Worrying times

Worrying times

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Posted 02 May 2016 at 18:53

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

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Posted 04 May 2016 at 20:42

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 17:40

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 09:14

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 22:09

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

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Posted 03 May 2016 at 22:31

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

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Posted 04 May 2016 at 04:17

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 21:57

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.

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Posted 22 Jul 2016 at 20:11

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 10:07

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 10:08 | Reason: Not specified

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

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Posted 02 May 2016 at 20:25

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

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Posted 03 May 2016 at 08:40

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 17:27

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 22:09

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.

Take care,

Lesley xx

User

Posted 03 May 2016 at 22:31

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 04:17

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 10:38

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

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Posted 04 May 2016 at 20:42

Hi Linda,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 May 2016 at 21:29

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 20:44

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 21:12

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 05:52

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 22:56

Thinking of you

Louise x

User

Posted 28 May 2016 at 04:05

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 07:10

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 11:04

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

User

Posted 13 Jun 2016 at 21:57

User

Posted 13 Jun 2016 at 23:10

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 07:22

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

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