I met my wife when I was 26, she was my first and only girlfriend, everyone thought we were crazy, within three weeks we were a couple, within a month I had sold all my expensive toys to pay for the rental deposit on a drafty terrace house.
She was 21 and still in college, we were both science fiction nerds before it became fashionable, six months later she became ill, it was cancer, now before I get into details sometimes it seems like life, the universe or whoever is in charge up there is taking a real personal interest in your life, in a not so nice way, it may seem silly but I will let you decide and I promise you this is not the plot line to an afternoon medical drama or an episode of house.
Cancer, a childhood leukaemia called Acute Lymphoblastic leukaemia, in a child it is quite curable but much rarer in adults and harder to fight, but still you have a chance, unless you have a chromosome switch also rare called a Philadelphia, well then all bets are off nothing is going to cure it.
You go through a treatment that 5/6 people died during just the treatment to force you into remission, not cure just get it into remission and then you are given medication to keep the cancer away.
As soon as the diagnosis comes through we get married and I give up my career in computers to become her carer, love is like that it wasn't even a choice, we get home and the medication that is keeping the cancer away very slowly starts to kill her, within a year she can not walk without a cane, progressive arthritis, 2 hours maximum sleep a night, weakening and damage to all the major muscle groups, but you fight on, you make the best of what you have, she never stops smiling, never stops wanting to help others.
You think to yourself okay we have had a bad roll of the dice but we are coping, slowly she can do less but we make the most of it, she becomes completely house bound and in a wheelchair but its okay because you love each other and you never stop.
17 years later the medication stops working and even with all the pain and suffering the side effects I wish we were back then because a new generation of medication came out, all the tests, all the learned people in the world all my investigations showed this was a better medication, not that we had any choice.
About this time the only other person I could rely on my mother who was also an amazing woman was diagnosed with early onset dementia, we looked after her for 4 years until she became a danger to herself she is now in a very nice home but is close to end stage now.
It did the job her cancer counts dropped again, but it hit her like a truck, before she got use to it she couldn't even get up out of bed , slowly she got use to it and fought back, we fought back, no one could understand why it was having this effect on her.
Last year we knew it was getting worse so we did all we could together, I would take her everywhere within 10 miles in the wheelchair so she could take pictures and paint.
Then we found out it caused a nasty form of diabetes, but still we fought back we organised her diet and took her blood count down from 23 to a stable 7, every time something new came we got back on the horse we stood back up, together we could face anything.
It began to damage her kidneys, they told us, experts do not worry about dialysis, you have at least a year maybe 2 we will work with the other teams and try to make your kidney's last as long as possible, we can't stop it but we can help, 4 weeks later her kidney's were down to 8% functionality and they still have on idea why it happened so fast.
But you know the drill you stand back up you fight back, within weeks she was on dialysis and we chose to have it at home, I was trained in all the equipment, so well trained that when she did have to go into hospital I was signed on as her support staff, I would go in at 6:30am each morning to take her off dialysis.
Once again things got back to normal or as normal as you can with a house full of medication and dialysis equipment, Paola actually started to feel better, it was all worth it, she was still smiling.
Then in quick succession in late October early November things started to go wrong and once again no one knew why, firstly her throat had a problem meaning any food would make her choke when she ate, we handled that by her only having moist food and liquids.
On the 8th of November we went in for her 2 monthly checkup and we so happy, she even managed to get out of the wheelchair and into the car on her own that was a huge thing we were so amazed and laughed.
You've seen the pattern though haven't you how every time we stand back up something new is in the wind.
The next morning Paola woke up with acid reflux and heart burn and because of her weakened immune system we though "oh no she caught a stomach bug from the hospital visit".
It wasn't, I'd never heard of a silent heart attack, it seems if you are female and have diabetes you can have a heart attack without the normal pressure and pain.
she ended up in the coronary care unit.
The big problem was because she had full renal failure they couldn't do an MRI or a CT scan because the dye would kill her (a normal person it just passes through) those are the main two big diagnostic aids.
They did an angiogram (a needle) and an echocardiogram, which showed two of the three primary arteries were blocked and her resting heart function was 15% (a normal persons resting heart function is 50-60%).
So they used medication to stabilize her and it all was looking well expect on the 19th 2 days after my birthday I came in to setup the dialysis and she said "Jason I feel more ill than I ever have before" to which I replied "hon you just had a heart attack" we laughed for a bit and then she said "we have rolled the dice so many times, I don't know if i'm coming home this time", so we talked about funerals and what songs she wanted played, I stayed late.
You know the pattern.
20th November I came in at my normal 6:30am took her off dialysis, we chatted and talked, she had a good nights sleep a rarity, she wasn't in too much pain and was happy, the nurses were happy, the Main consultant came around and was so happy with how things were going they removed the EKG so she could move around better, there was talk of upping the medication over the week and getting her home by the weekend.
As I went home to let everyone know the good news she messaged me and asked about Minecraft (we were both gamers and she needed something to keep her sane in hospital, so I bought it on the google store and told her to download it).
When I got home, I went on the computer and let everyone know the good news, I then went looking for a new ring for her, she had a ring on her little finger and it wasn't smooth it could catch on things, I saw a really nice smooth one with a dragon inlay, I texted her asking what her ring size was, 30 seconds later the nurse rang me and told me to come back as now.
She was sitting in her wheelchair playing minecraft and listening to a new song when while chatting with the nurse she said "my chest feels funny" by the time they got her on the bed she was unfocused and had the first of 2 cardiac arrests.
I got there within 6 minutes of it happening, I was in the room as they worked on her, they managed to bring her back but her heart failed again almost straight away, they let me decide when to stop and I held her hand as she slipped away.
I feel lost, numb and in pain, i've wrote her story as a short novel and it is on my link as a download, it is also on Amazon, I did the funeral service and everyone said I was wonderful and no one could have done better, what else could I do, I knew her best.
I have no close friends, no family, I am alone now.
All of that would be enough for anyone to take but it seems someone somewhere has a bit of a sense of irony.
7 days after Paola died, I was diagnosed with Bowel cancer, hopefully its contained within my colon but no way to tell really until they get in there, I go into hospital on the 3rd January.
And you would think that was enough but the one light in my life I have left is my two dogs and I noticed that Beryl our terrier was squinting and one eye was hurting, its glaucoma and it may just be the straw that broke the camels back.
You win whoever or whatever you, whatever reason things like this keep happening.
Sorry I think I just needed to get it all out and have a good old rant.
How is your day going.
Hi Calranthe, I just wanted to let you know that I read your message. Your story is with me and others here. I say this because there's really nothing I can say or do that will make the pain go away or understand the irony of it all. My wife passed away a day after giving birth to our baby girl. She was 36. I've heard and read all of the "I'm sorry for your loss" and "prayers for you and your family" messages I can muster. Those never really made me feel better and I know these are things people say because there is really nothing real concrete to be able to say. No one really understands why or how or what happens after.
What has been making me feel a little better is when I see messages about prayers being sent for my wife and our daughter. I keep thinking why would they pray for me when I am still living? The devastation that I feel is nothing compared to what my wife went through; what Paola went through. I've been telling people, don't pray for me. Pray for my wife and daughter. So I just prayed for Paola along with my wife.
Another thing that has made me feel a tiny bit better is telling my wife's story and having it be read and acknowledged. How caring and selfless she was. How she fought, in a different way. How much she just loved. While I do not know Paola, reading your story tells me A LOT about her and her spirit. I couldn't tell you why telling her story and having random strangers read her story made me feel a little bit better but it did, for a short while.
Regardless of your beliefs, what we know exists here is hope and love. They are both free to give and receive. A lesson I am learning from my wife who loved so freely with no reservations. I love my wife. I love you and Paola. I hope we will all be together once again, whatever or wherever or whenever the next phase may be. I don't say this because we are going through this but because we are all human; love and hope is what really drives our world and our souls.
Lastly, please come back and let us know about the cancer. My father just went through surgery and treatment for this this year and I also had to get checked since I became high risk. Same with your two dogs. My dog that I grew up with had glaucoma and needed surgery as well sometime ago.
Please be strong and fight.
I think that a place like this, with people who have gone through what we as human beings would never wish on our worst enemy, we understand something that no one should have to understand, I am happy that all those people I see enjoying Christmas or spending time with a loved one do not understand, it pains me to know other people go through this.
Before this hit me, I could never understand what real loss and real grief meant, we only know now because we live it.
When people say "sorry for your loss" or "give it time" or "don't let it drag you down" its coming from a place of good intentions but without understanding nothing feels real, everything feels disconnected, we keep ourselves busy because that keeps it a bay.
This is sadly also when you know what true love means, love is a word over used, a lot of the time without thought, when you lose that person the one who you lived for who meant everything to you, it doesn't go away.
It sucks, seems to be no rhyme or reason to it, I spent 2 years at her side in cancer wards and then much later Renal wards and I saw really good genuine people all the time who had everything taken away from them.
Why? I think that is what haunts me, why? she was a good person she never complained even though she had every right to, would always make time for others and loved solving peoples problems.
That paragraph is probably echoed by so many people here, the world feels a little darker a little less when these people leave it way before there time, I mean Paola was 21 and in college, she wanted to be a librarian and also explore archaeology, the world needs more good people not less, 42 years old when she died, that means she suffered for half her life.
I'll be thinking of you and hoping that you report back to s after your visit on the third.
Thank you, I will try to keep everyone informed, it looks like I will be in hospital for around 5 days.
Hope everything went well.
Thank you for sharing your story and the incredible love between the two of you. Such love never ever goes away.
I too met my wife very young and we had 25 good great years together!!!
I hope and pray your cancer is early and you will have a strong and quick recovery!!!
I know she is now holding your!!!! hand!
I think you are terribly courageous. I will hold you in my thoughts. Sometimes it does feel like the universe is against you; I totally get that. My husband died from rectal cancer 2010. He had Crohn's disease (inflammatory bowel disease and was diagnosed just before our wedding). We had 31+ years together, but a lot of that time (fortunately, not most!) was spent in e.r's and hospitals. We have two beautiful daughters, and if not for them, I probably wouldn't still be here. They gave me a reason to keep going. So I totally get it. I hope you find something to keep you going; you are important and there's a reason you are still here. Best.