My beloved son

[JoeysMom]

Hi Sue & Susan,

Selfish women indeed, Sue! Cannot believe they didn’t notice you were not feeling well. If they’d been more sensitive, they’d have seen your body language too. I do think that questions such as “How are you?” aren’t very useful, though. I got one yesterday from a friend who called and who then said “I know exactly what you’re going through”. I’m not known for my diplomacy: “no you don’t”, I said, “you have no idea what I’m going through! Your children are safe and healthy and happy. My son is dead! You cannot even fathom one inkling of how my world has collapsed.“

When somehow the discussion went to skiing (I’m a very avid downhill skier and high mountain hiker - or I was!!) I said I couldn’t imagine going skiing this year. “Of course you will”, said my friend.” I’m sure by January you’ll be fine. You’ll still miss Joey, of course, but you have to get your life back. He would want you to.”

I do NOT find such comments helpful at all. How about you? Another friend called and her tack was quite different. Hi Annemarie, she said. Just checking in. Then silence, at which point I started crying and she just listened. I told her about my guilt, about missing Joey so much, about the big memorial movie night his friends are organising mid-December - a cinema wil be rented - etc. etc. and she just let me rattle on. That gave me far more strength.

If only someone had done that and spoken to you about James! I found his FB page and he looks like a wonderful man! All those beautiful tributes! I see you’re on FB too. (Me too: Annemarie Barnes - there are probably others with the same name but I should be easy to find) . I saw a picture of you and your 4 lovely sisters. I hope they are able to comfort you. I envy you having sisters. I have just one older brother who also lost a son 2.5 years ago. But it was sudden. Heart attack aged 36. Although Joey was diagnosed with metastatic testicular cancer in June 2021, it wasn’t until this spring that things started getting very bad. I think the fact that my life was so 100% involved in him for those months - every day, all day at the hospital - is now catching up with me physically. To say I’m under the weather bus an understatement. My brother and I gave both lost a child and the end result is the same. He was spared the many months of suffering before. I don’t know if that’s good or bad. He was totally unprepared for the news, whereas we knew it was coming. Both situations are atrocious, unfair and do so unnatural !

And Susan, how lovely about Oliver’s advent Calendar! You must really be so proud. Do you have any examples of his artwork that we can see online?

Seems you are artistic too if you’re writing. What sort of zoom group? I too love to write (I’m an English teacher - well I’ll say former now as I have no intention of working anymore). I started keep a diary of Joey’s cancer journey from the very beginning - medical details, my feelings, his feelings etc. In the Notes app on my iPhone. Then in May, when things really started going south and Joey was admitted to the CHUV, the Lausanne University hospital for high density chemo and an autologous stem cell transplant, I was in such a dither I put my phone on the roof of my car and drive off. Lost forever. Would you believe it? Everything was saved on the cloud EXCEPT the notes! I had some 400 of them, many just lengthy trip reports of my global trips, dozens of lists of places I want to go to, boons I’ve read and want to read etc. You get the picture. Losing all that meant nothing - but the blog I was writing about Joey was gone too. Now I have to rely on my memory (which is definitely not what it used to be) and all the WhatsApp messages & emails to Joey & my friends.

I’m going to write it all down too. All of it. Joey’s cancer journey, the way he chronicled it in video blogs, how interested the Swiss media (radio, TV, newspapers & news magazines) became in his unique way of dealing with his cancer: - with candour and humour that got him
Thousands and thousands of followers on all social media platforms. But I also want to talk about him - such a creative, gifted young man but who had his weaknesses like so many do. And then about the grief, the guilt, the entire package that we are all stuck with in this exclusive club we would gladly cut off our right arm not to belong to - with a blunt, rusty Swiss Army knife.

Quite an epistle this was. Sorry for being so verbose. I’m so glad to have found this Sue Ryder site. Both of you, Sue & Susan, know exactly what I’m going through, as I do with you too.

As for the bracelet. Not found. The guy who supposedly found it was taking me for a ride . Don’t need this. My cold is full blown bronchitis & sinusitis now. Thank God I didn’t have this during Joey’s last weeks or at the funeral. Love xx Annemarie

[Suzie4]

Hi Annemarie, I’m in the car with my daughter so will concentrate on your message properly later when I get home. We’re going to my nieces pub for lunch near Doncaster. The fb you’ve looked at , Sue Rush, is my ex sister in law. We’re friends. Im now Sue Soanes and unfortunately have a very dysfunctional family! I have 3 sisters and had 3 brothers , one died last year at 82, my nieces are more like sisters as they are nearer my age so I’m thankful I have them.
Look forward to reading properly. Than you for reading my sons fb page.
Sue xx

[Suzie4]

Annemarie, I have just got back from my day with my daughter. I read a little of your fb page. It’s very apparent that we have had very different lives and I am in awe of all your talents and qualifications.
It just confirms that this dreadful disease does not discriminate in any way and takes the best. Even the likes of Steve Jobs, the Apple magnet, with all the money he had could not beat it.
My siblings have not been any good to me at all, there is too big an age gap, youngest of 7 and the only one to lose a child. All very different to me . I was the last at home with elderly parents and didn’t get the chance to pursue my interest in nature , got a job in a bank and became a housewife and mother. Loved being a mum .
You’re right, noone can possibly imagine how we feel.
I just want to look at James’s photos but I just don’t feel strong enough yet.
Hope Annemarie and Susan you have had a better day.
Sue x

[JoeysMom]

Nothing to be in awe of at all, Sue. Just a plain old high school English teacher and a few other things. But you are right - the most important thing that connects us is the death of our sons. Grieving mothers we both are. It makes us the same.

I was looking forward to hearing from you actually as I’ve had the worst day. Terrible head & chest cold that won’t go away. And I feel like a damn sissy as this is NOTHING compared to the God awful pain Joey had.

Someone told me one good therapeutic thing to do is to write to one’s deceased child. Dap I did . Wrote a long letter to Joey and it made me feel pretty good and less lonely. Have you tried that?
How was the pub lunch by Doncaster? My sister-in-law hails from Manchester. I see on Google maps that’s quite close!
Love, Annemarie .

[Suzie4]

Hope you feel better soon. I think you are feeling so low mentally you are weak physically. We are both in indescribable pain.
Lunch with my niece us always a joy, she was a very close cousin to James and he stayed with her and husband often as a child. She is a sweetie and has battled breast cancer for the last 18 years. Her and James are the same star sign, Capricorn, very similar characters and the only ones in the family with cancer diagnosis.
I’ve just read how you climbed Kilimanjaro and base camp Everest! Fantastic!! James took me up Grouse Grind in Vancouver. Don’t think he thought I could do it! Went to Whistler too and trampled through the snow.
I took my kids skiing to Austria once, couldn’t afford it again, James was 14 and excelled. I was in my 40s and loved it.
My daughter in law studied Thai and was at Chang Mai University for a year. Janes joined her for 5 months and I visited and did a fortnight’s tour with them both.
Her job in Wales was organising Eastern European students to study English but Brexit and Covid scuppered that then James was diagnosed. The last 3 years has been disastrous just when we parents have got to an age where we can enjoy retirement. That’s gone to the dogs now!! I was thinking today how can I ever be happy again.
When I stepped out of my door this morning a lovely white feather landed on my arm! Its in the memory box now.
I’m very sad Annemarie as only you and others in this club can understand!
Try and get some rest and feel better soon. All this crying affects our nasal passages and sinuses and opens us up to colds and coughs.
I will take your advice and write to my beloved James.
Sue xxxx

[SusanJ1]

Just a brief message from me tonight. I’ve had a busy day and am tired.
I had a lovely surprise - Oliver’s best friend, who lives in New York, turned up on my doorstep this morning. He said he just wanted to say hello and give me a hug. Will tell you more tomorrow.

I’m so sorry you’re feeling poorly, Annemarie. I had Covid during a heatwave in the summer. Covid on top of intense heat on top of unbearable grief - not a good combination. I think you are exhausted from all the stress and sadness. Take lots of fluids and plenty of rest so that your body can shake off the cold virus.

Will write again in the morning. As we all know, very few people know what we’re going through, and so it helps to share with those who do.
Loving thoughts - Susan J

[JoeysMom]

Good morning Sue & Susan!

Miserable night hacking away with a sore throat but at least my sinus headache seems to be gone - for now anyway. Yes. I’m sure it’s just the stress of the past months catching up. Just like theatre nurses who are 7-months pregnant, can be involved in an 8-hour operation and not once have to go to the loo (my Manchester sis-in-law, a nurse, told me) so my body may have unconsciously known not to get sick or I’d have to have stayed away from Joey. Now it is all catching up with me but I feel like a right wuzz when I think of all the horrific pain Joey went through.

When he was hospitalised on and off for lung operations and chemo in the winter of 21/22 Covid restrictions were still in place in our hospitals, so no one could visit him. How grateful we were when he was admitted to the CHUV in Lausanne and this fall in our Neuchâtel hospital that there were no restrictions. And they were terribly understanding, allowing us in all day and sometimes till late in the evening. It would have been even more unbearable for him to be there alone. When he was intubated in the ICU in June they even let me stay as long as I wanted. He hated being in there. He was put into an artificial coma for a week and couldn’t talk for days after he came out of it. But he was awake and wouldn’t let me leave. Hé couldn’t speak because if the masdivecrespiratorvjammed down his throat, had his hands tied down so he couldn’t rip out the tubes from the 16 monitors, yet I’d know he was in distress as tears would roll down his cheeks. I’d stay as long as I could, just holding his hand and rubbing his arms. It was heartbreaking. When I’d ho to the parking garage I’d always have a meltdown. Once his arms were untied and he could speak a little, he’s call me at all hours of the night. Being in such an ICU is frightening. He’d just want me to talk to him. To hear my voice.

How much time did your boys spend in hospital? Were there restrictions?

It must have been horrendous for all the families who had loved ones in hospital during Covid and could never go in.

How nice, Susan, that Oliver’s best friend came to see you! Is he staying long? Will you see him today? What did you do? And please, do tell us more about your Zoom writing class! I imagine you’re writing about Oliver?

So you did the Grouse Grind, Sue…I know it well. A lot of my family live in Vancouver and on the island. Haven’t actually skied at Whistler - only summer time activities. As for Thailand, I lived there for years as a young teenager. My dad worked for an oil company. Just last year i was looking into Airbnb’s in either Thailand or Bali for a family holiday. Now the idea of traveling anywhere is distasteful.

A feather - a lovely sign! I thought I’d got a sign when I heard Joey’s bracelet had been found but no - gone forever.

Still haven’t been out of the house but today I will have to. Joey’s death certificate arrived in the mail yesterday, which I need for various administrative things. Don’t know if I can face it. Might have my husband do it.

Another day of heartache. It’s just unbearable. I could wish myself 9 weeks or 6 months down the road but what good would that do? You are both still overwhelmed by your grief. I know there is no timeline for grief, but when does it get better?

[SusanJ1]

I’ve been thinking about the early weeks after Oliver died. They seem to be a blur. I know there was a huge, heavy feeling of sorrow, there was also shock (even though his death was not unexpected), plus disbelief, and even relief that his suffering was over. There was also a great sense of pride, we had a wonderful service for him, he was so loved, and there was laughter as well as tears. After that, some days I felt numb, sometimes I just cried and cried, sometimes I tried to keep going - one foot in front of the other, exhausted all the time.
Spring turned into summer. I got Covid. My daughter-in-law took the children away for two holidays. I worried about all the family all the time, especially about my younger son who was utterly grief-stricken.
We got through Father’s Day, birthdays, anniversaries, holidays … all sorts of significant dates without Oliver. We got through. And then Autumn arrived, and here we are, trying to get on with our lives, still missing him as we always will.

The three years during which Oliver was so ill were a roller-coaster of dread, fear, relief, thankfulness, hope, joy, despair. He was so brave and positive, there were times when we really thought the worst was over and he would make a full recovery. Then there was the devastating news that nothing more could be done, and we were in despair. But trying to stay brave and strong.

Because of Covid, I was not able to see him so much during those three years, which was difficult. But for the last 3-4 months, I was able to visit him a lot. We told him over and over that we loved him. He stayed at home until the end, and I was there when he died, with his wife beside him. She has been marvellous. He looked so peaceful and beautiful.

During those last months, his best friend came over twice from NY to stay for a few days with him. He was brilliant, he cheered Oliver up and helped all the family. We were so grateful. He came back again for the funeral. It was dreadful to see Oli’s friends, all grown men now, sobbing on that occasion. So it was lovely when this particular friend turned up here unexpectedly yesterday. He didn’t stay long, but he’s over here in England and wanted to say hello to me and give me a hug. More importantly, he’s going to London on Monday to see Oli’s son on his birthday. A true friend.

I am trying to keep myself well physically, so that I can be useful to the family. I don’t want them worrying about me. So I try to eat, to keep occupied, to get fresh air and exercise (I like walking). I have a kind partner, who tries to jolly me along, but that doesn’t work at all. He is not Oliver’s dad, and he can’t possibly understand. My husband died suddenly 17 years ago, and although that was a shock and a sorrow, I had my three children to see me through my bereavement.
Losing a child is a million times worse. Yet I feel I can’t let the others down, so I try to go on.
I do believe that the pain will ease. We will always carry Oliver in our hearts.

I’ll try to send a photo of his artwork sometime.

Well, I think I’ve said enough for now. I hope Annemarie starts to feel better, colds are wretched things and you are allowed to feel sorry for yourself. Especially at this terrible time. If it’s sunny where you are, try to get some vitamin D, it may help.
As you say, another day of heartache. But it will gradually get better, we have to believe that.
Love to you all out there - Susan J

[Suzie4]

I feel exactly the same about arranging any sort of travel. I’m feeling it this morning, can’t see the point of anything, questioning my very existence. I’ve made wrong decisions my whole life to please everyone else but that has certainly come back and bit me in the bum!
Tears are flowing freely this morning. Nearly 10 weeks of complete heartbreak on top of 2.5 years of torture not knowing whether James could survive and in the end he didn’t.
I can’t work out how to attach photos I wanted to send you both one of the Teddy bears Jennys very clever mum made out of 2 of James’s fleeces. She put a pocket at the front of each if them with an embroidered bumble bee because Jess thinks that’s what her Daddy has turned into. Each of my 2 granddaughters has a Teddy. I wear a fleece that belonged to James every day on my dog walk. I feel like he will know I’m wearing it. I knit him an arran jumper which he loved and jenny gave it to me.
He was going to be best man in Montreal in July for his best friend of 27 years. He was so poorly by then his friend came and saw him the week before he got married. It was so heartbreaking, he could hardly stand up and his personality was different. I keep getting flashbacks of him looking so poorly.
Omg I’m a mess this morning girls, will it ever ease?
Sue.x

[JoeysMom]

Dear Susan,

I am bowled over by your message and by the similarities between your son and mine. The only difference is that Joey’s illness progressed faster than Oliver’s. We had only 16 months whereas you had three full years of agony. But some of your comments could have been taken straight out of my diary!

« I’ve been thinking about the early weeks after Oliver died. They seem to be a blur. I know there was a huge, heavy feeling of sorrow, there was also shock (even though his death was not unexpected), plus disbelief, and even relief that his suffering was over. There was also a great sense of pride, we had a wonderful service for him, he was so loved, and there was laughter as well as tears. After that, some days I felt numb, sometimes I just cried and cried, sometimes I tried to keep going - one foot in front of the other, exhausted all the time. »

Yes, I can identify totally with that sense of disbelief! The night after Joey died about 20 of his close friends met at a restaurant in the old town of my city, at one of Joey’s favourite hangouts, and spent the evening talking about their friend. Someone sent me some photos. Something seemed out of place! Where was Joey? I suddenly felt so awful that at midnight I drove to the mortuary next to where his service was to be held (we had a 24-hour lock code) and I sat with him for two hours, just talking to him about what all we’d arranged for his send off, funny anecdotes about his childhood & teen years, about so many other things. His face had been contorted with pain so often during the last months. And after he died his eyes were swollen. But as I sat next to him, where he was stretched out comfortably in his coffin, wearing his Having a Ball hoodie of course, he looked so peaceful. No pain, good colour, even that cheeky crinkly smile he had. I kept expecting him to sit up and say: Hey mom, gotcha! Shall we go home?

« The three years during which Oliver was so ill were a roller-coaster of dread, fear, relief, thankfulness, hope, joy, despair. He was so brave and positive, there were times when we really thought the worst was over and he would make a full recovery. Then there was the devastating news that nothing more could be done, and we were in despair. But trying to stay brave and strong.«

Yes - a rollercoaster is the word I used so very often these past 2 years. Or as we say in French, une montagne russe. A Russian mountain.

Even the visits Oliver had from his best friend and that he came back for the funeral! The similarities are quite eerie.

Joey went to the Met Film School in London from 2007-2010. On the first day there he met a Norwegian fellow with whom he hit it off immediately. They were inseparable those years - even though Joey lived clear on the other side of London, in Deptford, with his girlfriend. After they graduated they didn’t see each other again - 12 years - although not a day went by that they didn’t chat online or talk. They had exactly the same quirky witty sense of humour. It was as if they had their own language.

They’d wanted for quite a while to do a podcast together but life and jobs (Joey was a radio host, filmmaker, translator and voice over artist) got in the way until June 2021. Joey told Andreas about it the very day his diagnosis came in and so they decided to chronicle his cancer journey in a quirky, hilarious, often irreverent podcast with loads and loads of cultural references. They never made fun of cancer though! It became a hit right away, not only with thousands of people around the world, but with the media. One man’s way of coping with cancer by not letting it take over his life, even though he suffered terribly.

Whenever there’s light at the end of the tunnel, he would say, a construction crew will come in to make more tunnel. In early October he was told there was no more light left. At the beginning of his “journey” he’d always said he would go on until the bitter end - an easy thing to say while he was going through his first chemo protocol in the summer of 2021, when he was feeling pretty good with basically no side effects and lots of hope. Yet when it came to the crunch, he did his last recording only 6 days before he died. At the time he said there might be more, but perhaps shorter ones, as he tired quickly. But he never made that.

It seems like your Oliver had exactly the same courage & d’élusive ce and good humour as my Joey. Their lives were far too short but they will NEVER be forgotten.

From everything I’ve read, after the death of a child - which I agree simply does not compare to the death of a partner or parents - one has to reconstruct one’s life entirely. I’m not ready for that yet. Too early. I know I should go out but I have no inclination to do so - moreover it’s tipping down outside. Grey weather to match my mood.

Going to write Joey another letter today. You still haven’t said anything about your writing, Susan!

[JoeysMom]

Awwww poor Sue! You do sound miserable. I guess there are always going to be days like that.

Again, some clear similarities between your James, Oliver and Joey. How many times did the two if you not look down at your suffering sons and say, give it me! I’ll take it gladly!!

You have a dog, Due. How I wish I still did. We had Airedales, the last of whom died a year before Joey’s diagnosis. She had cancer - lymphoma. We took her to a cancer clinic on the other side of Switzerland, every three weeks. It was tough and she suffered but eventually went into remission, which didn’t last. I remember how heartbroken we were - but little did we know then that only a year later we’d be confronted with a much much much worse situation. When Joey’s first chemo protocol went so well, I used to laugh - I recognised the chemo drugs he got - BEP - they were the same as our Koda had.

We didn’t get another dog but throughout Covid we walked a gorgeous Golden retriever - a very special service dog - that belongs to a close friend with MS, who’s totally wheelchair bound. I went over the day before the funeral - I hadn’t walked him for weeks and weeks because I was with Joey every day - and buried my face in his warm fur.

I hope your dog gives you some comfort, Sue. What kind is it?

Thinking of you both

I also tried to upload pix here and it didn’t really work. Here’s my email address: annemariebarnes@icloud.com. Might be easier.

[Suzie4]

Aww thank you Annemarie that will be easier.
Our 3 stories are so similar Susan.
My dog is a Lhasa Apso, not really my kind of dog , I’m more a spaniel, labrador, pair of wellies type of girl but she chose me. Rosie. She rides in the basket on my bike, doesn’t lose hair, I have to clip her, very stubborn little breed. She’s no bother really and good company, very fond of my grandchildren. I have rescued a lot of animals in my lifetime and love them all.
I’m going to do an afternoon at the charity shop now so will continue later.
In response to the drug thing, I became quite an expert in that 10 weeks supervising the different drugs pumped into my son through syringe drivers in both sides of his body. I’m welling up thinking about it. Anti sickness, pain relief, anti hallucinating, steroids! My poor boy hated even taking paracetamol, he had such a high pain threshold and was very stubborn.
My daughter in law has booked to visit her friends on Vancouver Island in the spring for her and Jess. She’s using the ticket money from cancelled Montreal trip. I’m glad she’s going, James and her spent Xmas there once.
I have an 80 year old sister in Toronto, been 3 times, but she’s got an acid tongue and have had to block her from any communication after being subject to her vitriolic comments. Thank goodness I have lovely, supportive long time friends in my life. If my mum is looking down on us she would be heartbroken.
Anyway must dash
Speak later.
Sue x

[SusanJ1]

Just a quickie to say my boy was a film-maker too!
We do all have a lot in common.
I admire Sue for riding her bike with a dog in the basket.
Must go - just back from dentist - now I have to be somewhere else.
XX

[JoeysMom]

Both of you, Sue & Susan, dashing about, and there I lie in bed like a lazy old sod!

[JoeysMom]

Went to the supermarket for the first time in three weeks. So many people I was so uncomfortable. Then went to the pharmacy to get some meds for this horrid cough & chest infection. Loads of people there too. Could barely stand up, feeling so weak - not just from the cold but everything and not having been out of bed for two weeks. A couple of nice people saw my distress and let me go to the front of the queue. Pharmacist asked me what the problem was and I started to explain and then had a major meltdown. She immediately took me to a little office in the back and looked after me when I told her I was grieving for my son and this was just the result of having no resistance. She was ever so nice. Seems I have bronchitis. It may develop into pneumonia so she told me to phone the doctor on call tomorrow if it gets worse.

Well! Sounds like your meltdown in the supermarket, Sue?

[Suzie4]

Absolutely does Annemarie, I’ve done exactly that on numerous occasions. Came out of charity shop after holding it together for 4 hours , got my bike and bawled my head off in the dark. It’s mad. I’m just so bloody fragile. I’ve had quite responsible jobs in my lifetime and I’m reduced to a quivering mess in a charity shop and don’t want to be front of house, in the back pricing items up. Customer service has always been my thing but I’ve lost it completely.
I hope you get your cold better but you couldn’t have had a meltdown in a better place than the pharmacist!! I did that in Llangollen pharmacy when I was picking drugs up for my poorly boy. I jumped the queue too then biked home bawling!!
I do drive its just that I prefer to cycle in an effort to keep myself fairly fit. I carry a bit of weight cos I’m a foodie so like to think it helps.
At least you managed a trip out!
It’s so hard isn’t it Annemarie and Susan?

[SusanJ1]

No wonder you don’t want to get out of bed, Annemarie. Please take care of yourself and do call the doctor if you get any worse. Being physically ill as well being in pain emotionally is a double misery.
Let us know how you are tomorrow.
It’s such early days for both of you. Don’t push yourself too hard, Sue. You will regain your customer service skills in time.
I’m going to check in on you both tomorrow.
Susan J

[JoeysMom]

Good morning Sue & Susan

Thanks for the lovely photos of James, Sue. I was going to reply via email but then I thought I wouldn’t as Susan then wouldn’t see.

It makes me so sad to read that you cry when you look at pictures of James. He was your lovely boy and your heart should rejoice that he looked so well and healthy in those pictures. But easier said than done. When I look at pictures of Joey before he became ill it makes me happy but the later ones also make me despair!! Why so young? He had so much living left.

The picture of James in May at the Swedish wedding was incredible, and you said he’d been told the cancer had gone! Then bam, it came back! I’m so sorry you had to see him go through such a fast decline after the brain tumours were diagnosed and how his personality changed. I imagine that’s not unusual with certain brain tumours, depending on where they are.

One doesn’t get over it Sue. I guess our lives have to change and we have to adapt to a new reality. But how? I don’t know. It’s early days. I miss my son so terribly, as you do James & Oliver.

Joey’s cancer was metastatic testicular, which spread to his lungs, spine and liver. His first chemo went well and last fall was ok. We really were hopeful he would bite the nasty big C in the butt. Then In the winter the lung tumors increased in size. Operations, more chemo, infections. The spring was god awful, and then came May, June and early July with high density chemo and a stem cell transplant. That was pure hell.

He was discharged from hospital on July 8th and had a pretty good time for about 5-6 weeks. We were still hopeful the 3rd chemo protocol had done its job and that the tumours could be removed surgically. But then a scan showed the tumours had in fact grown rapidly again. He was set for another 6 rounds of chemo, but only made 2. From there he went downhill very quickly. On October 1 they discovered 5 tumours in his brain and said there was no point continuing with the chemo. It was untreatable. They did want to start 10 short rounds of radiotherapy in order to stop the pain.

After that we thought he’d go to our local hospice (it’s like a 5-star hotel where we too could have stayed 24/7) but he never made it that far. They couldn’t do the radiotherapy at all in fact as he got a bad intestinal blockage. He did look “fairly” well in that one picture that was taken only 2.5 days before his death. That was taken as he was just going back to his room after one of the many garden parties we had in the park behind the hospital… But the end was so much faster than we imagined! That is what haunts me. I had soooo much more to say to him. I talked to him for ages on the phone on Tuesday night around 2, then the next morning he was in and out of drug induced sleep and very very uncomfortable. The next morning he died. Yes we had expected it but not that fast!!!

Guilt is my number one problem - besides of course missing Joey so much. Strangely, it is not one of Kubler-Ross’ five stages of grief. Guilt is insidious and can destroy you! Even if it is totally irrational. I couldn’t have done more for Joey - I was with him every single day in hospital between May and October, and I checked in on him every day when he was at home in July/August. He stayed partly with us, partly at his place. He had lots of doctor appointments so he’d stay with us before and after. So yes, guilt is irrational. But I’m being eaten up by it! Why did I not convince him to get his back pain seen to? I certainly knew about that! What I didn’t know was that he’d also had a swollen testicle months before - typical male attitude, he didn’t tell anyone. Would he still be alive if he’d started treatment 3 months earlier? It’s haunting.

That, by the way is what Joey’s legacy is all about: testicular cancer awareness. It’s getting bigger, the webstore is doing well and donations are flowing in. It’s still in it’s early stages but the idea is to get the message out for men to self examine and go to the doctor. So far the response has been terrific. Andreas. Joey’s Norwegian buddy, with whom he did the podcasts, is the one in charge. But the idea is that I too get involved. Just yesterday Andreas told me he’s been contacted by a law firm who will do the legal work pro-bono to set up the foundation. Why am I not more excited about this? It will be Joey’s legacy. Because I’d rather he be here!

We can’t do anything about the what ifs or the woulda shouldas but it’s human nature. Guilt and grief are so closely intwined. My friends tell me I did everything I could. I was there with him all the time. Guilt is not rational. I’m therefore going to ask my doctor to refer me to a grief counsellor as I really don’t know how to deal with this on top of the terrible loss.

Right now I have a few close friends who have good listening ears but they don’t know! They have healthy kids! Al of them! Sure they sympathise but if we are to get through this, Sue & Susan. I do think we need more. This is why I am so grateful to have found this Sue Ryder site - but especially you two. We’re if the same age and our sons were more or less too.

I did think of joining a grief discussion group that our local hospice organised. But it’s only once a month and I think it has very different types of people - those mourning their partners or parents. There is no comparison.

As for my health situation: pure crap. Spent most of the night hacking and my ribs feel like someone’s been at them with a sledgehammer. Shall stay yet another day in bed therefore. Will have to be a bit brighter tomorrow as Kevin’s coming over and he’s so worried about me. He’s such a rock. Takes charge of everything.

This has been such a shit year, excuse my French. Joey’s cancer was the very worst of course, but I broke my right wrist very badly in the winter and had several operations and my husband Larry had a stroke in February. Right in front of me. I got him to the hospital in 20 minutes. It was such a massive stroke they said he’d have been dead if no one had been there. I’d been skiing all day and had planned on going out for dinner with a girlfriend (Joey was in hospital but I couldn’t go because of Covid restrictions) do it was extremely lucky I was there. So he was in hospital too for 5 weeks. He’s not recovered as much as he should have because he stopped going to physio when Joey became so very ill. It sounds callous, but I can say it because you understand. We’ve been married 43 years but I could have dealt with his death. He’s older than me. It’s nature’s normal timeline! Outliving our sons is not!!!

Hope you have something nice on your Saturday schedule. Love, Annemarie XX

Sent from my iPhone

[Suzie4]

Morning Annemarie, I can identify with every single thing you have said. It’s so, so cruel, and yes I know what you mean about the order of things and we should never outlive our children.
I hope you feel better as the day wears on and yes what a shit time you’ve had this year. We will all remember 2022 with sorrow.
I looked I the mirror this morning at my eyes,like piss holes in the snow, pardon the expression, but my eyeballs are blue and exactly the same as James’s. I just can’t stop crying, ill never be able to wear makeup again!! We walked in the park on 9th July and had a photo with us all and his arm round me, when I focus in on his eyes he was crying and it’s just like me when I look in the mirror. He looked well and walked a distance, that was Saturday, by Tuesday he couldn’t walk out of the house. I will send you that photo.
It’s a bad day today and I’m supposed to be going fir lunch with 2 dear friends in Filey who I havnt seen since early June.
Trouble is we hung on to every word fro the experts who said our boys were doing well and this outcome was something we never imagined. 10 weeks on Monday and I feel worse. I think it’s time I sought some professional help before I go any more downhill. My husband has been very patient but he’s a mechanic and I just think he thinks like one!!
We are very different, he’s never had a close relationship with his parents, siblings or 3 daughters.
If I had my way i would sell up and buy a tiny flat for me and my dog near my daughter.
He’s outside fixing my car for my trip to
Filey.
Sorry I’m not more positive this morning!
to you both.
Sue x

[SusanJ1]

Morning. It’s a grey one here, very chilly and damp.
But Filey is a lovely place, so I hope it does you good, Sue, to meet your friends there. You can look at the North Sea - I know that coastline well. Your hubby is a good sort to look after the car (and maybe take care of other practical matters). I’m sure your friends will be very kind and thoughtful. They are probably worrying about what to say to you, which is understandable. There are no words.

Annemarie, I’m going to email you a pic. But I hate to think of you being so poorly. Your husband and Kevin must be worried about you.

Talking of outliving our children, and how wrong that is, when we got the bad news last December that Oliver’s tumour was now untreatable (ironically he felt quite well at the time and was even working), we were all devastated. I said to him “I wish it was me”, to which he promptly replied “don’t be daft, Mum!”.
So whenever I catch myself thinking it should have been me, I say to myself “don’t be daft, Mum!”
But it should have been me. He had so much to live for. He has left a chasm in our lives and his darling children will grow up without their daddy.

It is still such early days for both of you. I read another thread on this Sue Ryder site yesterday, it was from someone whose son had just died. This person was reeling and said she/he didn’t know how to go on. I felt so dreadfully sorry. I don’t want to be part of this community. But sharing our experiences does seem to help a little.

Love & hugs. SJ