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Jonathan's final performance


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Hi all,


I cannot describe how sad I am to let you know that my wonderful, kind, funny and talented partner, Jonathan, finally lost his fight against advanced PC last Friday afternoon (10th Jan).


Jonathan was diagnosed 12 Dec 2012 with PC that had advanced to lymph nodes, liver and abdomen. Amazingly he had had few symptoms and looked really well. Folfironox started Feb which he tolerated well (tho hated, mainly due to fatigue and tingling) and he completed his last cycle in June. He was lucky as he was pain free after the 2nd cycle and remained free for some time after. We managed a 2 week holiday in Corfu in July where he swam and enjoyed lots of mythos and wonderful food (he had no weight loss at all until far more recently). I know we were so lucky. As well as Corfu we enjoyed numerous other weekends and odd weeks away - we had a fantastic year and so happy he stayed well enough to enjoy it (despite a couple of wheelchair "incidents").


Come the Autumn tho he had started having some tummy pain and constipation. This coincided with a 3 monthly monitoring CT scan which showed a reduction of the disease. The oncologist was bemused why he was having symptoms with good scans and blood results but arranged some tests and we went home to a bottle of champagne.


Various x-rays and tests were carried out without any indication of the problem, by which time he was also suffering from right shoulder blade pain . We managed a week in Crete but by then he was getting really fed up. After changing meds failed to help we asked for another CT scan which showed that 1 or 2 of the tumours had grown since. However, he was still fit and healthy so started a regime of Gemcap to zap it again.


I now believe that the tumours had started to grow before the early Autumn 3 monthly scan from a lower level and as they still showed a reduction did not come onto the oncologists radar.


Things went pear shaped after 2 cycles of Gemcap. He developed a painful and cold leg which, as he'd previously been on clexane we suspected a clot. However, it took a couple of examinations before a clot on an artery was suspected and an immediate operation was needed (to save his leg). This stopped chemo and alarm bells started ringing. I have read too many times on this forum where things can start to spiral. Another op was needed a week later to remove some newer clots and he was finally discharged just before Christmas (a Christmas he had never believed he would make at diagnosis over a year earlier). By this time he was starting to look thin (despite creons increasing). The oncologists agreed he should remain off chemo until 13 Jan to allow his leg time to heal.


We had a quiet Christmas. Friends were wonderful taking us and collecting us from a restaurant on Christmas Day (due to him needing crutches). His son stayed over. It was a special Christmas but signs were there that all was not well. I noticed when giving him a blood thinning injection into his tummy that his usual lovely squidgy tummy was a bit taut....


His leg didn't heal. He needed another hospital admission after Christmas to restitch his leg after the wound reopened. Resuming chemo started to look unlikely. He was discharged again on NY eve and was really starting to look thin. I gave him creons and cream with everything!


He celebrated his birthday on the 3rd January quietly at home. On the 4th I was really concerned as he seemed to be getting confused and withdrawn. I managed to get his community palliative care nurse Melanie on the phone on Sunday (she doesn't work weekends but said I could ring) and she visited as soon as she could Monday.


Jonathan agreed that he would go into our local hospice for a few days to give me a rest and to try sort out better pain relief for him and then come home to me and we'd get a hospital bed for him. This was always his wish. Melanie warned me afterwards that she felt a significant corner had been turned and to tell people if they wanted to see him to visit sooner rather than later.


Jonathan was admitted into the hospice last Tuesday.


The hospice staff were absolutely fantastic. He had so much care and so much fuss in terms of trying to find ways of making him more comfortable. On the Tuesday alone he was seen by the doctors 4 times and was wheeled across to the main hospital 3 times on Weds for scans. The doctors told me they felt his confusion was caused by an infection and started antibiotics.


Jonathan's confusion remained but he remained convinced he would be leaving. He texted me at 4am on Weds morning saying he felt more aware and in fact was better for most of Weds telling Melanie he was "getting there" and another friend that he looked worse than he was (then looked at me and asked "don't I?). Thursday morning though he looked much more poorly and a doctor warned that the next 24 hours were crucial and if he didn't respond to the anti biotics that there was only a very few days left. Even though, as I left him that evening he blew me kisses and told me he loved me.


Friday 10 January I arrived and I knew. The doctor said that if anyone wanted to visit to make it that day or the day after so I contacted those who were intending visiting later to come sooner (I was keeping a diary to manage visiting so he wasn't overwhelmed) and his son Jake and his son's Mum and former wife Sally, dropped everything to come. By lunchtime it was clear he had deteriorated again but still replied "yes please" when the nurse asked him if he wanted lunch (such a polite man). I managed to get him to suck a bit of chicken soup through a straw and have a bit of jelly. A friend who had dropped in charged back to my house to pick up a CD player and his son played him some of his own music and then we put on the Beatles. It was clear he would die that afternoon and so we started trying to put off friends who were on the way and all held his hands and had time to tell him how much we loved him. It was very very special. We didn't stop telling him we loved him until we knew he had passed away (and then still did). Some friends who we hadn't managed to put off coming started to turn up and we stayed with Jonathan for as long as we felt we needed or wanted to.


Afterwards we all decamped back to my house and cracked open some champagne (Jonathan would have approved) and more friends turned up and someone made an executive decision to order pizza. It was all so organic and unplanned Jonathan would definitely have approved and me, Jake and Sally felt that the whole thing really had been perfect. Serendipitous really.


So, that's it. He has gone. I know that many of you reading this will know how I feel.. Devastated doesn't seem to do it justice. Our lives now have a big Jonathan shaped hole in them. We are thankful that the end was so quick and that he had only a short time where he was confused and not himself and that he died in a good place surrounded by the people who loved him the most. He was a brave strong man who faced up to his impending death by making preparations for his funeral including making a cd with Jake for the service. We never missed an opportunity to tell each other we loved each other (our notes and cards are still all over the house).


I am aware this post is very long (so thank you for anyone reading so far) but just wanted a final post script.. Jonathan, as I know some of you know, had been a (very talented) professional actor and musician. That is all he had ever done and he has friends right across the theatrical world (actors, directors etc). Yesterday Jake, Sally and I discussed the possibility of us getting a working party together after the funeral (date not yet set) and to organise a benefit maybe in summer in London as a celebration of Jonathan and with proceeds to go to PCUK.


RIP Jonathan. I miss you so much.


Xxxxxxxxxxxxxx

Edited by Cathy
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Dear Cathy, how sad that Jonathan has lost his battle with this damned thing. You both seem to have been here for such a long time, reporting on different aspects of the fight and always being so upbeat. It is good to hear the end was quick, but will not help the sense of loss you must feel..... It was always very clear just how much you loved each other.


Please take care


Steve

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So sorry to read that Jonathan has lost his struggle with this disease. He seems to have met his troubles with remarkable humour and your post is such a touching tribute.


My condolences.


Mark

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Cathy oh Cathy it's 8 weeks today since my Jon passed away so I know just how overwhelmed with sadness you are feeling you were both so brave and your posts as well as being so helpful would also make me smile (champers and pizza so you two ) so chin up and know your forum family are here for you


Take care sending loads of love and hugs


EmmaR xx

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Hi Cathy,

I read your post with great sadness and am so sorry for your loss. It was 4 months last friday since my husband died, and he too succumbed to an infection, that he was just unable to fight. Take care, and to echo Emma, your forum family is always here for support.

Thinking of you and your family,


Hilary x

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Cathy, This is my very first post on the site, although for the last 6 weeks I have been looking at all your posts along with others. So beautifully written at such a difficult time. I ask myself why oh why do these lovely people have to suffer so much from this dreadful disease. Its all about having to fight to get help, although I am glad at the end the hospice made it as nice as they possibly could. You have a wonderful family of friends on here and I am hoping in time I can bring myself to talk about our story of the special lady in my life.


You are such an inspiration to everyone, just remember Jonathan will always be with every step you take. xxx

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Lovely Cathy,

I am so sorry to hear that you have lost your wonderful Johnathon but am glad to hear that you were there, telling him you loved him at the end. You have been so supportive to me and so many others here, and that has really made a difference . I just wish you could have had a better outcome and more time with your special man.

Lots of love,

Nikki

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Carole McGregor

Oh Cathy. I was thinking about you earlier today and wondering how Jonathan was doing. It's been a wee while since you last posted and I feared the worst. I am so very sorry. I have no wise words, just huge respect for the way in which you both dealt with this awful disease and made the most of your time together.


Much love

Carole

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Cathy. Hats off to you for that post detailing the whole story about yours and Jonathan's fight and journey with PC. You have been a real rock to Jonathan and to all of us in the forum family. As you said you were able to go on holiday and several lovely weekends during the past year. The photos and the memories from these trips will be soooo nice for you to have. Again, as you said his deterioration in the end was rapid....a shock but also a blessing for you all. Who wants another human being to suffer like that. Chin up you can do it

Love June

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Dear Cathy

My thoughts and prayers are with you and your family. Jonathan's story sounds so similar to my mum's at the end where it all happened so fast.

I'm glad you had the time with him at the end. As time passes you will really cherish this and it will stay with you forever.

Rest in peace Jonathan

Dawn

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Dear Cathy


So very sorry to hear of Jonathan's death and thank you for posting such an amazingly comprehensive account of his last days so beautifully and touchingly written.


All our thoughts and prayers are with you and your family to support you at this difficult time and to carry you through the dark days you will surely experience. We are all here for you whenever you need us to listen.


Love and Peace


Mike x

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Cathy,


So sorry to hear your news. I had been following your posts ss my brother in law seemed to be following the same path as Jonathan. I cannot imagine how you must be feeling as I still have my husband but I know how difficult it has been seeing Bob fight his battle and never concede that he may not recover.


Take care, my thoughts are with you and your family

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Dear Cathy

I am so sorry. I have been reading your posts since starting on this forum a few weeks ago. I am going down this route again with my new partner (in his 40s) as my husband died of cancer 25 years ago (in his 30s). I thought I'd be strong second time around but I'm falling apart with all the old memories resurfacing. I'm glad you got so much time together. My partner's was operable but with lymph nodes involved and after starting on gemcitabine before Christmas had to stop after only 2 doses because of an infection and in that short 3 weeks before restarting has developed worrying symptoms of pain and weight loss so I am now thinking that we might not have that long. One thing which I found enormously comforting last time was joining a Cruse group for widows with young children. I wondered if it would not be possible for those of you who have recently lost someone to this awful cancer to get together. We used to arrange meals out etc and it was enormously uplifting, not gloomy. I know that you have to apply to the moderators to do that but I would recommend it if any of you are like-minded. Sending you lots of love in the meantime.

Didge x

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PCUK Nurse Jeni

Cathy,


On behalf of the whole charity, we send you our love and condolences at this sad time.

As many have said, you have been such an amazing support to others on here and always ready to give everyone a laugh.


We are so sorry to hear of your beloved Jonathan's passing so early in the new year. Your bravery is outstanding.


Thinking of you,


Jeni and Everyone at PCUK.

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Hello Cathy

So very very sorry to hear that Jonathan has passed away but so glad he made one last Christmas. Christmas will always now be extra special for us as we lost Terry on Christmas day. I know there will be so many people giving you help and support but the pain does not go away. Terry had his funeral last Thursday and we celebrated in style. The music going in was Move on Up (Curtis Mayfield) and other tamla songs during the service and on leaving we had the Four Tops Loco in Acapuloc. We never made it to Acapuloc but he loved to dance to this song. It is definitely not a sad day and we had a big party afterwards which didn't finish until 11 pm. Lots of champagne drank and not many tears, we even had a DJ so all had a dance to his favourite tunes. I hope some of this will bring a smile to your face as I think Jonathan sounded quite similar in his sense of humour. Thinking of you so much as a found you very supportive when I first joined the forum. lots of love Lyn xx

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Dear Cathy,


I am so sorry to hear about your loss. On January 16 2014 it will be exactly two months since I lost my 39 year old husband to this terrible cancer. I cried when you started talking about him being confused. My Clint did the same thing. It all happened so fast. He was only told in June he had pancreatic cancer and it was a stage 2. He had chemo and was sick and lost all sorts of weight. Then after chemo it was time to do a scan. It had spread to his liver. Doctor told him he had less than a year. He didnt even make it 6 months after being told that. Clint had a case of pancreatitis as well so it didn't help him any. We took our children to the beach with us for a whole week. He was sick the whole trip. Never complained. Not once. I am 30 years old and I am a widow.... I love my Clint and will always love him. I too got to be there when he took his last breath. I wouldn't take all the money in the world if it was offered to me. I wasn't going to leave his side. All I said over and over was I love you and I am so proud of you. The best man ,friend, son, husband,or friend anyone could ever have left and went to be with Jesus in Heaven. The most remarkable thing was his faith. He said I ..LOVE..YOU.. With every breath he took for a whole hour and a half and then it went into I... love...God... He was seeing Gods face. I could see it in his eyes. I'm hurt. I miss him. I miss him more than I could ever describe. I dont understand any of it. I just have to have faith. I have to put all my trust in the Lord. I have two children to raise. Clint will always be in my heart. Just like your husband will always remain in your heart. I am sure right now it hasn't really hit you. You think it has but it hasn't yet. My hardest time is going to bed at night. We would always cuddle for about 10 mins and then always say ok thats it and turn to get comfortable how we really wanted to lay. He was so good to me. I talk to him every day and I count the days until I see him again. If you ever need anyone to talk to please feel free to write. I promise to listen. Clints birthday is next Friday. He would have been 40. Its hard to go through all of the firsts. Hang in there and I pray you know this life is temporary and one day we will be with our husbands again. You are in my thoughts and prayers

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Ahh lovely lady, that's so sad. Amazing post that just has love and determination and all the things I hope my Mum has when her time comes just shining out of it. I hope you and the kids get all the support you need to get the practical things dealt with so you can carry on being such an amazing support for each other.


He must must have been so proud of you all. Not just taking this journey with him, but hopefully you and he knew how much difference you have made, are making for others. You've certainly helped me stackloads when I thought smiling was a vastly tall order (cathrine wheels and quality street!).


If the world goes quiet on you when all the things that have to happen straight away are done (perhaps unlikely with a potential benefit to put energy into) and you're overwhelmed with time to think do come find us.


Lots of love and hugs


Sarah

XXX

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Thank you everyone for your incredibly kind replies. They really mean a lot and I intend to sit down with Sally and Jake to let them read them too.


Today we managed to set the funeral date, 29 January (they're very busy). It feels a long time off.


Coincidentally Roger Lloyd-Pack was someone Jonathan knew - they had a few mutual friends. We are now fearing there might be a battle of the funerals with various actory friends charging across London to get to both venues.. It made me a smile a little imagining the theatricals and the drama.


I haven't posted generally for a little while so to everyone new, and those not so new, keep on keeping on and don't give up hope. Take care with them wheelchairs tho.


Cathy xxx

Edited by Cathy
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Cathy, I am a newbie for posting on the site, as a very dear member of my family recently diagnosed with the worst possible prognosis. I have been following your blog and what an inspirational person you are. I just hope we can do the same when the time comes for us to say goodbye to our special lady. She is fighting but not really accepted the news which makes it hard, however we have to respect how she gets through each day. I cannot imagine how those suffering deal with this sword hanging over their head just waiting for it to fall. This is the most horrendous disease and most people on this site are all let down by doctors and the hospitals. God bless you and your family x

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