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Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Jonathan's final performance

Postby Cathy » Tue Jan 14, 2014 10:41 am

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
Last edited by Cathy on Thu Jan 30, 2014 6:33 pm, edited 2 times in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My hero, lover and best friend gone..

Postby Slewis7313 » Tue Jan 14, 2014 10:52 am

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
X

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My hero, lover and best friend gone..

Postby MSH » Tue Jan 14, 2014 11:01 am

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

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: My hero, lover and best friend gone..

Postby EmmaR » Tue Jan 14, 2014 11:20 am

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

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: My hero, lover and best friend gone..

Postby belgrade » Tue Jan 14, 2014 11:31 am

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

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: My hero, lover and best friend gone..

Postby Bee » Tue Jan 14, 2014 11:44 am

Cathy,
You are so right, devastated doesn't do your pain justice, as you know I am truly sorry. Hour by hour is all I can advise.

Speak soon

Bee xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My hero, lover and best friend gone..

Postby J_T » Tue Jan 14, 2014 12:06 pm

Cathy, my lovely, funny friend, my heart breaks for you. So sad you have lost your beautiful man. RIP Jonathan.

Much love
Jools xxx

Charney22
Posts: 21
Joined: Tue Dec 31, 2013 6:47 pm

Re: My hero, lover and best friend gone..

Postby Charney22 » Tue Jan 14, 2014 1:18 pm

I am so sorry to read about Jonathan , my heart goes out to you
Xxxxxx. Cheryl

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: My hero, lover and best friend gone..

Postby Ant11 » Tue Jan 14, 2014 1:26 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My hero, lover and best friend gone..

Postby nikkis » Tue Jan 14, 2014 4:28 pm

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

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: My hero, lover and best friend gone..

Postby dabber66 » Tue Jan 14, 2014 4:58 pm

Bravely written Cathy, and beautiful as well. Carole x

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: My hero, lover and best friend gone..

Postby Carole McGregor » Tue Jan 14, 2014 6:44 pm

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

Jwilson
Posts: 100
Joined: Sun Jun 09, 2013 9:52 am

Re: My hero, lover and best friend gone..

Postby Jwilson » Tue Jan 14, 2014 7:08 pm

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

Dfarmer
Posts: 32
Joined: Sun Jan 20, 2013 4:53 pm

Re: My hero, lover and best friend gone..

Postby Dfarmer » Tue Jan 14, 2014 7:42 pm

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
X

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My hero, lover and best friend gone..

Postby cestrian » Tue Jan 14, 2014 11:03 pm

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