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Worrying times

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User
Posted 02 May 2016 at 19:53
I haven't posted since Tim was on cabaxitaxel. He did so well on that (as he did on every other treatmen) but all good things come to an end too quickly. After cabaxitaxel began to fail trials were our only hope. We went to Marsden in November and the prof thought Tim would be the ideal candidate for the trial with the ovarian cancer drug (I forget the trial name). However after checking his biopsies in Febuary we found out he didn't have the faulty gene. He then tried for more trials but every time another problem appeared. His kidney function began to deteriorate and he ended up having a nephrostomy bag for a few days and a stent in left kidney. When the nephrostomy bag was removed the left stent was working however scans showed his right kidney that already had a stent was now not working, the cancer seems to now be in the right kidney.. He has now given up on having a trial as for a stage 1 trial his bloods would never meet the criteria. He is having blood tests every week now, his potassium levels seem to be the concern now as they are a bit on the high side. However the most worrying problem now is he has swelling round the scrotum, his penis seems to disappear in the swelling. Has anyone else had experience of scrotal oedema? His cancer is so unusual, no spread to bones that is why the prof at Marsden thought he would have been an ideal candidate for the trial as his cancer is so like ovarian cancer. Sorry to have ranted on but just felt the need to share all our problems with others, I really think his rocky journey is beginning to come to an end.
Linda
User
Posted 04 May 2016 at 21:42
Hi Linda,
I don't comment as much to people any more but I still look and read most posts and I see that you have been sent the comfort blanket it has been doing the rounds for a good few years know and the most wonderful thing about it is every time it arrives in the post for a new person it grows in strength and comfort because it is sent with love from all of us. Just a little tip a little soak in Lenor and a quick tumble dry before you send it on works wonders. 😍
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jul 2016 at 18:40
People always say (quite rightly I think) that funerals are a right of passage. I always think that the bereaved person will find it easier to talk to those who attended and shared the experience with you. I'm pleased that it was possible for Tim's last wishes to be carried out, you must have been so proud when your daughter stood up and read, what a difficult thing to do. It's obvious that Tim was much loved and not everyone can say that. The time ahead is bound to have many ups and downs Lindy, please let us know how you are getting on, believe it not I think of the many wives and partners bereaved over my years coming on here and wish them well. Some remain for a while, some can never face returning here, it's all understandable. We do continue to remember our lost men and their bereaved families.

Much love
Devonmaid xxxx
User
Posted 29 Jul 2016 at 10:14
The funeral yesterday was a wonderful celebration of Tim's life. It was exactly as Tim wanted it to be with an old school friend, our daughter and good friend from bowls all reading out their personal tribute to Tim and recounting their memories. It was very hard for them but Tim had asked them beforehand and that gave them the strength to carry out some of his last wishes. The crematorium was full, with people even having to stand out in the lobby. It made me proud to realise what a wonderful friend he was to so many as well as being a wonderful husband, dad and grandad. Now I need to gradually build myself a new life without him which I know is going to be hard.
User
Posted 03 May 2016 at 23:09
Hi linda
I am really sorry to hear of your husbands struggles. I can't offer any advice on treatments but my heart is reaching out to you.
In life nobody teaches us how to deal with the emotional and practical trials of looking after our loved ones. We unfortunately have to learn quickly as we travel this difficult journey. You are doing a fine job just being there, careing about his well being.
I think it's time for me to pass the universal comfort blanket onto you. It was sent to me with so much love, care and support which I really appreciated. I have had my turn and am more than happy to pass it on to you. I hope you feel the same comfort from it that I did.
Take care,
Lesley xx

User
Posted 03 May 2016 at 23:31

I am glad to see that Lesley has sent you the comfort blanket. It really does help to know that others are thinking of you.


Hang on in there - you're doing a good job!


Best wishes


Rosy x

User
Posted 04 May 2016 at 05:17

morning
yep the comfort blanket with all the love and warmth it has to offer from us all

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 13 Jun 2016 at 22:57
An update on Tim. He is getting increasingly weaker. After I have helped him in and out of the shower and helped him dress he manages to get downstairs and spends the day in his chair. He is managing to eat but isn't really interested in food. It is so sad to see him going downhill so quickly. I have had a lot of comfort from the blanket but have now sent it to Devonmaid as she is having an awful time.at the moment.
User
Posted 22 Jul 2016 at 21:11
Thank you all for all your kind responses. It is so good to know how many people are supporting me in thought. It has been a hectic few days, we now have the funeral arranged for nextThursday. My son and daughter have been such a wonderful support, they spent the first few days and nights with me. The house seems so quiet and empty with just me and the dog now! I did manage to go and play in a bowls match on Wednesday, which is what I am sure Tim would have wanted me to do and I think it was good to see so many of our friends after Tim's death, it will make seeing them at the funeral so much easier.
User
Posted 29 Jul 2016 at 11:07

I've always maintained that funerals are for the living - not the dead.


Standing room only eh? What a tribute and how wonderful for you and the family that people showed their love and support,  to Tim and all of you


I bet as well as the sadness there was also a lot of laughter.


It will take time to get used to being and doing things on your own but you know there are ladies on here who will give their wholehearted support and advice.


Best Wishes


Sandra


********

Edited by member 29 Jul 2016 at 11:08  | Reason: Not specified

We can't control the winds - but we can adjust our sails
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User
Posted 02 May 2016 at 21:25

Linda, so sorry to read your update. No advice or suggestions from me about treatment options, there is little that can be done about oedema but it might help if you can find Spurspark's report of his experience with Cabz. Someone better than me at using the search function may be able to find the thread for you.

Have you got support from the Macmillan nurses, Maggie's centre (if there is one near you) or local hospice? Have you applied for financial support as I think it could now reasonably be said that he is moving into the end-of-life stage where benefits are available to help you with purchasing / hiring equipment, paying for home care, etc. I believe the criteria is an estimate of less than 6 months but many doctors will sign it off if it is reasonable to think less than 12 months. Hopefully he will do better than that, but best to get the application in rather than miss out on something that will make things easier for you both.

Stay strong and brave x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 May 2016 at 09:40
Linda,

So sorry to read your latest news.

I just wanted you to know that I'm thinking of you both at this difficult time.

Steve
User
Posted 03 May 2016 at 18:27

Hi Lindy,


 


My partner had genital lympoedema, yet another wretched complication of PCa and treatments in his case. GP and oncology were of very little help. Google the Lymphoedema Support Network, an excellent charity. You can phone and speak to a knowledgeable person and their newsletter, etc is very helpful. If he has genital lymphoedema it does need to be diagnosed and treated, very difficult. as bandaging in that area is virtually impossible. Macmillan had a specialist Lympoedema service in our area, completely free which I found out about myself. Neil had some cycling type support pants also there are special types of massage which can aid fluid circulation. Regarding the stents, research in the South West found having one working stent is as good as having two and less invasive as long as one works. Went through all the same so really feel for you,


 


Fiona. xx

User
Posted 03 May 2016 at 23:09
Hi linda
I am really sorry to hear of your husbands struggles. I can't offer any advice on treatments but my heart is reaching out to you.
In life nobody teaches us how to deal with the emotional and practical trials of looking after our loved ones. We unfortunately have to learn quickly as we travel this difficult journey. You are doing a fine job just being there, careing about his well being.
I think it's time for me to pass the universal comfort blanket onto you. It was sent to me with so much love, care and support which I really appreciated. I have had my turn and am more than happy to pass it on to you. I hope you feel the same comfort from it that I did.
Take care,
Lesley xx

User
Posted 03 May 2016 at 23:31

I am glad to see that Lesley has sent you the comfort blanket. It really does help to know that others are thinking of you.


Hang on in there - you're doing a good job!


Best wishes


Rosy x

User
Posted 04 May 2016 at 05:17

morning
yep the comfort blanket with all the love and warmth it has to offer from us all

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 04 May 2016 at 11:38
Thank you all for your thoughts and I will take good care of the comfort blanket. It really does help knowing so many people are thinking of you.
Thank you Fiona for all your advice it was very helpful. We do have a lovely nurse from our local hospice who is always there for us and a very helpful consultant who we are seeing tomorrow.
Linda
User
Posted 04 May 2016 at 21:42
Hi Linda,
I don't comment as much to people any more but I still look and read most posts and I see that you have been sent the comfort blanket it has been doing the rounds for a good few years know and the most wonderful thing about it is every time it arrives in the post for a new person it grows in strength and comfort because it is sent with love from all of us. Just a little tip a little soak in Lenor and a quick tumble dry before you send it on works wonders. 😍
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 May 2016 at 22:29
Awful times for you Linda, I'm just commenting to let you know I've read your update. The comfort blanket spent a while with me and I'm hoping you can have a go at the tear stains I left on it, see if you can get them out, mind you Rosy and Harmony may have added a few along the way.

Love
Devonmaid xxxx
User
Posted 26 May 2016 at 21:44
Time for an update. The lymphodema has now spread to Tim's legs. He is finding it increasingly difficult to move around as the swelling and pain that goes with it makes it difficult. He has been prescribed oxycodane in a small dose (2.5mls). The hospice nurse comes tomorrow so perhaps he can up the dose. Sleeping isn't too bad as when he is still things are OK. We saw the oncologist last week and asked prognosis, she thought probably weeks rather than months as she could see how Tim had gone downhill in the last couple of months. We were expecting her to say this but it is still hard. We are lucky our son and daughter live nearby and we are still able to help with their childcare. We look after our daughters 2 year old daughter on a Monday and our sons 1 and 3 year old boys on a Wednesday. I think the grand kids have really helped Tim on his journey with this horrible disease. I am also finding a lot of support from friends especially friends from our bowls club, I am so pleased summer is here and I can go and enjoy a game of bowls it really helps to go out and relax for a bit. I have found a lot of comfort from the blanket it is lovely to know how much people care.
User
Posted 26 May 2016 at 22:12
Hi Lindy
I'm so sorry to see your update. It can't have been easy to write. I'm only grateful that you have the comfort of a close family and grandchildren, I know the impact our little one has had on John, she makes such a difference to our lives.

I think you need to keep the comfort blanket, you know while you have it we will all be thinking of you both and hoping for the best, even if the best is an easy passage out of this world, that's certainly my hope when our time comes.

Massive hugs
Devonmaid xxxxx
User
Posted 27 May 2016 at 06:52

I'm sad for you too Lindy and send my best wishes with that comfort blanket.

You're doing a wonderful job of care.

We can't control the winds - but we can adjust our sails
User
Posted 27 May 2016 at 23:56
Thinking of you
Louise x
User
Posted 28 May 2016 at 05:05

hi lindy, wrap that comfort blanket round you and we will all hug you


regards


nidge


 

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 28 May 2016 at 08:10

Hi Lindy, take comfort from that comfort blanket there are a lot of us hugging you with it.

Make memories now

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 28 May 2016 at 12:04
Lindy
big hugs from me too, that blanket spent quite a while with me and it really does help to know that others are thinking of you as you go through the coming weeks.

Tim has done all he can with your support and the support of your family and medical team. All you can do now is make him as comfortable as possible. try to make sure nothing is left unsaid between you and as Chris/Woody has said make memories.

I wish you strength and fortitude

We will all be thinking of you
xxx
Mo
User
Posted 13 Jun 2016 at 22:57
An update on Tim. He is getting increasingly weaker. After I have helped him in and out of the shower and helped him dress he manages to get downstairs and spends the day in his chair. He is managing to eat but isn't really interested in food. It is so sad to see him going downhill so quickly. I have had a lot of comfort from the blanket but have now sent it to Devonmaid as she is having an awful time.at the moment.
User
Posted 14 Jun 2016 at 00:10

So sorry to read this Lindy - how is the oedema?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jun 2016 at 08:22
The oedema is no better, in fact you can tell he has fluid also in his stomach and round his back. His last blood test showed his one remaining kidney is beginning to fail, Tim has decided he doesn't want a nephrostomy bag or other treatment that would require going in hospital and to let nature take its course. His worse pain is in his rectum, I think it is a combination of tumour and piles, whenever he stands up he seems to need to go to the loo so he stays sitting in his reclining chair with his feet up as he then feels comfortable and also he is able to sleep quite well in bed at night..
He is very keen on horse racing so at least this week with Royal Ascot he has something to take his mind off his problems!
Linda
User
Posted 14 Jun 2016 at 10:31

Thinking of you and sending hugs

User
Posted 14 Jun 2016 at 20:03

Big hugs from me too


Rosy x

User
Posted 14 Jun 2016 at 20:30
Strength to you both brother and sister.

Bazza
User
Posted 14 Jun 2016 at 20:36
Lindy
I feel so sad reading this, the feeling of inevitability comes over very strongly, and I can understand why from the way you describe the situation. Though you sent me the comfort blanket (so nice of you to wash it and make it smell so gorgeous), I have let it cover me in its wonderful love and care and am sending it right back because your need is great right this minute.

I wish there was something I could say to help, but I know there isn't so I really just wanted to send you a virtual hug.

Much love
Devonmaid xxxxxx
User
Posted 14 Jun 2016 at 23:14

Sorry to read this - they drew a biro line on Stan's chest and said if the oedema reached that point, to phone for an ambulance. Eventually it did, and we did - he died in hospital the following day so in hindsight, I wished we hadn't called.

Of course, lack of mobility will make the swelling worse - can they not give him anything stronger for the pain (without zonking him out, of course)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jun 2016 at 07:37
Linda

Just to say we are thinking of you.

Thanks Chris
User
Posted 15 Jun 2016 at 08:28

Sending our thoughts and strength to you both x

User
Posted 15 Jun 2016 at 08:39

Hugs and best wishes Lindy

We can't control the winds - but we can adjust our sails
User
Posted 15 Jun 2016 at 10:41

Such a difficult time for you both. Kind thoughts.

Barry
User
Posted 15 Jun 2016 at 11:46

hi lindy
just do what you do and keep smileing

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 15 Jun 2016 at 22:24
Hi lindy
I am really sorry to hear of your more recent struggles. I hope too he is getting adequate pain relief.
Sending you a big hugg,
Take care.
Lesley xx
User
Posted 17 Jul 2016 at 01:08
I am very sad to say Tim passed away peacefully at 8 o'clock this evening. He had been going downhill rapidly the last couple of weeks. Our local hospice have been wonderful with all their help. We got him a bed downstairs for the last couple of weeks which made life so much easier. For the last week we have had careers coming in 3 or 4 times a day and thank goodness we did as even though for a couple of days we didn't really need them since Monday he deteriorated rapidly and by Friday we couldn't get him out of bed. When I had a bit of a meltdown talking to the hospice nurse on Thursday she quickly arranged for a Marie Curie nurse to stay Thursday and Friday night. What a relief that was not to have the worry of listening out and going downstairs to check all was OK although it did mean I had to have the dog sleeping with me and she always seemed to get restless at 3in the morning!! Today I had a lovely day with my 2 children and 4 grandchildren. My wonderful son in law cooked a BBQ and althoughTim didn't seem to be aware of anything I am sure he heard all his family and smelt the BBQ through his window!! His sister and her daughter were also round and it wasn't until it was just me and my son and daughter at home that his breathing changed and he peacefully slipped away.
I now know I have the hard job of living a life without him after 45 years but I have a lovely family to help me.

Edited by member 17 Jul 2016 at 03:07  | Reason: Not specified

User
Posted 17 Jul 2016 at 01:31

Lindy, how brave you are and how wonderful that Tim's last hours were filled with family and sounds of happiness and joy. They say that our hearing is the last sense to go - I feel sure that he let go and slipped away because his heart could hear that you would be surrounded with love. I wish for you just a little more of the strength that you have already shown, to get you through the coming days, weeks and months.

Sleep peacefully Tim x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jul 2016 at 02:22

Lindy,

So sorry Tim has passed away. Although you will have known that the end was near, it's still a shock, the effects of which sometimes take a time to register. I wish you and your family fortitude in coming to terms with your loss and extend my condolences.

Barry
User
Posted 17 Jul 2016 at 06:10
Lundy,

I am so sorry to have read your news and wish you and your family well for the coming days and beyond. Having your family with you and Tim yesterday must have meant much so much to him and you too. My sincere condolences to you all.

John
User
Posted 17 Jul 2016 at 06:28

I'm so very sorry for you and your family Lindy. You did everything you could and made sure Tim was as comfortable as he could be and that he was surrounded by family and love. Do take care of yourself in the weeks to come.


Much love Rosy x 

User
Posted 17 Jul 2016 at 07:26

Hi Lindy
My thoughts will be with you all day after reading this first thing today. Sending strength and warmth. Forty-five years must be rammed with memories xx

Edited by member 17 Jul 2016 at 08:24  | Reason: Not specified

User
Posted 17 Jul 2016 at 07:33
Lindy,

So very sorry to read this news.

Condolences to you and your family.

Keep strong and Keep Right On.

KRO...
User
Posted 17 Jul 2016 at 08:08
L

So sad and sorry to hear of your loss, we have lost too many good men to this disease. Please accept my sincere condolences and remember to look after yourself.

Thanks Chris
User
Posted 17 Jul 2016 at 08:38

Thinking of you Lindy at this sad time.

Please accept my sincere condolences.


*******

We can't control the winds - but we can adjust our sails
User
Posted 17 Jul 2016 at 09:31
Hi lindy
So sorry to read of your loss.
Sending you my sincerest condolences and a big hug.
Take care
Lesley xx
User
Posted 17 Jul 2016 at 11:36

So sorry to hear this. Send my condolences to you and your family, Love,


 


Fiona. x


 

User
Posted 17 Jul 2016 at 13:07

So sorry to hear this. Sending condolences to you and your family

Bri xx

User
Posted 17 Jul 2016 at 14:56

Lindy, so sorry for your loss it has been a hard struggle and he is at peace now. It was good that you spent the last day with your family and knowing that he was with you even though he was in another room, but was getting one last smell/taste of a BBQ.

Stay strong and remember all the good things that were your 45 years and your life.

My thoughts are with you and your family at this terribly sad time.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 17 Jul 2016 at 17:13
I am so sorry to read of your loss, my sincere condolences

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 17 Jul 2016 at 18:16

Hi Lindy
I'm so very sad to hear your sad news, I hope you can take a tiny bit of comfort from knowing you and your family are in our thoughts and prayers 🙏🏻X

The only time you should look back is to see how far you have come
User
Posted 17 Jul 2016 at 20:14
I am so sorry to hear this news. Please accept my sincerest condolences at this very sad time.
User
Posted 17 Jul 2016 at 20:30
Lindy

I am so sorry for your loss, my sincere condolences to you and your family.

I have to say what a beautifully worded post, Tim had family and freinds around him and he will have seen how much support they will all give you going forwards. That will have given him comfort I am sure.

I wish you all the very best and will raise a glass to your Tim tonight, may he rest in peace

big hugs
xxxx
Mo
User
Posted 17 Jul 2016 at 21:56
Hi Lindy,
I'm so sorry for the loss of Tim but what a wonderful way to go, in the peace and love of your family at home after a day of hearing and smelling family life and lovely food. After all you've both been through I know this is hard to bear. If Tim could say I'm sure he would be so grateful for everything you did for him, the love you and shines out.

My sincere condolences and love
Devonmaid xxxxxx
User
Posted 17 Jul 2016 at 23:37

Hi Lindy,


I'm so sorry to hear of your sad news.  I'm sure that Tim would have been so proud of you for the way you cared for him.  May he rest in peace.


Steve

 
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