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Each day a challenge

User
Posted 07 Jun 2020 at 08:52

I have read all the recent posts and to all those who are doing well and getting positive news, I am really pleased for you. 

This year has been a struggle and real challenge. Diagnosed in 2009 with psa 23 and gleason 7 & 8. My oh has had radiotherapy, hormone treatment, arberatitone and 6 session of chemotherapy out of 10 he was due to have but which were stopped because of coronavirus. He also has three monthly Zoladex injections and until April he was doing ok apart from neuropathy and swelling in one leg and both feet. 

He was sent for a dvt scan. However he was given a blood thinner and despite informing the nurse he was passing a lot of blood he was given a second. The scan showed no clot in his leg but blood tests showed very high creatinine. This resulted in him being hospitalised for a double nephrostomy followed by metal uretal stents. He continued to pass lots of blood and it took two weeks in isolation  to see both kidneys working ok again. He has lost two stone and all muscle tone so that in just 7 weeks he has gone from a pretty fit man to someone who can hardly walk due to the continuing neuropathy and general weakness as eating and drinking is a huge challenge after losing his appetite completely in hospital. 

He also has had a urine infection and Suspected cellulitis in the affected leg.

We are trying hard ( we call ourselves a team) to overcome these problems with a cocktail of drugs to combat nausea and infection and every day is a huge challenge but he is a fighter and having overcome so much, we hope he can get past this to have a bit longer to try and enjoy life again.

I don't expect comments, I just wanted to say that you can fight this horrible cancer but it isn't easy and to the outside world you might seem to be doing ok but nobody can fully know how much energy it takes just to keep ahead of the cancer.

Time to face another day.๐Ÿ˜

User
Posted 07 Jun 2020 at 08:52

I have read all the recent posts and to all those who are doing well and getting positive news, I am really pleased for you. 

This year has been a struggle and real challenge. Diagnosed in 2009 with psa 23 and gleason 7 & 8. My oh has had radiotherapy, hormone treatment, arberatitone and 6 session of chemotherapy out of 10 he was due to have but which were stopped because of coronavirus. He also has three monthly Zoladex injections and until April he was doing ok apart from neuropathy and swelling in one leg and both feet. 

He was sent for a dvt scan. However he was given a blood thinner and despite informing the nurse he was passing a lot of blood he was given a second. The scan showed no clot in his leg but blood tests showed very high creatinine. This resulted in him being hospitalised for a double nephrostomy followed by metal uretal stents. He continued to pass lots of blood and it took two weeks in isolation  to see both kidneys working ok again. He has lost two stone and all muscle tone so that in just 7 weeks he has gone from a pretty fit man to someone who can hardly walk due to the continuing neuropathy and general weakness as eating and drinking is a huge challenge after losing his appetite completely in hospital. 

He also has had a urine infection and Suspected cellulitis in the affected leg.

We are trying hard ( we call ourselves a team) to overcome these problems with a cocktail of drugs to combat nausea and infection and every day is a huge challenge but he is a fighter and having overcome so much, we hope he can get past this to have a bit longer to try and enjoy life again.

I don't expect comments, I just wanted to say that you can fight this horrible cancer but it isn't easy and to the outside world you might seem to be doing ok but nobody can fully know how much energy it takes just to keep ahead of the cancer.

Time to face another day.๐Ÿ˜

User
Posted 02 Sep 2020 at 22:05

Thank you all for being so kind. It seems such a long time since that Christmas Eve when we were first told that the cancer was there. It was such a shock at the time but I think we dealt with the cancer journey as well as we could. Today has been especially tough, for no real reason, other than I woke up suddenly from a snooze and was shocked to find G wasn't in the seat beside me . The tears have been plentiful today and the aching longing is hard to deal with but I am calmer now and know that this is how it is going to be. I had niggling doubts about some of the treatments and called my own gp who spent a long time talking me through things and we came to the realisation that although things could have been a little less intrusive, there was nothing anybody could have done to prevent the outcome as there were so many things going wrong at once  that he couldn't fight it any longer.

I do pray that each and every one of you who are going through your own journeys, can embrace the lives you have and do everything you want to do. Don't wait, or put things off till the time is right.

This world we live in now, with the coronavirus is very different from the one we all knew before and there are some things we cannot do, but we have to make the most of every day. One day there will be a way to stop this cancer in its tracks and stop it from spreading.  We have to have hope for all your futures.

User
Posted 15 Dec 2020 at 19:09

I just wanted to wish all members of the group a happy and peaceful Christmas and that you all have a safe Christmas whether you choose to share it with your family or stay safe in your own households.

It is now 18 weeks since my darling G left me and I find it really hard and in the sanctuary of my own home, I cry often and miss him more than any words can ever say. The emptiness in the house hits me at times and I try to get out somewhere  each day, even if it is only a short walk.

To the outside world I am coping well, I can still smile and chat to people but the isolation felt due to the pandemic is really hard  - no visitors in the house  and it is getting cold to stand chatting outside. I find myself self distancing as a normal thing  now. 

I don't know what the future will hold but I pray that we will find a way out of this restricted way of life. Friends have been supportive and ring quite often but we lost another of G's friends shortly after he died, then his best man's sister died and an old friend of mine died whilst another is dying. It feels as if it has been the worst year of my life and I have had many losses before.

Stay safe everyone, love each other and enjoy Christmas in the best way you can. I hope to have my closest family here on Christmas day but we will be very careful with windows open etc and seating well spaced. Luckily I can extend the table a lot!

Sometimes I can't believe we went through all those years of hospital appointments and pain. Memories suddenly pop up unexpectedly and bring it all back. I still haven't heard anything about my heart tests but hopefully 2021 will be a good year for us all and that more research will bring better treatments for prostate cancer.

All the best everyone. Xx

 

 

User
Posted 20 Sep 2020 at 08:50

The sun is shining and it is a beautiful day. There is a zoom service to watch from our Church if I wish and I am determined to make the most of today before we move into those dreary wet days in winter. I have been amazed at how many huge lorry loads of potatoes the local farmer has taken to a depot somewhere. He has had a bumper crop and it reminds me that life is a series of cycles , with good years and bad ones. I am so thankful for the wonderful life I have had so far, with all the good and bad times, that all passed and are in my memories. 

Still the lorries are trundling past, busy people going about their work while the sun shines. 

So folks, enjoy today, hug your loved ones and have a happy time within the Covid restrictions. We have all been so affected by this,  but we have to remember that many people are affected more on a daily basis by cancer, strokes and other afflictions and I think we have to not forget those people as we try to stay covid free.

By the way - I have decorated a small bedroom and the paintwork looks OK so one small achievement so far. Next is the decluttering I need to do now that charity shops are taking things in again.

I am sure that you will ge pleased to know that donations to prostate cancer uk in memory of G reached over £1800 so I am so grateful to all those people who gave to such an important cause. One day even better treatments will be found. 

Have a good day everyone. 

 

 

 

User
Posted 17 Aug 2020 at 15:14

Thank you so much everyone. I am taking time out and watching a film this afternoon but imagining my dear husband is just in the next room.

So much to do but my children are fabulous and a dear friend who went through the same loss has warned me I might crash, must eat and must look after myself in case I burn out - Hence the lazy afternoon!

I feel so much for all of you who are battling with this awful disease. I will do all I can to keep supporting the pc charity and if anyone wants support I will pop on here now and then because it really helped to share the moments I found difficult.

Thank you all.

User
Posted 06 Sep 2020 at 01:39

Thank you. My children have been amazing but I do try to let them express their sadness at losing a great Dad too.G's friends are having to deal with their own pain too. One close friend rings every week which is a comfort to us both in different ways.

I find it hard to read some threads with an awareness that some people will be facing the same as we did in a few months or weeks.

I think it would be helpful if doctors told people what to expect in the end of life period. I knew three weeks before G died that things were progressing very quickly but it was quite frightening how quickly the changes came, the reslessness, the urgency to sort things out, the gradual loss of the ability to walk, then stand and other losses of normal function. It was scary for us both and it was only when they sent him home from hospital that we really had to accept it was nearly over.

If I can help anyone, I will. Grief is a strange process and some days you will feel fine and then feel guilty because you got through the day with only a few tears shed and the next day might be totally different when you feel very alone and cry a lot. It is all normal and never feel you need to follow an expected pattern. Let each day be just as it is buf if you feel you are sinking into depression then seek help as soon as you can.

Tomorrow is another day - make it special.

 

 

 

 

 

User
Posted 28 Sep 2020 at 19:59

We had time to evaluate our whole life and there were things we still wanted to do but we looked back on a good life with memories that are precious. Everyone has a few hiccups along the way but if you can get over those it makes your bond stronger. There are still things I wish I had done and said on his last day, but it is as if I couldn't believe he was dying and thought I would have more time , so those are regrets I have to live with  but I still tell him every day how much I will always love him and I hope that in some way he hears me.

Love never dies. I have his love letters and he loved me from a few weeks after we started dating. I was blessed with a lovely man.

 

User
Posted 09 Sep 2020 at 16:38

I read the new threads and am constantly amazed at the different treatments and progress. My G was doing so well on the chemo - no side affects to speak of and reduction in mets. How devasting that he had to stop due to Covid and subsequently the cancer spread alarmingly. There are no certainties extra chemo would have given him more time, but my heart is broken to think that we were denied that chance because of the virus. 

Each day, it gets harder, some days I can't speak to people without crying and I know it is normal but it is a tough time. G would want me to carry on and I am trying but even having a flu jab on my own today reminded me we will never share anything again.

Good luck all you guys out there - keep fighting - one day there will be a cure.

 

 

User
Posted 21 Nov 2020 at 20:21

I have joined a UK widow/widower group - all very supportive and all at different stages. I manage some of the time and am still desperately sad and expect to feel that for a long time but today was a good day spent with my little granddaughter making a Christmas cake. The spices and smells of cooking were nice.

Last Saturday night was spent in A&E as my heart  began to race and I was unwell. Having lots of tests to see what is happening but I know the stress of everything came to a head last weekend after a very emotional few days where tears wouldn't stop and my heartbreak was overwhelming.

I feel ok now but anxious about the causes of my erratic heart. This isn't an easy journey after such a dreadful experience with my husband in his last days.

Cancer is such a horrendous disease and whilst I am grateful for the extra years we had together , it was often tough and facing life alone is hard. He told me I had to be strong and I try every day but I miss him every second. Enjoy every moment of your lives together and don't dwell on what might come - just deal with each thing as you can.

I just feel sad that he had to know he was dying, it must have been mental torture for him and although we cried together, I can only imagine the agony he felt when he so wanted to live.

 

User
Posted 13 Jun 2020 at 21:40

Thank you. I am happy to report that there is an improvement in appetite with a return to regular small meals. Very shaky day yesterday but bit better today plus family visited at a safe distance which pleased us both. We keep plodding on with each wobble met with a "oops a daisy "๐Ÿ˜‚

User
Posted 02 Jul 2020 at 00:02
Gilly, don't forget to take care of yourself; eat well, rest as best as you can take a little time for yourself if the opportunity arises, even just a short walk. Someone has to care for the carer x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2020 at 11:42
Thanks again Janet and Lyn too.

Yesterday I was out with my son and grand-daughter and found myself marvelling at the clouds in the sky and the wild flowers underfoot as well as moorhens diving on a sun splashed lake. I felt alive and strangely happy for a few hours. I missed G so much but I felt as if it was ok to still enjoy nature and the pleasure of company.

The house still feels empty but I don't feel alone all of the time. I think my gorgeous G is telling me to get on with life and enjoy it again while I can. I am sure he is with me at every step and if I falter he will try to rescue me again.

The longing to hug him is always there but I am taking baby steps to learn to do things on my own.

The weird thing is that I have never had to be completely on my own. I lived with other students a s a teenager and married straight from university so this is a very strange experience for me. Thank goodness for a garden and things to do. Have a good day everyone and remember to always tell people how much they mean to you.

User
Posted 07 Jun 2020 at 16:10
As above. Love and hugs. Five years down the road now post surgery and incurable. Itโ€™s a mental torture that never goes away. I so hope things improve enough for you both that you get some real quality time together again. Donโ€™t waste a second of it. Hugs x
User
Posted 07 Jun 2020 at 19:18

My heart goes out to you both. We are just starting out on the journey with a newly diagnosed cancer. Today we are drained and shattered beyond the hardest shifts we’ve ever worked.....we told our family. Healing thoughts to you ๐ŸŒน

User
Posted 13 Jun 2020 at 23:37

That’s good to hear re appetite plus family visits. We are desperate for normal time to be spent with our grown up children as they are just the best company. Lovely you have had a visit. 

Hopefully regular food and that morale boost will lead to  a bounce back and a few less wobbles. 

Good luck with the scans you have coming 

 

Clare

User
Posted 03 Jul 2020 at 13:22

Originally Posted by: Online Community Member

We are trying hard ( we call ourselves a team) to overcome these problems with a cocktail of drugs to combat nausea and infection and every day is a huge challenge but he is a fighter and having overcome so much, we hope he can get past this to have a bit longer to try and enjoy life again.

I don't expect comments, I just wanted to say that you can fight this horrible cancer but it isn't easy and to the outside world you might seem to be doing ok but nobody can fully know how much energy it takes just to keep ahead of the cancer.

A nice use of words.  You appear a great support that must have helped him to be a fighter.
All the best.  Peter

User
Posted 25 Sep 2020 at 21:10
Dear Gilly , Iโ€™m not great with words mostly. Be kind to yourself and try not to be so harsh on yourself. Youโ€™ve suffered unbelievably recently and are undergoing a very natural process of grieving. I think you are doing that really well. You are letting it go emotionally and also verbally to us also. That will be doing you the world of good.

This may sound flippant but you truly know that time heals. And you will be healed. Maybe not completely but enough to enjoy life again. That is my hope for you xx

User
Posted 25 Sep 2020 at 21:54

Dear Gilly

I can’t say ‘I know how you feel’ but my heart breaks for you, you family, and my own family.

my dad had end stage advanced stage prostate cancer and it’s really heartbreaking and shocking to see someone so fit, hardly able to walk...how can this be in 10 weeks?

I know we are all a product of nature and part of life’s cycle but it does not really help when it hurts so much?!

Sorry I am no help but only I feel some of this cancer pain that takes our loved ones earlier than should be - I am not spiritual or religious but I hope/think there is a different level after life and you will be meet your loved ones again in a different format....

take care 

xx

 

User
Posted 18 Oct 2020 at 21:24
Gilly, don't wait for or expect to 'get back to normal' - as time goes on, you will find a new normal but you might not realise it because you are hoping for something to look and feel like it did before.

I think that it sounds like you are doing amazingly well and, having met Janet, I can tell you that she is one of the kindest, most resilient souls.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Nov 2020 at 16:46

Hi Gillyflower 

Have been thinking of you and wondering how you are doing? Very conscious of the difficulty for you during lockdown and I hope you are managing to get through every day. I'll be where you are one day and its frightening. I hope you have support and people around you that you can talk to. I went through it with my mother when my Dad passed away suddenly and eventually will go through it myself. I wish there was a group like this for partners of people with cancer. I havent found one yet. 

I just wanted to say hello, I hope you are coping ok...that's about all one can expect for the first year at least I'd say.

Oh just found your post below...you are a fighter! And I'm so glad you have your family around you and a grandchild...how lovely. Let's hope people get to be with family for christmas after the lockdown. 

Hugs

Misty xx 

Edited by member 20 Nov 2020 at 16:49  | Reason: Not specified

User
Posted 21 Nov 2020 at 17:32

Hi Misty, there is a group I have joined on Facebook called Uk Women Affected By Prostate Cancer, all the ladies are very supportive.

 

best wishes

 

Sheila

 

User
Posted 01 Jun 2021 at 17:47

Thanks Misty. I hope you two have many years left together. We didn't quite make the 49 - 6 weeks short but we were together 5 years before we got married so I guess we did over the 50 really. How amazing.I have had a pottering about day today, the sort my Mum used to have. A little walk, chat to a couple of ponies and fiddling about in the garden. The birds and one crazy squirrel keep me entertained. Living near fields and woods we get a lot of pigeons,crows and jackdaws.

G did well on arberatitone and steroids for about two years and I wish he could have carried on with it a bit longer but it stopped working. G's cancer wasn't the aggressive kind initially but it went crazy for no apparent reason.His kidneys were failing and nothing could be done. I am thankful for all that we did do even when he was ill and he is tucked in my heart forever ♥

 

User
Posted 07 Jun 2020 at 16:07

Gillyflower

I can't offer any practical advice but sending love and hugs. Take care.

Thanks Chris

User
Posted 07 Jun 2020 at 22:30

You are so strong. It is great to hear of your motor home trips. I love a road trip - favourite holidays and lovely to hear despite all you have had to deal with, life can still be great. You are inspirational and I look forward to hearing of your next trip when restrictions lift . 

Clare

User
Posted 08 Jun 2020 at 01:23

Thanks gilly. I'm just two years into this, diagnosed G9 and psa 25. I'm presently coming off hormone therapy after RT. I find posts from long term survivors helpful, some are good news and some not so good. We don't know our futures but I feel a little better prepared by having insights from the people ahead of me. 

Dave

User
Posted 08 Jun 2020 at 23:04

Sadly we did decide to sell our motorhome as this year we realised it wouldn't be possible to use it at all, partly due to the lack of my oh's physical strength but also because of the coronavirus restrictions? 

If we are able to take a holiday again, we will rent a cottage somewhere. I love roadtrips and it was an adventure. We stayed on some fabulous sites usually a bit off the beaten track. The best was on a dairy farm with Jersey cows, baby rabbits and a fabulous dog. Going out of season meant quieter sites and more space to wander.

Next steps are more bone and ct scans and fingers crossed that strength returns - hard to bounce back as well in your seventies but staying positive. Thank you for your comments.

User
Posted 08 Jun 2020 at 23:28

Hi Gilly,

You and your oh have certainly had an uphill struggle this year.  Such a shame about your motor home having to go but it’s lovely to hear that you’ve had some great trips and super memories to look back on.  That’s what life is all about, sharing and having good times together.  I sincerely hope your oh regains his strength and appetite so you can enjoy more precious times.

Good luck with the upcoming bone and ct scans. We will be keeping our fingers crossed for good results and thinking of you both.

Angexx

User
Posted 01 Jul 2020 at 22:56

I am so sorry to hear how your oh has been struggling.  I hope that when the course of antibiotics are completed his appetite will improve again and you’ll have more good days and nights and less of the bad ones. 

Thinking of you both.

Angexx 

User
Posted 01 Jul 2020 at 23:43

Fingers crossed for a good night and a better day when the antibiotics kick in. Definitely right to ask for support. You read wonderful things about support given by MacMillan Nurses so I am sure this is a good move.

Sorry I have no practical experience to offer but feeling your positivity shine through such difficult times and hopefully you are remembering all your wonderful trips together.

Thinking of you both Gilly

User
Posted 02 Jul 2020 at 12:45

Thinking of you both Gillyflower. Hoping that the coming days will bring an improvement and you can think of that nice stay in a cottage soon.

Phil

User
Posted 06 Jul 2020 at 23:41
Thank you everybody - ct and bone scans tomorrow - fingers crossed. Sleep well all.
User
Posted 07 Jul 2020 at 23:34

We are expecting the oncologist to ring for telephone consultation on Monday.

My oh is determined to do all he can to gain strength and get better. thank you for your kindness and concern.

User
Posted 14 Jul 2020 at 05:48
Such sad news. So sorry :-((
User
Posted 14 Jul 2020 at 07:07

I am so sad and sorry to read this, virtual hugs and love to you both.

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 14 Jul 2020 at 07:48

I am so sorry to hear your news.  hopefully the RT will help. 

 

barbara xx

User
Posted 14 Jul 2020 at 11:33

I am so sad hearing your news Gilly and hope the RT will help to ease the thigh bone pain.  Sincerely hope you have many more months and happy times together.

Sending you both lots of love.

Ange xx

User
Posted 14 Jul 2020 at 12:05

I am so sorry and sad to read your update. Sending love and hugs to you both.

 

Ido4

User
Posted 15 Jul 2020 at 07:48
So sorry to read this Gilly. Keep enjoying each otherโ€™s company. life has dealt you a terrible hand here for sure..

Sending a big hug

Clare

User
Posted 16 Jul 2020 at 22:55

Sending you both big hugs and lots of love Gilly. ๐Ÿ˜˜ xx

Debbie xxx
User
Posted 19 Jul 2020 at 17:32
Really sorry to hear this. All so very sad for everyone. I hope you can treasure each last waking moment. Apparently itโ€™s good to talk if you can even when he seems asleep , or have some calming music on. Hearing is the last sense to go !
User
Posted 19 Jul 2020 at 18:29

Gillyflower

Love and hugs.

Chris

User
Posted 19 Jul 2020 at 19:49
Oh Gillyflower, wishing you peaceful days with moments of love and comfort x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2020 at 22:29

Such a sad time for you all Gilly, my heart goes out to you and I hope you have much more precious time together.

With lots of love to you all.

Ange xx

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 ๐Ÿ˜˜

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 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 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
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 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 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 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.

User
Posted 09 Aug 2020 at 16:15

Hi Gilly,

Music, walking and gardening. ....a pond and birds.. 

He will always be with you and your family..

Take care x

Gordon 

 

 

 

User
Posted 09 Aug 2020 at 16:46

I am really sad to read your precious G has passed Gilly.  You have shown great strength posting your journey and your positivity and love has shone through during your tough times.

Sending much love to you and your family.

Ange x

User
Posted 09 Aug 2020 at 19:16

Just so sorry to hear your sad news. It only seems a few days ago that you took him to his seaside place and made special memories. Take care of yourself Gilly and I hope in time that you can enjoy and live your best life with the rest of your family. As others have said G will always be with you .

 

Ann

User
Posted 10 Aug 2020 at 03:43

Gilly, I'm so sorry to hear your sad news.

I hope the love from family & friends and also friends here in this community will help you through this sad time. 

He will always be with you, in your heart and in the memories of the wonderful times you spent together.

Steve x

User
Posted 10 Aug 2020 at 08:17

So sorry for your loss Gilly. It's been heartbreaking reading your thread.

I hope you can stay strong 

All the very best

User
Posted 10 Aug 2020 at 08:29

I am so sorry for your loss Gillyflower. I know I will follow the same journey one day X

User
Posted 10 Aug 2020 at 11:51

I'm really sorry to hear of your loss....I've only followed the last few weeks of this thread, but I really feel for what you've been through. I hope I can be as strong when the time comes for me.

User
Posted 13 Aug 2020 at 07:04

Children accept things in a different way don't they? My little granddaughter will miss him and she will only remember his kindness and patience, as he never let her see the pain.

I have kept busy but there is that overwhelming loneliness that creeps in sometimes and the knowledge that nothing is ever going to be the same again. I just wish I could rewind and fall in love with him all over again. 

I will continue to support the charity in the hope that one day there will be something that can treat the cancer without the heartbreaking side effects that afflict some.

Keep fighting all you guys on here and never stop telling your loved ones how much they mean to you.  You are all special  and it is love that gets us through the dark times. That never dies.

 

User
Posted 13 Aug 2020 at 18:32

You are a very special lady Gilly. I know it's a cliché that time heals. You will always miss your darling G of course but your pain will lessen as time goes by until you can meet again.

Ann x

User
Posted 14 Aug 2020 at 22:01
Oh Gilly

I am so sorry to read your news on my return from a break. You and G were inspirational in your โ€˜ togethernessโ€™ and you must be in a sort of shock with everything happening so quickly.

Please accept my condolences Gilly

:(

Xx

User
Posted 28 Aug 2020 at 16:57

Dear Gillyflower, 

Lyn is so right in that you will never get things back as they were but you will find a new normal eventually. It's so different, but in a way the same, for us all if that makes sense? A new normal, finding purpose in your life, however you see it, in time it happens and I hated people saying time would help, but eventually it did.

It's more than ten years for me now and I still pop in here most days. I've not a great deal to say here, but I do like to keep up with people here. I do volunteer with Prostate Cancer UK and I feel that using the knowledge I wish I hadn't had to gain makes a little bit of sense of losing Mike. For some it is better to move away, but I found such support and lovely people, not to mention good friends, on this forum that it has become part of who I am now, and that's a good feeling. 

Getting through each day is good, and all you can expect at this stage. I think I tried too hard to get through them and coped much better when I just decided to let it be. Suddenly one day I found I smiled when the sun shone instead of forcing smiles to make other people feel better. Other people seemed to want me to cope when really I felt I wasn't coping. I forced a smile one day to a neighbour and she patted me on the shoulder and said she was glad I was better, as though I'd had a bad cold! That's when I realised that some of the newer people in my life, and people on this forum, did understand more than people I had maybe known much longer. 

Star crossed talks about reinventing yourself and I get that totally. In time I almost completely reinvented myself to suit the life I could live, rather than the life I had previously lived. Mostly it's okay, even good, but I would never want to forget my past life, it's just somehow the two can run side by side. Memories become easier and kinder. Learning to cope becomes less of a challenge. Asking for help was always difficult for me, and probably still is, but people do want to help and if they can make life easier for you, please let them.

I understand your thoughts on feeling robbed of your time with your dear G at the end. Anger is the stage of grief I found most difficult to accept. I understood the other stages and expected them, but I felt I should have been able to deal with the anger. Images of the last few days take their toll on you. And in similar circumstances to G's Mike's journey came to a quicker end than we had expected. In time I was grateful he hadn't suffered more for a longer time, but at the time it was a shock and I felt he was cheated.

You are so right, now it is enough to get through each day. Try to be as kind to yourself as you would be to others. And do keep popping in here, especially if it helps you, but do know that you have helped, and will continue to help, so many others with your posts.

Take care, love Janet, x

 

 

 

 

User
Posted 10 Sep 2020 at 11:10

Take care Gilly, hope you are having a better day today.

Ido4

User
Posted 11 Sep 2020 at 00:26
thanks Ido4

Today has been a bit better. A friend came for coffee and she is having her own tribulations so it made me think outside my own feelings for a while.

Feeling more energised, I then launched into tidying up one small section of the garden and planted my rose for G- a present from a neighbour. Once again I can see the path instead of the overgrown patch it was before and that made me feel better. Then a surprise visit from my daughter made me happy for a while.

It is a continuing roller coaster ride and I feel as if my doing the garden is also doing it for G because he loved it too.

I am coping and will do but it is early days and I know there will be rough and smooth days. Thank you for caring.

I hope all of you have a good day tomorrow.

User
Posted 19 Sep 2020 at 18:20

Apologies for my late response, Gillyflower.

I do think it is only time that helps you recognise the hole that is grief and skirt around it rather than falling in. I, too, lost my mum, dad and brother before Mike and as you say all in different ways for me too. I still torture myself as to whether it was better to lose my dad quickly to a heart attack, although he was only 53, or at an older age, and expected, like my mother from cancer. Not that there is anything I can do about either. But I do think our minds have ways of helping us cope in times of deep grief and seem to drip-feed only as much as we can cope with on a daily basis. And don't underestimate tiredness - it took me a long time to realise how I always felt worse when I was tired.

There's really no answers to the 'what might have been' questions we torture ourselves with. I believe we do whatever we do for the best and then wonder how differently we could have done it. In time these thoughts got less for me although I still find I need to occasionally tell myself I did the best I could with the knowledge I had.

I can completely understand your thoughts on what might have been without Covid. I obviously didn't have that to contend with, but several new drugs came out shortly after Mike died and I was forever trying to work out whether I thought if they had been out a year or two earlier they would have made a difference. 

And I agree some days it can be so hard to carry on. Fortunately as time goes by I found that these days came a little less frequently until they became rare.

But it's all the things that make you realise how everything has changed for you, yet life goes on for those around you isn't it? Even for the rest of the family I found they could go back to their own homes and life went on whereas I struggled to go home alone as it brought all the memories back. I have found a very different, and busy life, and it is all so much easier now, but it was a struggle to get there.

We all find our own ways, but I found if I did different things and went to different places then I coped better than doing the same things with the same people as then Mike was always missing. Although doing new things made me wonder what he would have thought, whether he would approve of what I was doing and where I was going. 

I hope you are still finding it makes you feel better to get on with your garden. I have always found to get out in the garden and make improvements, however small, is helpful. And how nice you got a surprise visit from your daughter - always a treat to get a surprise visit, and can totally lift you.

You're right in that listening to a friend's tribulations can take your mind off of your own sadness for a while, but please be careful - it is so easy to feel overwhelmed. Remember to take care of you.

Hoping you have a nice sunny weekend and can get outside - it's always so nice at this time of year to get warmer, sunnier days when we don't expect them.

Take care, Janet, x

User
Posted 19 Sep 2020 at 20:29

Thank you Janet. Your words mean so much

to me and all that you say is true. I plucked up the courage to accept invitations for a socially distanced cuppa in different gardens and I was ok when out, though found being with two couples hard, and felt desolate when I got home

 

Yesterday was our 49th wedding anniversary which I had hoped we would reach.  I went out to a garden centre for a coffee and I enjoyed that, but on getting home, I decided to reread the sympathy cards and became totally overwhelmed with the grief I feel. I cried for most of the day and miss G more than ever.

We were such a team and just sitting watching tv with him was a pleasure. Now the house is so empty and  I find I can be ok with people and appear as if am doing fine but once alone again I am trying to stop the "what ifs" and the "if onlys".

I know it will pass over time but it is as if the grief is overwhelming at times

 

 

I realised that G has been clearing his drawers of certain things over the last few weeks probably to help me but it feels so sad that he knew he didn't have long. Looking back on my diaries I can see the decline over the period since April but we got on with each new situation together. When he came home from hospital ,the last time,  I had to relinquish some of his care to the district nurses and I realised that I felt less involved and that was hard.

 Maybe there are new skills to learn and new places to discover when I have the courage to do more.

Time to put myself in the driving seat again in every sense.

This is such a difficult journey and it has only been 6 weeks but feels longer

Thanks for your help and encouragement. I will survive!

Gilly.

Edited by member 19 Sep 2020 at 21:10  | Reason: Not specified

User
Posted 19 Sep 2020 at 21:22

Special thoughts on your 49th Wedding Anniversary ♥๏ธ

User
Posted 20 Sep 2020 at 09:32

Fabulous donation there Gilly flower. 

Have followed your story, not commenting as I did not know what to say. 

My husband is one year into this, diagnosed at an advanced stage  but  hopefully here for a while to come.

You posts are reminders to me, and others no doubt, that everyday is precious. 

I wish you well. 

Love Mrs MAS x

Mrs MAS

User
Posted 21 Sep 2020 at 08:47

Wishing you many years if happiness together. Cherish the little moments, they are as important as the big ones  xx

User
Posted 25 Sep 2020 at 22:10

Gilly, so sorry for your situation. Look after yourself, be kind to yourself, you have been through so much. 

Ido4

User
Posted 25 Sep 2020 at 23:19

Dear Gilly, I am so sorry you are having to endure such heartache.  You are showing great strength doing as you are and your precious G will always be there with you.  I hope you can feel the love of those who are very special to you and to who you are very special, like your Granddaughter, although a different kind of love, and hope this helps to bring you great comfort.  

Thinking of you,

Angexx

User
Posted 27 Sep 2020 at 11:49
Dear Gillyflower, I have no words that will make it all better, but I do remember so many similar challenges in the early days of my own journey.

A weekend on a road trip by yourself - I had to do that as I had to go on several business trips straight after Mike died. Somehow often whilst I was away it was a little easier, but the coming home was hard. And I am embarrassed to remember how I often opened up to strangers on trains when they asked where I was going. Somehow it was easier to talk to strangers than those close to me.

All you say about trying to get on with life but really struggling at times brings back my own memories. I understand your emptiness and how what was previously enough isn't any more. It sounds similar and I was completely happy to be anywhere, or nowhere, with Mike - his company was enough. I am smiling now as sometimes he would be working in the garden or house on a Sunday and announce he was going to walk down the canal to Tesco to buy an apple and would I like to join him. I did readily!

You say you don't know if life will ever feel OK again? I used to feel that way, and I struggled to feel okay. Then I decided to just sit with my grief and let it be. Eventually that seemed to be the way that worked for me, I think it allowed my grief to take its own course rather than trying to force it, but we are all so different and need to do what feels most right for us. Of course, nothing feels right so I learned to call it 'the most right it can be just now'.

Take care, Janet, xx

User
Posted 27 Sep 2020 at 12:31

Thanks Janet

I arrived safely, the sun has been out all the time and I did two of our usual long walks. I have seen a lot of old friends and had a fish and chip supper with our old friend to round yesterday off. I will go home tonight feeling tired but a little refreshed too.

Nothing prepares you for that lunch in a cafe by yourself while people chatter around you but I did it.

Your words are wise and I would love to have G here with me but I know that is something I will have to live with and accept.

I have done better than I thought I would, so can face doing it again but it will have to be on a "strong" day.

From our circle, so many have died in the last ten years, it makes the rest of us more keen to stay in touch.  There are so many widows but the men must miss their old friends very much too. We try to keep the memories alive.

I will carry on and as you say take each day as it comes.

Take care - let's hope we don't all get locked down again. X

User
Posted 27 Sep 2020 at 13:14

Gillyflower

Your own advice is so right, let out all the pain and sorrow. Love and hugs.

Chris

User
Posted 21 Oct 2020 at 15:55

Thank you. I am glad you have a lovely wife to help you through everything. I hope you have many years together.

User
Posted 29 Oct 2020 at 23:41
Yes I sorted the insurance etc early on when I was on autopilot and getting on with paperwork.

The dog I had in mind has gone to another home so I hope she will be happy there - there will be another when the time is right.

I will think about fostering - lots to think about.

My son came over today and it was so good to have some company for a while. He likes a snooze on my sofa!!

I hope it is a bit less windy tomorrow - the leaves are falling thick and fast off the oak tree oppposite the house and swirling around in the drive. Bin day seems to come round quicker and quicker each week. That reminds me it is another week on my own.

Have a good week - won't it be nice when we can see friends properly again? I can't see an end to the restrictions here for ages.

User
Posted 08 Nov 2020 at 07:33

thinking of you and hope you soon get your grandaughter over for a sleepover.

 

barbara xxxx

Edited by member 08 Nov 2020 at 07:35  | Reason: Not specified

User
Posted 15 Dec 2020 at 23:33

Dear Gillyflower, it’s certainly been a difficult time for you and reading your post I feel your pain and sorrow.  You have been amazing with how you have coped with the loss of your precious G. There would never be a right time for your loss but this year must be one of the worst times imaginable.  

I truly hope that you can enjoy being with your family over Christmas safely and feel their love for you.  I hope 2021 will be easier on you and that you will be able to spend much more time out and about seeing all your lovely family and friends and feel the warmth of their hugs.

Thinking of you and thanking you for reaching out to me when I was so anxious, even though you were experiencing so much worry yourself at that time.

Love and very best wishes to you.

Angexx 

User
Posted 01 Jun 2021 at 00:42

Really good to hear from you Gilly. I'm glad Covid is receding and you can get out and see family. Best wishes. 

Dave

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User
Posted 07 Jun 2020 at 16:07

Gillyflower

I can't offer any practical advice but sending love and hugs. Take care.

Thanks Chris

User
Posted 07 Jun 2020 at 16:10
As above. Love and hugs. Five years down the road now post surgery and incurable. Itโ€™s a mental torture that never goes away. I so hope things improve enough for you both that you get some real quality time together again. Donโ€™t waste a second of it. Hugs x
User
Posted 07 Jun 2020 at 19:18

My heart goes out to you both. We are just starting out on the journey with a newly diagnosed cancer. Today we are drained and shattered beyond the hardest shifts we’ve ever worked.....we told our family. Healing thoughts to you ๐ŸŒน

User
Posted 07 Jun 2020 at 21:16

Good luck - I hope all goes well for you. We have had 9 years we didn't think we would have and many men have good outcomes and live long and happy lives despite the cancer. It is a cancer you can live with. Last year and the year before we did a long motorhome trip and had a wonderful time so we haven't let things stop us having fun and we are still staying as positive as we can.

User
Posted 07 Jun 2020 at 22:30

You are so strong. It is great to hear of your motor home trips. I love a road trip - favourite holidays and lovely to hear despite all you have had to deal with, life can still be great. You are inspirational and I look forward to hearing of your next trip when restrictions lift . 

Clare

User
Posted 08 Jun 2020 at 01:23

Thanks gilly. I'm just two years into this, diagnosed G9 and psa 25. I'm presently coming off hormone therapy after RT. I find posts from long term survivors helpful, some are good news and some not so good. We don't know our futures but I feel a little better prepared by having insights from the people ahead of me. 

Dave

User
Posted 08 Jun 2020 at 23:04

Sadly we did decide to sell our motorhome as this year we realised it wouldn't be possible to use it at all, partly due to the lack of my oh's physical strength but also because of the coronavirus restrictions? 

If we are able to take a holiday again, we will rent a cottage somewhere. I love roadtrips and it was an adventure. We stayed on some fabulous sites usually a bit off the beaten track. The best was on a dairy farm with Jersey cows, baby rabbits and a fabulous dog. Going out of season meant quieter sites and more space to wander.

Next steps are more bone and ct scans and fingers crossed that strength returns - hard to bounce back as well in your seventies but staying positive. Thank you for your comments.

User
Posted 08 Jun 2020 at 23:28

Hi Gilly,

You and your oh have certainly had an uphill struggle this year.  Such a shame about your motor home having to go but it’s lovely to hear that you’ve had some great trips and super memories to look back on.  That’s what life is all about, sharing and having good times together.  I sincerely hope your oh regains his strength and appetite so you can enjoy more precious times.

Good luck with the upcoming bone and ct scans. We will be keeping our fingers crossed for good results and thinking of you both.

Angexx

User
Posted 09 Jun 2020 at 00:14

Oh Gilly

so pleased you did your motor home trips and made fantastic memories. Sounds a great plan to rent a cottage somewhere when lockdown allows.

Jersey is lovely isn’t it. Good luck with the scans. Thank you for sharing as it means such a lot for people to prepare themselves and get their ‘road trips’ or whatever they enjoy best booked.

fingers crossed for you

Clare

 

User
Posted 09 Jun 2020 at 00:53

Do all those things you promise yourself you will do "one day" or "when I retire". Take chances and don't be afraid to try something new. We bought the motorhome on a whim because we they stopped the ferries to Denmark and we needed to see our friends there and we don't fly. It is great to be self sufficient and to explore. 

User
Posted 13 Jun 2020 at 00:31

Your thread is really inspirational with your positive outlook and reminder to live life. 

Was thinking about you this evening. 

User
Posted 13 Jun 2020 at 21:40

Thank you. I am happy to report that there is an improvement in appetite with a return to regular small meals. Very shaky day yesterday but bit better today plus family visited at a safe distance which pleased us both. We keep plodding on with each wobble met with a "oops a daisy "๐Ÿ˜‚

User
Posted 13 Jun 2020 at 23:37

That’s good to hear re appetite plus family visits. We are desperate for normal time to be spent with our grown up children as they are just the best company. Lovely you have had a visit. 

Hopefully regular food and that morale boost will lead to  a bounce back and a few less wobbles. 

Good luck with the scans you have coming 

 

Clare

User
Posted 01 Jul 2020 at 21:40

The struggle goes on -  another infection, pain and terrible fatigue. We haven't given up but I have asked if we can be referred to a Macmillan nurse so that we can get some answers and perhaps  more organised approach to the things that are going on.

I am trying hard to persuade him to eat and drink more  but it is hard as the antibiotics affect him but he had to have them.

We have had some really bad days and nights but tomorrow is another day and together we will try to go forwards again.๐Ÿ’•

User
Posted 01 Jul 2020 at 22:56

I am so sorry to hear how your oh has been struggling.  I hope that when the course of antibiotics are completed his appetite will improve again and you’ll have more good days and nights and less of the bad ones. 

Thinking of you both.

Angexx 

User
Posted 01 Jul 2020 at 23:43

Fingers crossed for a good night and a better day when the antibiotics kick in. Definitely right to ask for support. You read wonderful things about support given by MacMillan Nurses so I am sure this is a good move.

Sorry I have no practical experience to offer but feeling your positivity shine through such difficult times and hopefully you are remembering all your wonderful trips together.

Thinking of you both Gilly

User
Posted 02 Jul 2020 at 00:02
Gilly, don't forget to take care of yourself; eat well, rest as best as you can take a little time for yourself if the opportunity arises, even just a short walk. Someone has to care for the carer x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jul 2020 at 08:49

Thank you. I do try to look after myself because I know that I have to stay well to look after him. The garden is my bolt hole and watching our funny feathered friends who keep me entertained.

User
Posted 02 Jul 2020 at 12:45

Thinking of you both Gillyflower. Hoping that the coming days will bring an improvement and you can think of that nice stay in a cottage soon.

Phil

User
Posted 03 Jul 2020 at 13:22

Originally Posted by: Online Community Member

We are trying hard ( we call ourselves a team) to overcome these problems with a cocktail of drugs to combat nausea and infection and every day is a huge challenge but he is a fighter and having overcome so much, we hope he can get past this to have a bit longer to try and enjoy life again.

I don't expect comments, I just wanted to say that you can fight this horrible cancer but it isn't easy and to the outside world you might seem to be doing ok but nobody can fully know how much energy it takes just to keep ahead of the cancer.

A nice use of words.  You appear a great support that must have helped him to be a fighter.
All the best.  Peter

User
Posted 06 Jul 2020 at 23:41
Thank you everybody - ct and bone scans tomorrow - fingers crossed. Sleep well all.
User
Posted 07 Jul 2020 at 09:53

Wishing you luck for today's scans.

 

Mrs MAS

User
Posted 07 Jul 2020 at 10:35

Thinking of you both, and hope all goes well today.

Angexx

User
Posted 07 Jul 2020 at 14:46
I hope all goes ok today and yes please look after yourself. The stress is endless. I have Bone and full CT on 27th July. They will be my sixth of each so probably causing a fair bit of damage in themselves!! Quite scared of what progress they find. Best wishes
User
Posted 07 Jul 2020 at 20:27

Good luck for your scan day. Despite trepidation we managed to get through the day with  no hitches. My oh hadn't been in a car for 4 months but he was OK while I drove.The worst was spending 4 hours in a mask. We were not used to being in a small room with 4/5 others and it was hard to feel totally safe tho everyone was helpful and we used sanitiser often.

Just results to face now. Hoping all will be OK. 

To everyone facing scans Good Luck. We think today's were the 8th. 

User
Posted 07 Jul 2020 at 23:17
Fingers crossed for you Gilly - did they indicate how long you might have to wait for the results? xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2020 at 23:34

We are expecting the oncologist to ring for telephone consultation on Monday.

My oh is determined to do all he can to gain strength and get better. thank you for your kindness and concern.

User
Posted 08 Jul 2020 at 16:13

Fingers crossed for you both Gllly. Waiting for results is just not fun so hope you are OK.

i recommend a trip to the hairdresser. Went yesterday and gosh how much better you feel afterwards! 

( I know shallow!) Have a good week

Clare

User
Posted 08 Jul 2020 at 17:53

Thanks for the advice - I am going on Friday as they had a cancellation - I look like a wild woman and far greyer than before lockdown but am not going to have it coloured this time.

 

 

 

User
Posted 13 Jul 2020 at 23:31

Devastating news today following results of the scans - there has been a huge increase in psa and spread of cancer.

We are trying to process the whole thing, we have no more options apart from a blast of radiotherapy to a thigh bone. Then it will be palliative care for the remaining months . There was so much we still wanted to do and had hoped for longer but like dear Bazza, we approach the coming weeks with sorrow and aim to make every single day count. Thank God for Love.

Edited by member 14 Jul 2020 at 22:26  | Reason: Not specified

User
Posted 13 Jul 2020 at 23:44

I am so sorry to hear your news. I hope that you both find the strength and resilience to make good days even though you will be worried. I hope the radio treatment goes well and helps. Keep loving one another xx

 

 

 

 

User
Posted 14 Jul 2020 at 05:48
Such sad news. So sorry :-((
User
Posted 14 Jul 2020 at 07:07

I am so sad and sorry to read this, virtual hugs and love to you both.

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 14 Jul 2020 at 07:48

I am so sorry to hear your news.  hopefully the RT will help. 

 

barbara xx

User
Posted 14 Jul 2020 at 11:33

I am so sad hearing your news Gilly and hope the RT will help to ease the thigh bone pain.  Sincerely hope you have many more months and happy times together.

Sending you both lots of love.

Ange xx

User
Posted 14 Jul 2020 at 12:05

I am so sorry and sad to read your update. Sending love and hugs to you both.

 

Ido4

User
Posted 14 Jul 2020 at 14:23
Sorry to hear this. Thoughts are with you.

X

User
Posted 14 Jul 2020 at 18:14
Sorry for the news today Gilly. But your last sentence is so true. Thank God for love. X

Mrs MAS

User
Posted 14 Jul 2020 at 20:44

So sorry to hear your latest update. Thinking of you both.

Thanks Chris

User
Posted 14 Jul 2020 at 22:34

Thank you all fir your kind words. A Macmillan nurse came today and already we have a cosy hospital bed downstairs in our back room and various aids. A wheelchair will be here by end week.

We cry often but we are enjoying each others company still. Medicines were sorted out too and a dear neighbour fetched the prescription. We are blessed with a wonderful son and daughter who are supporting us well while dealing with their own feelings too.

User
Posted 15 Jul 2020 at 00:05

Originally Posted by: Online Community Member

Thank you all fir your kind words. A Macmillan nurse came today and already we have a cosy hospital bed downstairs in our back room and various aids. A wheelchair will be here by end week.

We cry often but we are enjoying each others company still. Medicines were sorted out too and a dear neighbour fetched the prescription. We are blessed with a wonderful son and daughter who are supporting us well while dealing with their own feelings too.

Your posts are inspirational and despite the most difficult times you are facing your love and kindness shine through. So sorry to read this latest news, I wish you both the very best and you continue to keep sharing love and laughter xx 

User
Posted 15 Jul 2020 at 07:48
So sorry to read this Gilly. Keep enjoying each otherโ€™s company. life has dealt you a terrible hand here for sure..

Sending a big hug

Clare

User
Posted 16 Jul 2020 at 22:55

Sending you both big hugs and lots of love Gilly. ๐Ÿ˜˜ xx

Debbie xxx
User
Posted 16 Jul 2020 at 23:35

After an emotional meeting with our lovely oncologist it was first decided to have one shot of radiotherapy but that has now been stopped as his bad leg us almost as strong as the other. As his psa is now 3000 there is no way he can recover and too weak for further treatment but our children are really supportive and helpful and help us to get through the tough times. We don't want to be apart and each day we are just thankful for that precious time.

 

 

 

 

 

 

 

 

 

 

 

 

User
Posted 19 Jul 2020 at 15:43

Each day it gets a little harder. Twenty minutes of talking is enough and he sleeps instantly when tired. My feelings are that we will not have as long as we hoped.

Edited by member 19 Jul 2020 at 15:48  | Reason: Not specified

User
Posted 19 Jul 2020 at 17:32
Really sorry to hear this. All so very sad for everyone. I hope you can treasure each last waking moment. Apparently itโ€™s good to talk if you can even when he seems asleep , or have some calming music on. Hearing is the last sense to go !
User
Posted 19 Jul 2020 at 18:29

Gillyflower

Love and hugs.

Chris

User
Posted 19 Jul 2020 at 19:49
Oh Gillyflower, wishing you peaceful days with moments of love and comfort x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2020 at 22:29

Such a sad time for you all Gilly, my heart goes out to you and I hope you have much more precious time together.

With lots of love to you all.

Ange xx

 
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