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Plan F. As you were

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User

Posted 02 May 2017 at 23:16

I am so sorry to see this, E - it certainly seems that you are coming to the very difficult time of trying to balance enough meds to maintain a reasonable quality of life with not so much that OH is knocked out all the time. And difficult decisions like do you want a trail of people coming now while he can still enjoy their company a little bit, or put them all off and suddenly find it is too late for jovial visits. Such a horrible time for you; you have been amazing and will just (just ... such a ridiculous little word) need to draw on that strength a bit more to keep your man safe and comfortable for as long as possible. Thankfully, it seems you are getting a fantastic service from the agencies but don't forget to take care of yourself in all this; someone has to care for the carer.

I am thinking about you xxx

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

User

Posted 03 May 2017 at 05:18

Thinking of you both Eleanor
All though it is awful times you seem to have the pain mostly under control which is a blessing I suppose. You are so strong and capable and I admire your love. Best wishes
Chris

If life gives you lemons , then make lemonade

User

Posted 03 May 2017 at 06:35

Eleanor,

We're sorry that OH's troubles continue but are gratified to hear of the superb support you are receiving from all the medics involved.

All our love to you.

David and Linda

User

Posted 03 May 2017 at 07:33

I admire your strength and wish the best to you both, Eleanor.

Lola

User

Posted 03 May 2017 at 08:17

Thinking of you, Eleanor. Glad to hear you're getting such fantastic support in the NHS, but it must be a burden keeping it from other people, and the worry of how and when to tell them will be looming over you. I'm not best placed to advise on this, as we simply told everyone right from the start, but there comes a time when the family have a right to know, and to prepare themselves for what lies ahead.

It is horrible having to tell people, but I think once you have tackled this and they have got over the immediate shock, you and OH will both find new sources of support. You will surely be relieved not to have to fib and pretend, and will be able to talk honestly about your feelings, your worries, and your plans. You owe this to yourselves as well as to the family.

User

Posted 03 May 2017 at 11:42

Thanks Marje...wise words as ever.

After the chaos of yesterday when I was dashing around in the rush hour trying to get the various prescriptions from various pharmacies and the check-list from the doctor and phone the district nurses and respond cheerfully to anxious calls from his daughters, while he was at home being ill and feeling ill, I decided that enough was enough! I also realised that I hadn't washed properly for three days and looked like a plumper version of the Lady in the Van (only not so well turned out).

So I asked him about it this morning on the way back from the hospital. He wasn't keen but he understands that I need the support - and that the kids deserve the truth. I suspect/hope he will find it a relief too. So all we need to do now is to work out how and when.

I think about you very often and wonder how you are managing. Still such early days and I can't imagine how one ever adjusts. Sending my love. Thanks for your kindness.

Eleanor

User

Posted 03 May 2017 at 12:15

I can't think of anything to say that hasn't already been said, or that will not come out as banal or flippant, which I certainly wouldn't want.

Just know that I admire your courage and strength and hope that once your family and friends are told they will be an amazing support for you.

I'm thinking of you

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

User

Posted 03 May 2017 at 22:15

I have been open about my diagnosis since the start and only my elderly mum (she's 93) we have not told. Be prepared for people's reactions to vary, some cannot cope and somewhat ironically, you find yourself trying to help them. But most people are simply amazing. The warmth and helpfulness that friends and family will give will sustain both of you through these unwanted times. But you will both feel less alone and it also opens up time to create memories, to talk to each other before it is too late.

The thought will be much worse than the wave of support you will receive. Good luck on this next stage.

User

Posted 03 May 2017 at 22:26

Many thanks Yorkhull - I am anxious but that makes me feel a tiny bit less so. In fact, on second reading, it makes me feel a big bit less so! The plan is to see the onco tomorrow to get some understanding about where we are at and what's next so that we can be clear in what we tell them. We'll probably wait until Friday evening so that the massed grandchildren are all out of the way and so that they have a bit of time to deal with the news before they go back to work on Monday. They are already worried because it's clear that something is seriously wrong so the truth might be a relief in some ways.

Might have a stiff gin before we set off however!

PS any news on the PIP?

User

Posted 04 May 2017 at 12:24

No news on pip. Expecting a letter for an assessment but maybe they are awaiting references from the medics. I have results of scans etc next week so medics may have been waiting. One good thing is that if they end up offering pip to me then it's back dated to the point you first applied. Would like to know because the summer is here and I want to get out more, next summer you never know.

Good luck this weekend. There will be tears and lots if questions but it will end with loads of support which will be a boost.

User

Posted 04 May 2017 at 22:11

Oh E knickers in a twist and not washing I hate to admit it but yes I have also been there , more than once I have looked and smelt like a hamster. This cancer malarkey is so not glamourising is it.

I always wanted to appear totally in control and with a M&S smile and jacket and what actually happens is I am unwashed , hair not Brushed and looking more like the wild woman of Borneo .

Life never quite goes how you plan it .

So sorry to read things are not going well , keep hanging in there girl .

Telling family and friends is hard we have got the T shirt on that one , we told everyone early on but that has back fired because Trevor has survived the odds they know think he is invincible. Of course he isn't and the end game will come one day.

Thinking of you often.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 May 2017 at 22:20

Oh Julie, you have been and are such a source of strength to me. And such a source of unexpected laughter in the middle of the headclucking gloom of this effing disease.

Love from one unwashed hamster to another.

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