My love 💔

[CJG4CJG]

My best friend, soul mate and loveliest husband and father to our two children 11 and 8 was diagnosed shockingly on the 22nd of Oct this year ‘2020 and passed away at home the 26th oct this year. 4 days! We had 4 days! The week before he, a teacher, was teaching a class of 30 children primary school age and walking 38000 steps a day with our dog. He complained mildly of constipation and right sided pain at the beginning of October but X-rays and uss showed nothing. We carried on as normal. Sunday he was in bed with pain out of the blue, by Monday The jaundice happened over night. GP referred to hosp ?gallstones?pancreatitis. No.... pancreatic cancer with liver mets and lung nodules. “You have days, they said”.He was 51, I am 34.

A nurse myself with oncology experience I ask everyday, did I miss something, but honestly he was so strong and brave and just got on like normal with the mild symptoms which at the time we thought were ‘nothings’ stress?. We left the hospital an hour of that after diagnosis and I cared for him at home, calling in teams and my friend to help when I was too emotional too. I held his hand the whole time. The day before he passed he sat up bolt up, glazed eyes he searched the room for me and gave me a kiss. Then shockingly stood up and walked to the toilet aided by his brothers. Where he rested his head on my shoulder with a little sigh. Barely any words as he was so withdrawn/unable but the lack of words I felt was powerful. And so In less than two months down the line of what felt like yesterday but each day feels so long, I feel robbed/sad/shock/denial/proud of him and his strength/loss and emptiness. My children lost their dad in less than a week, me my husband, soul mate and best friend, and more importantly he lost his future a legacy now in the hearts of me and the children. What an earth do I do now? I’m broken.

[LisaC]

I’m sorry for your loss , I lost my fiancé last week I am also 34 and a nurse he was 37.

We have no children so I only have to think of myself.

My colleagues at work have been an invaluable source of support, also the hospice have a therapy team who I can call and talk too. I have been emailing the nurses at PCUK every day since we found out in November.

The speed of this disease is absolutely shocking at it makes it harder to be able to come to terms with what has happened and being a nurse I could see the deterioration while he and his family could not.

The day He passed he said he had had enough, it was a hard 5 weeks with a serious infection, pulmonary embolism and low blood count with metabolically deranged bloods he must of felt so sick of it all he had little patience with life anyway so this must of been hell for him. I’m glad his suffering is over as I’m not sure I could of managed to see him go through chemotherapy and all the problems that come along with that too.

I’m trying hard every day making sure I’m eating and keeping myself occupied as it what he would of wanted, he told his family to look after me so that has given them something to focus on.

[CJG4CJG]

I’m so sorry Lisa. Thankyou for your reply. It feels like the loneliest place in the world. X

[LisaC]

It is and people don’t know what to say because of our age.

I went to tescos today and I bought a box of his favourite chocolates the gyilian sea shells so I shall enjoy a few later. I bought some fuzzy bed sheets Lewis would hate them but it’s cold without my storage heater lewy next to me.

It’s difficult waiting for the hospital equipment to be collected from home, Lewis passed in hospital but they got him a bed and few bits as he was struggling to get into bed. I’m lucky in that we have a 2 bedroom flat so I can shut the door and not see it every day.

How are your children coping? Do you have plans for Christmas? We are in tier 4 in Essex but I’m going to see my parents and probably my niece and nephews on the day. It’s been such a long time since I saw them.

Hope your doing ok

X

[CJG4CJG]

Hi Lisa. It’s so nice to have someone to talk too. I don’t know how I’d be coping without the children so that must be really hard for you! Your clearly amazing to be making plans- even if they go out the window that’s ok. TBH it’s nice to have the children as they ate like their daddy but also a worry as I need to pick them up too and both having their moments when I feel already like I’ve been repeatedly hit by a train and reversed over by a car and kicked by a horse! It’s real/it’s not real, I’m ok I’ve got this/shit I’ve not got this; constant torment do you know what I mean? My sons best friend is called Lewis, good name! My husband is Chris (kid, was kid, is kid I don’t know. Miss him.

Thinking of you and Thankyou for your replies and I’m sorry this is happening to you, and that it took him away.

[CJG4CJG]

Going to open stockings and walk our dog to see daddy. Then play it by ear. Want the children to have a good Christmas, as much as possible so going to try our bests. Wine at the ready.

[LisaC]

Yes I bet children are a welcome distraction, I went to Lewis sisters house to drop off the Christmas presents today and went in for a cup of tea and her children were a welcome distraction so excited for Christmas we even had a laugh at some bad jokes they made up so it’s made me look forward to see my niece and nephews even more.

I have good moments and bad moments, I find it’s mostly at the end of day when trying to go to sleep that I get upset I pulled out his childhood toy that I put on the hospital bed and cuddled that last night.

I’ve text my mum and told her no hugs! I’m not a hugger really and it just makes me cringe when they hug me.

I’ve been moving furniture around and bought a box storage unit and built that and have set the tv up on it. It kept my busy for a couple of hours and I could hear him in my head telling me off for rushing and jam it together rather than check all the instructions

I got him some Lego for Christmas so it’s my challenge to build that it’s dinosaur skeletons! I done a small flying one not looking forward to the t-Rex!

I’ve ordered myself a curry tonight so just waiting for that very exciting.

It’s nice to talk to someone in the same position and I wish you a peaceful Christmas. X

[CJG4CJG]

How did it go yesterday?

I found it really hard. Big girl pants were on for the children and they had a nice day which is good, hoping kid would be proud of me! It’s very hard receiving gifts I don’t want, as the only thing I want I can’t have. Hard getting cards just to me and not to us. Or hearing the irrelevant mundane or someone selfish but not intentionally things that people say/do.

Having a day on my own today, kiddies gone to other grandmas for their Christmas.

I have his shirt under my pillow, smells of him. And his flick knife, he had great pleasure buying that #boytoy. Writing a diary every night to get my thoughts out, you do anything like this? Nights are the worst and first thing in the morning when the reality of what is hits again like a train. Doctors gave me sleeping tablets which are good. X

[CJG4CJG]

It’s good your husbands family are looking after you! My husbands family as my daughter says “don’t come to see us”. My mum and sisters have been an amazing support however. X

[LisaC]

It was ok I don’t think my parents knew what to do they just kept asking if I was ok and my dad asked if I was ok for money.

I went to see my niece and nephews too which was nice playing with their toys, my youngest nephew Dylan is 4 and he’s all excited saying auntie lisa look at this auntie lisa! Lol I bought him a volcano making kit and dinosaur fossil digging thing, he loved it. My sisters dog who usually hates me and barks at me whenever I’m near the kids came for cuddles and tummy rubs which was most unusual.

Lewis family ate so lovely they call me sis and have written from big bro in the cards.

There was all food in the cupboards that he liked that I did not so I sorted it out and gave it to a food bank. All his toiletries I will give to my friend who works on a care of the elderly ward for the patients there.

My mum bought me a cross stitch to do for Christmas which I will do at some point I’m just doing the Lego I got Lewis for Christmas, I had a little cry on the way home last night but I mostly sit on the sofa staring at the fish tank.

I’ve signed up for a support group widowed and young or WAY foundation just waiting for some paperwork to come through but they have forums and groups that meet up but obviously not right now with covid.

Are you back at work? I think the gp has put me off for another 4 weeks I just want to get the funeral out the way. I work in a Burns intensive care unit so it’s busy but I don’t want to go back too soon and end up making mistakes because I’m distracted.

[CJG4CJG]

No not back at work, can’t even consider it. Don’t know if I want to go back or what to do with myself without him really. We were together for just over 15 years and he was taken in a week. No warning. Still coming to terms with it and thinking about anything other than getting up makes me feel overwhelmed and sick. It all seems abit surreal. He always said it’s you and me and there’s no me without him!

My family have been wonderful, there when I need them and giving me space when I don’t. His family have a warped perspective on life, he loved them non the less, but they are not warm caring people so he wouldn’t go to them for help and they haven’t offered it to me. Very selfish people, let us down on many an occasion.

Going to have to get the finances sorted in the new year but tbh I just don’t want to.

[LisaC]

I was only with Lewis for 4 years and only lived together for 2.

There is a bereavement support payment you can get from the DWP I think you have to claim within 3 months and it’s a lump sum with monthly payments not much but may help, I’m not eligible for this as we were not married. Although Lewis did name me a beneficiary to his pension which will help with the rent.

Lewis family are sorting out closing all his accounts as his mums husband has experience doing that as part of his job at a veterans charity.

It’s hard with the upper GI cancers as they take people so quickly you barely have time to deal with one issue and then moving on to the next issue, Lewis was admitted to hospital on the 30th October and he was only home for 11 days in between admissions to hospital. I still can’t believe he’s gone but I also think to go through all the treatments and then at the end of the day he still would have terminal cancer. I was worried about how he would cope. How he would cope with all the treatments and scans and appointments he had such little patience. On the day he passed he said as clear as anything‘I’ve had enough’. I could not manage to look after him at home I was too distressed seeing him like that and I needed other nurses to take care of him and for him to be able to have medications when he needed.

I think the hardest thing about it was his family were not accepting of what was happening and contacting private drs to get him chemotherapy and these drs were promising 18months without needing treatment without even seeing him or his bloods or scan results. So every day I had to go through listening to them being told what is happening and that time is short. After he passed they asked if there would of been a cure for him and I said no it would never go he would never be able to have surgery and he did not want any surgery anyway.

Have you had any kind of bereavement support or counselling? I’ve been referred through the local hospice but it might take a few weeks.

Xx

[CJG4CJG]

I have spoken to the local big C therapists and booked in in the new year. I have joined the WAY too but waiting for the verification stuff to come through. Generally most days the children and I are functioning but there has been so much going on I look forward to a bit of calm with the children to discover who and what and where we go from here. It’s lovely Lewis family are being so supportive.

I feel for me and for him and the children and his family and my family and friends it has all been a big shock but by the time we found out it was too late and ultimately he was brave and strong and kind and proud in life and was all those things until the end.

I think your amazing, doing amazing. Lewis sounds like he was a lovely guy and fun to be with and considerate of you, glad you are not alone and that they are all being supportive. I don’t know about you but we are one day at a time, each day is different, and that’s OK.

[LisaC]

Yes it’s just one day at a time, honestly you are doing amazing too especially having children to think about too I just have myself.

I am also awaiting the verification stuff from WAY, in the run up to Christmas nobody got any paper post only parcels so I can imagine it’s all stuck somewhere waiting to be delivered.

I ordered this book from amazon, all in the board it’s a collection of inspirational quotes that some people who work on the underground put up. I opened it on one that probably describes how we are feeling perfectly.

Don’t think you’re being weak for sometimes wanting to hide away; you are tired from being strong it takes strength to face the world every day.

X

[CJG4CJG]

Don’t think you’re being weak for sometimes wanting to hide away; you are tired from being strong it takes strength to face the world every day. I love that Lisa Thankyou.

X

[CJG4CJG]

Don’t think you’re being weak for sometimes wanting to hide away; you are tired from being strong it takes strength to face the world every day. I love that Lisa Thankyou.

X

[LisaC]

I do love a good quote.

There is one from Harry Potter which is one of my favourites.

Happiness can be found in even the darkest of times if one only remembers to turn on the light.

Me and Lewis were nerds and loved all things Harry Potter, marvel and gaming, so we have quite the collection of toys figures and collectible items, eternal children! Never quite managed to fully grown up.

I have been finding it hard to get to sleep even with the wonderful fuzzy bed sheets so I probably need to get in touch with the GP surgery about that but it’s so difficult to get through in the mornings and then all the appointments are gone I might try some over the counter stuff.

Hope your doing ok

X

[CJG4CJG]

Hi Lisa

I tried the over the counter stuff but didn’t work, doctors gave me some zopiclone- gives me 4-5 hours.

My son is struggling atm to manage and regulate his emotions, lots of rage which is not like him. He is only 8 and so missing his daddy. My daughter is too hugely but keeping herself busy however it worries me she is internalising her grief.

Generally days are ticking by and we are still forging ahead, but it’s nice just me and the kids without extended family coming in. Had a dream last night of hubby giving me a cuddle and one of his sparkling big smiles, then woke in tears to an empty bed and an empty tortuous whole that is now life.

Going to sleep away new year.

Hope you are safe and well whatever you are doing tonight. I like Harry Potter, but we loved lord of the rings! Hubby always said it was the best film ever made. X

[LisaC]

I will probably call the drs when they back open for some medications to help I’m just tired all the time, I’m still in bed I can’t be arsed to move.

I can imagine it’s hard for the children to deal with it given they had such little notice. I think anger is a normal reaction.

I’ve had no dreams about Lewis I’m partly glad because it would be hard to see him in my dreams and him not be here.

I absolutely love lord of the rings Lewis would never watch them I think because of the fantasy side, I plan to watch them while I’m off I have the extended versions I think the last time I watched them I was a student nurse so many many moons ago!

My trust are getting the oxford covid vaccine soon so I’m hoping to get that so I feel safer going out, the Pfizer one is only available at another hospital because it’s stored at such a low temperature.

I spent my new year at my sister in laws I made a big tray of chicken dippers and cheesy bites which we and her kids all ate, I kept some in the freezer as the cheesy bites were so good. Hope your new year was peaceful

X

[CJG4CJG]

Sounds yummy. I ordered a pizza which we ate at about 5pm and I went to bed early- wine and sleeping tablets. We were never big fans of New Years anyway, also as I nurse I would often choose to work it rather than Christmas so I could be home Christmas with the family.

Spoken with my mum and sisters, my friends lots and a few of my husbands friends wives and work colleagues have been very very supportive. My husbands family not so much which makes me feel incredible sad as he would have wanted them to look after me and the children but I do not have the energy to worry about it. Get up, get dressed, feed kids, walk dog, bed. Then repeat. Reading a lot of good books on grief atm, my mum bought me one called ‘Languages of loss, by Sasha bates’ omg it rang so true to home but makes me feel less crazy in my crazy. Have you done any of that? I have read on the other forums people saying stuff like ‘it can be detected with an ultra sound and blood tests but in fact my husband had both of these not long ago and all was fine. He literally felt ill one week later...... wings. Just happens to others, and not to you and yours and then it does!!!!

My dog now sleeps on my bed, total hipercrite as I would never let her upstairs before because of her muddy paws but now I feel sorry for her on her own and she too misses her master.

[LisaC]

I was due to do nights on New Years too, I worked nights 2019 New Years. Lewis family have been keeping an eye on me, he asked them too when he was in the hospital , they call me sister and stuff.

Lewis had deranged liver function tests but only slightly he has type 2 diabetic and his sugars became elevated almost 30, the GP just kept saying he was in DKA that’s why he was vomitting and loosing so much weight, I mean he was 30 stone but he lost 7/8 stone in a short amount of time, constantly calling the drs about the reflux and vomiting, pain and they just fobbed us off every time try omeprazole have lansoprazole nothing helped them they finally done more bloods his CRP was high liver function worse, temps were almost 39 admitted to hospital they initially treated him for positive blood cultures but they done a CT CAP as well due to the history. He had obviously had it for a long time and I think back to just before Christmas in 2019 he was sick at work very unlike him and the dr said it was probably a virus I’m like was that it?

We had a holiday in September to Devon rescheduled from June, he was not 100% then either but we still went out walking and eating out lots of fudge and pasties I never could of imagined what was coming.

I have not read any books I would like to I like reading but if you can recommend some that would be great i will look up the one you mentioned.

In some how but I’ve managed to hurt my neck doing nothing so I’m currently with heat pad on trying to loosen it up so I’m not all crooked!

We would of loved a dog but rent a flat so we have to make do with my fish tank and they don’t seem to notice only when I forget to feed them.

[LisaC]

I tried so many times to get Lewis to the hospital in September October time he refused as he was so scared of getting covid, his mum also pushed aside my concerns and said he did not need hospital. It plays on my mind a lot and I wonder what would have happened if I would of been able to get him in sooner. But I also think having treatment would have been more detrimental to him as the treatment offered sounded brutal and unrelenting.

[CJG4CJG]

Yer, no body wins. Cancer is a ! My husband showed barely any signs and was so so strong. His resting heart rate was 60 and bp 128/85 even the day we noticed something wrong. I miss him every second of every day. His smile, unrelenting support always and love. He would make weird but wonderful concuctions of food and always be playing ball with the kids. He would always want to be with me, if he was invited out he wanted me to come too. He was my rock and me his. It’s a very lonely place when the only person that completes you isn’t around. Pottered around today with the children, rearranged my daughters room and cut their hairs. Now sat waiting for bedtime, it always seems to be 6 o’clock

[CJG4CJG]

Hospitals are horrid as a patient, I never realised quiet how bad they are (working there) until we were there together. Noicey, covid mad nazi nurses or just ride and Not empathetic who shouldn’t be caring for people. I don’t blame him for not wanting to go in sooner! Kid didn’t want to be there either and tbh I don’t want to go back- ever!

[CJG4CJG]

*rude