas at what I can hope for? all will be gratefully accepted. (We are both in our 70's). Val

User

Posted 04 Jan 2016 at 21:48

Hello Val.

I am so sorry that surgery was cancelled due to your husband's health.

I am sure that there will be somebody who has travelled your road who will be along at some stage with their offers of advice.

I really don't know what else to add except to say I really feel for you both and I hope that his stay in the hospice will give you a respite and that they are be to make him as comfortable as possible.

Thinking of you

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 05 Jan 2016 at 01:23

Hi Val,

I cannot offer any first hand knowledge, but I have always hoped that when my time comes, there will be lots of practical support from the NHS nurses and MacMillian nurses etc.

Make sure that all the professionals know that you are on your own and need all the support you can get.

Your role is to give your man the love which keeps him going, you should be able to leave the practical stuff to others, so keep posting, and if the professionals let you down let us know where you are and what we can do to help.

Dave

User

Posted 05 Jan 2016 at 01:31

hi val

sorry to read how things have gone, getting mike home sounds a nice idea but is it very practiable will you be able to cope on your own, its something I feel you need to discuss with the hospice, sorry I cant offer any other advice

regards

nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 05 Jan 2016 at 10:18

Val
I am so sorry things have gone this way my heart aches for you.

The physio team will do their best to get Mike able to transfer from his bed to a chair, and then hopefully walking a little. It will be really hard for him if he has been in bed for almost 2 months. So don't be surprised if he looks exhausted after any efforts. The physio team will take things very slowly at first and it might take a little while.

The hospice team should be able to give you all the advice and help you need if they think it will be possible to get Mike home. They will look to see if there is anything that needs to be done at home, like providing a specialist hospital bed and air mattress and possibly using a room on the ground floor if you live in a house not a bungalow. They should cover every need including getting you some at home care help.

Has Mike indicated where he wants to be? sometimes patients say that they feel more comfortable in the hospice where everything can be right on call when it is needed. Other patients would move heaven and earth to be at home.

See if you can have a chat with the pastoral team at the hospice (the Physio, the Occupational therapist and the social worker) they should be able to answer any questions you might have.

I am thinking of you
xx
Mo

User

Posted 22 Jan 2016 at 20:43

Hello - Mike did not make it home, developed yet another UTI and this time it went haywire. The last couple of weeks have been hell for us both but eventually the hospice got the right drug combo. Mike became calm and more settled. He also developed a chest infection (never had one in his life) and today he died very peacefully, infact he looked like the Mike of old. His road was very rocky but he is now at peace. Val

User

Posted 22 Jan 2016 at 20:59

So sorry to read of your loss, my condolences to you and wish you strength for the future.
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 22 Jan 2016 at 21:06

Val

I am so very sorry for your loss, hope you are looking after yourself
xx
Mo

User

Posted 22 Jan 2016 at 21:26

Oh Val, I am so sorry to read this. I know you hoped that he would come home but I guess in the end, the most important thing to Mike was to feel safe and loved with as little distress or discomfort as possible. You have been so strong and all I can wish for you is that you can find just a little more to get you through the coming days, weeks and months.

Sleep peacefully, Mike

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jan 2016 at 21:32

Val,

I am so sorry to hear this. Even when expected, the loss is devastating. What a difficult time you have had the last few weeks, no words can make up for it but just know that there is much love and care sent to you from this community.

Fiona.xx

User

Posted 22 Jan 2016 at 22:27

hi val
a big virtual hug from me, sorry to hear the sad news

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 22 Jan 2016 at 22:33

My heart sank whilst I read this Val. So sorry. I hope you can find strength
Chris

User

Posted 22 Jan 2016 at 23:10

Val

So sorry to hear of your loss, you are in my thoughts.

Thanks Chris

User

Posted 22 Jan 2016 at 23:24

Val,

I'm so sorry to hear about Mike's passing. I wish there was some way of taking the pain away at this sad time. Remember, we are all here for you when you need support.

Steve x

User

Posted 23 Jan 2016 at 09:10

I'm thinking of you and your family and friends Val.

I'm so glad that at the last you got your "old" Mike back and that's one of the better memories to hang on to.

The knowledge that, at last, he was able to find some measure of calmness and relief I hope will give you some comfort.

As others have said, you've had to be strong for such a long time and you'll need to be strong for just a little longer although I hope your pain has eased knowing that Mike is at last at peace.

Best Wishes and virtual hugs along with the virtual support

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 23 Jan 2016 at 10:50

So sorry to read this Val, my thoughts and condolences are with you.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jan 2016 at 11:28

So sorry to read this Val,

My sincere condolences go to you and your family

Luther

User

Posted 23 Jan 2016 at 15:43

My condolences too Val. I know you were expecting this but it does not make the passing of a loved one any easier. You had many good years and memories to treasure, even though sadly overshadowed by recent unhappy ones.

Barry

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