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Having a bad day.

(140 Posts)
merlotgran Sat 13-Apr-19 12:11:09

I'm not able to focus on anything today, even light hearted threads on gransnet (I'm avoiding any sad ones). Yesterday we were told that chemo is no longer an option for DD's gall bladder cancer and she is now under the palliative care team as her liver is failing. I'm beginning to doubt she will ever come out of hospital even though hospice at home is being discussed. The sight of her lovely clear skin and big brown eyes so jaundiced makes me weep.

I managed to hold it together yesterday (almost) but today I'm a wreck. I can't bear to go in the garden because this time of the year is all about hope and planning. I can't bear the view across the fens - too many memories of the children growing up. I can't be bothered to cook, I can't focus on reading or watching telly.

I don't have to visit today because others are going so at least I'm spared the drive. The pain is almost unbearable but has to be endured Poor DH just doesn't know what to do with himself. We thought we'd try planting main crop potatoes but CBA.

I know I must expect this awful helplessness. Others go through it, we're no different but God, it's hard.

dragonfly46 Tue 16-Apr-19 18:14:54

Oh Merlot how brave you are all being. I hope you have a memorable weekend which goes easier than you are expecting.
You are in our thoughts all the time flowers and hugs

Bellanonna Tue 16-Apr-19 18:14:12

Oh merlot. Big, big hug

merlotgran Tue 16-Apr-19 18:10:20

Just got back from the hospital. Taking each day as they come is all we can do. Yesterday was another despairing one as we were told her liver is not functioning well enough to have a stent fitted to widen the bile duct. They are going to try and insert another drain instead. Tomorrow they are hoping to do a gastroscopy which will enable a procedure to block a nerve in her back which is causing her pain. The jaundice is still evident and now she is starting to itch.

On top of all that the palliative care doctor explained very gently that she doesn't have very long. We knew it was coming but didn't want to hear it! They then left us alone for an hour and we had a very emotional talk with lots of tears and hugs but no anger. Acceptance is hard but there is no alternative.

Today she was more cheerful but very tired. We await the results of yet another scan tomorrow.

A bit of good news is that they want her to come home for Easter weekend and are working towards that. A district nurse will visit every day to load the pain driver pump and do any other checks. We all desperately want her home but I'm a little scared of the responsibility. Not telling anyone though.

This afternoon she had the hard task of discussing her sad prognosis with the boys. Her ex husband, their father, was there to support them. Despite their acrimonious divorce he has stepped up to the mark and will be there to advise them when the time comes as although she doesn't own any property, she has some good investments.

I won't visit tomorrow if they go ahead with the gastroscopy as she will be too tired and in any case I have to prepare for the long weekend as she will have visitors and some will be driving a long way but it will be easier if she's home and much nicer for her. It will be a sad and emotional time though.

Thank you all for continuing to think of us.

NfkDumpling Tue 16-Apr-19 15:58:28

Oh Merlot, I keep typing words in and deleting them as no words will do.

I wish I could give you and Mr Merlot proper big hugs and bring nourishing casseroles round. Not just virtual ones. XX.

crazyH Tue 16-Apr-19 15:51:28

How are you Merlot? Thinking of you xx

NanKate Tue 16-Apr-19 15:44:36

Merlot how desperately sad. My thoughts and prayers are with you and your family. ?

Anja Tue 16-Apr-19 07:20:34

Merlot there is nothing any of us can say to ease the pain and suffering that you are going through. But we are all thinking of you and feel so sad that this has happened to your lovely girl.

Menopaws Tue 16-Apr-19 06:51:50

flowers

LightAmber Tue 16-Apr-19 06:42:25

So very sorry. poppy

silverlining48 Mon 15-Apr-19 17:09:07

There are grans on here who have been in your heartbreaking situation. The pain is almost impossible to bear. Words don't really help, other than let you know that you and your daughter and the family are in all our thoughts. Keep your girl close and surround her with your love. One day at a time.

eazybee Mon 15-Apr-19 15:02:21

Just, so very very sorry.

Dottygran59 Mon 15-Apr-19 14:43:51

We've not 'spoken' before, Merlot, I'm quite new to GN, but needed to add my heartfelt wish for some comfort in this dreadful, shocking time. Clearly you are much loved on GN and all your virtual friends are here, surrounding you with love, please accept a virtual hug from a stranger, and know that you and your family are uppermost in my thoughts

Thorntrees Mon 15-Apr-19 14:34:54

Thank you, that’s very kind to think of me. I don’t want to intrude on Merlots thread though, we all have sad events in our lives, it’s the price we pay for love I suppose.

crazyH Mon 15-Apr-19 08:59:56

So sorry to hear about your daughter, Thorntree. Be brave !!

Bellanonna Mon 15-Apr-19 08:54:41

Thorntrees that’s so sad to read. Sending you a little hug.
Please come on here whenever you feel like a sympathetic ear.

Thorntrees Sun 14-Apr-19 16:16:59

I don’t post often but have been following your post Merlot. We too have an adult daughter with a life limiting condition so my heart goes out to you. Each day is so precious as we are so aware those days are likely to be few. I will keep you and your family in my thoughts and prayers as you try as I do to stay strong for your loved ones although inside our hearts are breaking.x

Susan56 Sun 14-Apr-19 09:24:38

Merlot,you and your family are in my thoughts and prayers.Sending much love and strength to you all.xx

Anniebach Sun 14-Apr-19 09:04:32

merlot I have no words, x

Luckygirl Sun 14-Apr-19 08:45:47

merlot - so many times you have propped me up with your kind posts when needed. And now I find I do not have the words to offer you in your hour of need. This is such a difficult moment in all your lives; but I would venture to say that your DD is clearly much loved and surrounded by those who care for her and this is the very best that any of us can hope for as our lives draw to a close.

I am holding you in my thoughts and in my heart.

flowers

GrandmainOz Sun 14-Apr-19 05:13:00

merlotthinking of you so much. I lost an adult child myself a few years ago (in different circumstances).
My heartfelt sympathy to you. I wish you strength . From one mother to another

Evie64 Sun 14-Apr-19 00:32:29

So so sorry Merlot. If there was something any of us on here could do for you know, we would. Sadly life and death are intrinsically linked and there really is nothing anyone can do. So sad for you and your family and of course your DD. I sincerely hope her passing is painless and quick. That's all any of us can really hope for love. Unbearable.....

harrigran Sun 14-Apr-19 00:21:21

Sending my thoughts and prayers to you and your family.

Namsnanny Sat 13-Apr-19 23:52:40

Merlotgran….Others have said it with more eloquence, but I too am thinking of you and your family at this difficult time.
flowers

crazyH Sat 13-Apr-19 23:27:13

My Lord - how do you do it, how do you carry on ,
on a day to day basis....our family have had one or two scares over the years but have come out of them. However, at that time. I couldn't eat. I couldn't sleep, couldn't clean the house, just concentrated on the problem in hand.
It may sound a bit simplistic. But where there's life, there is hope. So I would still wait and pray flowers

BradfordLass72 Sat 13-Apr-19 23:15:36

merlotgran I send my love and the hope you and the family find strength and serenity is this most awful of situations.

Since I first read of your daughter's diagnosis, I have shed many tears for her, and you, and you've been in my thoughts each day....and will continue to be remembered.

With much love flowers