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Each day a challenge

User
Posted 22 Jul 2020 at 21:16

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

Ido4

User
Posted 22 Jul 2020 at 21:21

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


Love to you all xx

User
Posted 23 Jul 2020 at 23:52

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 08:09

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


Phil 

User
Posted 24 Jul 2020 at 23:19

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 09:12

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 10:49

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 10:50  | Reason: Not specified

User
Posted 25 Jul 2020 at 11:00

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 12:17

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

User
Posted 29 Jul 2020 at 15:31

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

User
Posted 30 Jul 2020 at 09:46

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 11:13

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 15:45

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 16:58
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 18:29

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 07:21

Heart breaking to read Gillyflower


My thoughts are with you

User
Posted 31 Jul 2020 at 09:02

Sending love and hugs to you both.

Ido4

User
Posted 31 Jul 2020 at 09:03
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 20:01
Thinking of you both
User
Posted 31 Jul 2020 at 22:35
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
 
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