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Each day a challenge

User
Posted 19 Jul 2020 at 22:31

Gillyflower I am so sorry to hear this. I hope his sleep is peaceful and you get some rest too. Each twenty minutes to be treasured . Big hugs to you all. Xx


Clare

User
Posted 19 Jul 2020 at 23:49

Hi Gilly,


Big hug. 


Gordon

User
Posted 20 Jul 2020 at 02:59

So sorry to hear about your situation now and hope you continue to be comforted by your lovely family. Best wishes to you all. 


Ann x

User
Posted 20 Jul 2020 at 10:27

So sorry to hear this news Gilly. Thinking of you at this difficult time. It is good you have close family to be with you.


Phil

User
Posted 20 Jul 2020 at 11:58

I’m so sorry to hear this Gilly X

User
Posted 20 Jul 2020 at 14:18

Your family are in our thoughts and prayers.


Kind Regards

User
Posted 20 Jul 2020 at 17:43

In my prayers 😘

User
Posted 20 Jul 2020 at 23:46

Tough day today. A visit from our vicar and facing up to things that were hard to think about leaving us a bit down tho peaceful too. G is very poorly today and I fear we have weeks not months. Each day a little weaker and less able to do things. Bazza was so brave and voiced his tribulations so well and I think of him with admiration.Today we are thankful for a four pronged stick and a raised toilet frame. It's the little things that matter.

User
Posted 21 Jul 2020 at 06:27

I am so sad when I read what you are both going through but grateful that you are sharing reality at this time so others like me can be aware of what may be to come.  I hope there are some good bits today for you.

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 Jul 2020 at 21:55
A little positive post. Today the children and I managed to get G over to his seaside birthplace for the day thanks to the loan of a ground floor flat from a friend and we enjoyed a blow by the sea and chats with old friends. It was a special family day we will always cherish.
User
Posted 22 Jul 2020 at 22:16

So glad you all managed to have such a special day. Sending love.

Ido4

User
Posted 22 Jul 2020 at 22:21

That’s so good to hear Gilly.  Glad you all enjoyed your special time together to cherish.  


Love to you all xx

User
Posted 24 Jul 2020 at 00:52

How lovely to read. There really is something about sea air and for me both fish and chips and ice cream are. Eat eaten at the seaside!


Sounds fab


big hug


Clare

User
Posted 24 Jul 2020 at 09:09

So happy for you that you’ve had a lovely day to cherish.


Phil 

User
Posted 25 Jul 2020 at 00:19

two days on from trip - G is exhausted and weak. Even his voice is weak and  I am finding it so hard to see him suffering and being so despondent. Also silly things like realising he always did the little things like resetting the oven clock and feeling frustrated because he can't do it any more.


I hope he can sleep tonight and awake refreshed.


I am not ready for him to leave me and it is so hard to see the decline so suddenly.


Offloading here - just finding it hard tonight.


 


 


 


 


 

User
Posted 25 Jul 2020 at 10:12

So sorry to read this and I do understand. It is now over ten years since I was in a similar situation and I'm trying to think back for anything useful to say.


I hope G managed to sleep and to feel a little more refreshed today. I remember a doctor telling Mike to think of energy as money in the bank and on a good day to use a little, but save some for tomorrow. But it is so important to do the things you want to do, see the people you want to see, so probably best to overdo it sometimes, and rest afterwards.


It is difficult to cope with the little things like resetting the oven clock - I've only just learned to do mine, I used to wait for my son to visit. Bringing the shopping in, clearing the drive after it snowed, are the things I remember sneaking around to do so as not to cause Mike to feel frustrated he could no longer do them.


On a positive Mike did start to rely on me in some respects and started to let me do things for him which he realised he couldn't do - I still feel it was a privilege to be able to do so, and it still brings me comfort to remember.


Spending time just being together, dealing with that day's problems and trying not to think about tomorrow helped, but it is so different for us all, please do what you instinctively feel is right for you both.


And take any offers of help, people want to help but don't always know what to do. It may make a big difference just to have someone nip to the shops for something you need. Or to sit with G whilst you just grab a breath of fresh air can make it easier to cope. 


Try to take care of you, rest even if you can't sleep, eat even if you don't want to. 


Janet, x

User
Posted 25 Jul 2020 at 11:49

You are finding an inner strength from somewhere Gilly, thank God, supporting G and your children with the special love you have for them.  It’s good that you can offload how you feel and from what I have read on this forum in the short time I have been on here, everyone will be there for you and G.  There are many members who have been through, or are going through, similar difficult times, like jlbatty who has come on to support you.



I am praying for you all and hope G managed a good night’s rest and finds a little energy today.


Love Ange xx

Edited by member 25 Jul 2020 at 11:50  | Reason: Not specified

User
Posted 25 Jul 2020 at 12:00

Thank you so much for all that very good advice


 I have great support of family, neighbours and friends and he is a little brighter today and we are doing necessary things but nothing too taxing. 


Taking each day as it comes.

User
Posted 25 Jul 2020 at 13:17

That’s good to hear.  Enjoy your day together x

User
Posted 29 Jul 2020 at 16:31

Take care of yourself too. You are also going through so mush at the moment

User
Posted 30 Jul 2020 at 10:46

Life feels so surreal at the moment. My dear G is in no pain but is so frail it breaks my heart. My strong man now struggles to lift a teacup. This decline seems to be so rapid and I find it hard to accept that it is happening.


An elderly neighbour just asked me where he was and was shocked when I told him - "but he looked so fit".


I understand about the armour you wear at times like this but there is  weird detachment  as if it might still be ok when you know it never will be.


I think of Bazza and all the other brave strong men who have succumbed to this deadly disease and pray there will be a lasting cure one day for all those men in the world who may get it.


I fear for my wonderful son who has seen his grandad and now Dad become so weak.


I take each hour now as it comes - no plans are made but we do what we can when the energy is there. We have had almost 54 years together and I love him as much as the day I first put my hand in his - that made me feel so safe.


 


 

User
Posted 30 Jul 2020 at 12:13

Oh bless you Gilly, it’s heartbreaking to read your update.  It’s a blessing that your dear G is not in pain and has such love and support.  Sending you both love and hugs.


Angex 

User
Posted 30 Jul 2020 at 16:45

Oh Gilly , this all seems to have happened so fast. I can’t imagine how you feel but my thoughts are with you.


Phil

User
Posted 30 Jul 2020 at 17:58
Oh Gilly my heart is with you both. I worked as a HCA for a year and had a guy in with PCA. His decline over 3 months was horrible considering I was classed as incurable myself. Very very sad to watch. God strength to you all xx

If life gives you lemons , then make lemonade
User
Posted 30 Jul 2020 at 19:29

Gillyflower 


Just want to send you love and hugs at this difficult time, don't forget to look after yourself.


Thanks Chris

User
Posted 31 Jul 2020 at 08:21

Heart breaking to read Gillyflower


My thoughts are with you

User
Posted 31 Jul 2020 at 10:02

Sending love and hugs to you both.

Ido4

User
Posted 31 Jul 2020 at 10:03
I don't know whether my words will help you but I think of you and pray you both have more time.
My thoughts are with you both.

Paul
User
Posted 31 Jul 2020 at 21:01
Thinking of you both
User
Posted 31 Jul 2020 at 23:35
Oh Gilly

It really has been a rapid change and that is mentally and well as physically a difficult thing to deal with especially given the 54 years where he has been your fit husband.

I echo your prayers for a successful piece of research to put this disease in the history books. I too have a son with a dad and a grandad having had this disease.

Big hug Gilly. I understand the surreal feeling.xx
User
Posted 03 Aug 2020 at 22:49

so - a worrying day. After a rough few days of deteriorating health and new symptoms, G was taken to hospital alone as no visitors allowed. Macmillan nurse had suggested possible spinal chord compression.


He had had an mri and an xray and I guess we will know more tomorrow. He is on a nebuliser and steroids and they hope to raise potassium levels.


Hoping for the best now.  Sleeping in my own bed for the first time since March. Feel pretty tired so off to sleep now.

Edited by member 03 Aug 2020 at 22:49  | Reason: Not specified

User
Posted 04 Aug 2020 at 11:02

Hope you managed a reasonable sleep and that G is more comfortable. My thoughts are with you both. 

Ido4

User
Posted 06 Aug 2020 at 13:29

update - three days in hospital following infection and recurrence of kidney failure so another nephrostomy done.


Now so frail,  he is due home this afternoon for care at home with support of community nurses etc. The NHS have pulled out all the stops to get him home - can't praise them enough.


I think it will be bed from now on as too weak to be up for long.


 


 


 

User
Posted 06 Aug 2020 at 15:54
My thoughts are with you. Keep talking.
Sending strength xx

If life gives you lemons , then make lemonade
User
Posted 06 Aug 2020 at 20:53

Thinking of you both. 

Ido4

User
Posted 06 Aug 2020 at 21:37

Thank you to you all for your kind wishes. We have had such good care today - two community carers to attend to personal needs and get him comfortable and two district nurses to attend to a couple of medical issues which cropped up and the offer of help if I need it during the night.


These are the unsung heroes of the nhs - the ones who are there for the elderly,infirm and terminally ill at all times and who are pleasant and caring even though they must get tired themselves.


I can't believe how good everybody has been but I feel desperately sad for G who has to depend on people for absolutely everything. 


All I can say to everyone is to enjoy every moment of their lives, to do all those mad things you want to do and love life and your families.


We did enjoy things and I think that poor G is unlucky to reach this stage before he is ready. We can't understand it and there is that big question - if covid hadn't come and if he had had all his chemotherapy treatment would it be any different? 


We will never know but this pandemic has caused sorrow in many different ways.


 

User
Posted 08 Aug 2020 at 23:43

I have to report that my darling G passed peacefully, early this morning. We had only two nights at home and he gradually became worse, seeing and hearing people who weren't there and worrying constantly about things still to do, so that he could not sleep.


Eventually, last night, after almost half hourly sips of water and little bits of food, he fell into a deep sleep and he just slipped away as I went to him.


There is no measure to my feelings of sadness, but my children have been wonderful.


Now the rest of my life will be a challenge to live life without him.

User
Posted 08 Aug 2020 at 23:50
I am so sorry Gillyflower, this was such a rapid decline. All I can wish you is a little more of the strength you have already shown to see you through the coming days and weeks. Take good care of yourself - G must have been so proud of you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2020 at 23:52

So sorry to read this. Condolences to you and family.

User
Posted 09 Aug 2020 at 00:19

My condolences. It has been hard reading this thread over the last few weeks. The inevitable end which has now sadly arrived. These last few months were tough for you. Of course whether it is a cancer or something else we will all share the same fate eventually, so we just have to make the best of our time whilst we are here. I think you and G did well together for a long time. With the support of your friends and family you will get through. Thank you for keeping this little community informed at this very trying time for you.... Hugs

Dave

User
Posted 09 Aug 2020 at 05:36
I am so sorry for your loss, my thoughts are with you and you family.


barbara x
User
Posted 09 Aug 2020 at 05:53
Really sad to hear of your families rapid loss Gilly. There is no easy way , or no non-heartbreaking way , but the rapid decline could be a blessing in disguise xx
Thinking of you x

If life gives you lemons , then make lemonade
User
Posted 09 Aug 2020 at 07:57

Thank you everyone. It has helped to have a place to write down feelings and to share but I hope I haven't made it harder for those you still suffer from this disease. Many people recover and live a lot longer and we have to believe that one day there will  be a complete cure.


We lived with cancer for almost ten years and through it   all we always hoped we could keep it at bay with each new treatment.


What makes it hard is that we shielded from covid for many months and missed precious time we could have used outside the house while G was still mobile and able to do things himself.


This morning, the sun is streaming in and I know I go down to an empty house. I have been grieving for many days as I watched him slipping away from me and I have grieved before but this is different.  This time I am more than lonely - I have faith and I hope he is with old friends and reunited with our dog again.  


Wishing everyone a safe and happy Sunday. Keep  living life to the full and treat every moment as a special gift.


 

User
Posted 09 Aug 2020 at 08:08

So sorry to hear of your loss, please accept my sincere condolences.


Thanks Chris

User
Posted 09 Aug 2020 at 08:26

I am so sorry to read your sad news, I hope you can latch onto all the good memories.


i for one thank you for sharing everything you did as it is helping me come to terms with what will be one day in my world.


condolenses to you and your family.

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 09 Aug 2020 at 08:40

Very sorry to hear your sad news. As a new comer to this forum please know that your posts are very welcome. 

User
Posted 09 Aug 2020 at 10:27

I am so sorry to read this Gillyflower. You have been so strong, sending my condolences to you and your family.


 

Ido4

User
Posted 09 Aug 2020 at 11:17
So sorry for your loss Gillyflower cherish the memories you made together and look after yourself.

Cheers
Bill

User
Posted 09 Aug 2020 at 12:59

So sorry to read this, you have been strong, loving and gave G. all the love and care, you area special lady. 


Take care of yourself.


Leila x

User
Posted 09 Aug 2020 at 14:42

Gilly, so sorry for your loss. I read your updates and could feel that I knew the two of you - painful though it is, thank-you for posting. My thoughts are with you and your family.

 
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