It’s just crazy Maddie that your son in law is acting like this! How can he possibly keep you away from your own daughter? I agree with your husband that he needs to be spoken to! And to be told in no uncertain terms how terribly hurtful and difficult he is being!
Hoping you can all do something about this!
And thank you for your kind wishes. I never thought I’d be spending a Saturday evening in such physical discomfort and mental anguish. Would rather be in the kitchen cooking up hamburgers for both my sons! They loved coming over for that I can’t stand cooking now.
Thank you Marina. It is a difficult time for me with Gemma’s anniversary and her birthday but I have got through those days. We manage somehow. I hope you are doing okay. Much love xxx
Hi Maddie, I am not completely positive on this but I think with you being Sarah’s parents he cannot stop you from seeing her, if I was you it is something I would look into. Good Luck with this…
I also hope when the right moment occurs John will not only tell Sarah’s husband what you both think of him but a smack in the face might more beneficial …
Take care,Marina xxxx
Hi victoria seems you did Gemma proud
Flowers are beautiful . Anniversaries are so hard . They say time heals.i dont think it does it just becomes more real our babies are not coming back .not been on because i feel im at a loss right now . Life goes on i know but it makes me mad . Just want my boy back . Its going to be two years april it feels like yesterday xxxxlove and hugs zoe xxx
Dear maddie
Im sorry to hear sarahs husband has blocked you he sounds like a control freak .how dare he .he does not have the right to stop you seeing your daughter .all youve been through .and now this with sarah he should be ashamed of himself. Dont you dare think your weak. So much to cope with .we are all stronger than we think maddie .you look after yourself .your loved alot on here just vent when you want .we all know we can say anything we all understand the hurt. Sending you love and strengh my friend love zoe
Thank you Zoe. Our physical state is definitely influenced by our emotions. It’s been a long ten days with this pneumonia and it’s drained me. But I’m certainly not feeling sorry for myself. If I catch myself doing so for even a second I think back to all the terrible suffering my Joey went through and it really puts it in perspective.
Thank you for your kind thoughts. I am constantly amazed by all the care and thoughtfulness of people in this group. I continue to feel hurt when my neighbours simply keep out of my way. Do you know some have not said a single word to me since Joey died! And never asks how he was doing during those awful awful months he suffered so and was in and out of hospitals. The Swiss can be very strange people. None of my English friends here are like that.
Youre right, the Swiss can be strange. I have a Swiss friend and although we havent seen each other in years (she now lives in France) she has never messaged me nor made any comment on Lisa’s passing even when our Jemma launched a Just Giving page on FB to raise funds for the ECMO ward at Aberdeen Royal.
When we received donations from across the world it just didnt make any sense to me at all.
Like you, when i am unwell i always think of our poor sweet, beautiful girl in that hospital bed with a machine keeping her alive. I have no right whatsoever to feel sorry for myself nor will I.
They wennt before us, showed us courage and taught us how to live the rest of our lives.
With love, Kate xxx
Oh Kate you are so right! When I thought I was wimping out with this silly pneumonia all I could think of was Joey’s courage. I know he didn’t always feel so brave but he brought so much strength to the thousands of followers he had on his video podcasts of his cancer journey. He had so many many messages from people all over the world encouraging him but also thanking him for his eternal positivity. He helped many with his wit and humour, people who themselves fought this diabolical disease or had family affected by it.
But I knew about and saw the dark side too - how he didn’t want to die but felt it was coming. It’s that which breaks my heart still every day. Knowing how much he suffered, but physically and emotionally. And I feel - whether that is justified or not - that I let him down because we never discussed his impending death. He never “let me in” to try and make that easier fir him. I tried to stay positive for him. I was with him all day every day, just leaving when he asked me to, when he wanted to just be with his friends. He must have spoken to them about his death because he gave away some of his things and asked his best friend to speak for him at the funeral. I thought we had more time left - weeks, maybe even a month or two with palliative treatment - but the end came very fast when he got an intestinal blockage from all the large doses of fentanyl. Catch 22: no fentanyl, terrible pain; lots of fentanyl, blockage and sepsis and death.
I know it’s still early days for me - 4 months exactly at 7.45 tomorrow morning - but I wonder if this will ever get any easier. I know the missing won’t! I had 28 years without him, then 42 years with him! And now the rest of my life without him! I’m just h look as I’m 70 now and not 50 so at least the heartache won’t last as long.
I understand i see sam go through such crap in the last four months of his life .he was dissappearing before my eyes so thin .even talking was hard in the end weak .he said mum i cant be in this bed .me and his dad carried him to the chair .he passed in the chair. He never once said why me mum . They gave him a year .he walked out of the marsden and said thought i would have at least 10 mum .24 the bravest super hero . He would not talk about it . He bought all his neices and nephews presents he was amazing. The day before he died he came back to life he was going up and down in his chair. He was chatting about things when he was little . He was very muddled but it made sense . I slept beside him for four months he woke that morning at 3 had a wee .told me he loved me it was strange j never slept but l went into a deep sleep .i woke ar 8 i new he was gone. At least he died in his sleep at home in his chair .what a wicked world zoe x
Oh Zoe that is heartbreaking! Recovering from such trauma is what makes our journey of grief so much harder. Knowing and having witnessed the suffering of our sons.
Joey spent a total of 120 days in 5 hospitals. In between he was at our place or at his over a 16-month period. But we couldn’t possibly have had him at home in the end. He needed round-the-clock care, especially with the pain.
My English sister-in-law who was a nurse for 45 years always said to me that pain was not necessary in our modern medical system. That it could be controlled! It’s not true though. Sure, eventually they were able to up the dosage of his fentanyl more and more with extra bolus shots, but the pain would come on so fast it was frightening.
Ten days before Joey died I spoke to a palliative nurse and said that what was causing me even more heartache than the knowledge my son would soon die, was that he had to suffer so much. I - like you and every other grieving parent in this group - would have done anything to stop that suffering. When our children were little we could kiss scraped knees or broken bones even, and reassure them when they were anxious or sad, but when they were facing death we could do nothing - just stand by and love them and wish it was us that could take over the suffering for them.
But since Joey died I now ask myself if I was really being truthful when I said nothing was worse than his suffering. Am I a hypocrite? Nothing can be worse than not having him hale and healthy here, in my life, till it’s time for me to go.
I’m hoping to get over this pneumonia. Day 10 now and it shows little sign of getting any better. No doubt that’s not helping my rotten emotional state.
Sending love and hugs to all you other grieving souls out there, missing your sweet children.
My son Richard would also have been 42 on the 5th May. He died on the 29th of May, last year. He was severely disabled and had no verbal communication. He had a massive seizure and was unconscious for three days, however on the night he died he opened his eyes and said mom then slowly slipped away. Like you it broke my heart as although during his life he did make a few sounds, he never said anything that sounded like mom. I don’t know how I have got through the last eight months but somehow I have and I’m still here, although some days I really don’t want to be.
Bless you darling girl. You have had a lot to deal with.
Our beautiful Lisa, 2 days before she died, fumbled to get her hand out of the covers to hold mine and said ‘will you be ok Mum?’. I knew then that she had been told she wouldnt make it. She put on such a brave face for us all to try and spare us pain.
Bless our beautiful children.
Heartbreaking Kate! And Lisa worried about you amidst all her own pain & anguish! What courage our children had! My Joey hugged me a few days before he died and said he was so sorry that I would always be sad. I know he didn’t wish that for me, yet he knew me so well too.
Of course its a bad day, and you are laid low with pneumonia and it is only 4 month so yes you will have in the early times more ccrap periods than good ones be kind to yourself , yes I know I will see Sam again, like Joey Geraint (my elder son) doesn’t believe) but I know that I will see Sam again. When Roy died (my mums husband) exacty to the day 18 months later Sam 9th December, Roy 9th June we stayed wth him all night and I watched him pull his arm (he was in a coma) from beneath the cover and stretch it out as far as it would reach (as if he was reaching for something/someone) then his arm fell back, he died the next day at 9am, I knew Sam was there because I could feel him John and I sat there with him through the night. My mum couldn’t make it she was too tired!!!
Love Helen:
Just read this, he was just like Sam, and I think Joey like Sam was in the only way he coud was shielding you Sam and (I didn’t know) that he had already told his friends that he knew he was dying, and yes like you Im 67 so not too long to wait.
I can’t stand cooking now.
