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Posted

I ordered that book you talked about on amazon, I got the verification for the WAY group and joined their Facebook groups too, they have groups for the counties and they usually do meet ups and meals out when it’s not covid obviously, it will be nice to meet people in the same situation.


Yes I would say I did not appreciate how it would be to stay in hospital 24/7 for all that time, we were lucky that the ward sister allowed us to visit when he got his first diagnosis, I’ve only stayed in hospital overnight myself once due to severe tonsillitis and it was hard with all the things he had going on and being woken throughout the night for antibiotics and the usual night time noises of a ward.


Lewis never done much cooking although he did make a pasta bolognase last year and I have photographic evidence to prove it. I would do most the cooking cleaning and shopping I guess because of the shift pattern, Lewis was a window cleaner so he was working week days.


He received a package today, it was a chemotherapy kit I ordered from a charity for him with bits to make him feel better, sucky sweets, hand gel, note book and pen, I will give them a donation.


Hopefully your weekend is going ok x

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Posted

That sounds like a nice idea to donate it. Can’t bring myself to move/donate anything. Everything is as is was. But in time I shall make a donation to The Dogs Trust on behalf of my husband. He loved his dogs (all animals really) much more than humans.

My WAY stuff came too a few days ago but is sat in the kitchen and I have t done anything with that either, but I shall. TBH I like getting your messages, just a little note from someone ‘outside’ the bubble feels comforting. Have you started the book? I might read it again. Generally we are all well ish and doing little bits each day, but plans for the future or more than a day in advance still feel torturously scary so I don’t. Little walks with our dog ‘Stellar’ (daddy named her) and hair cuts mummy style for the children yesterday. Raining buckle loads here so chilled morning and the rest of the day... we will see.

Posted

I like the messages too, it helps to talk to somebody who is actually understanding of what your going through.

The book has been dispatched from amazon so just waiting for it to arrive.


I’ve started to take the Christmas decorations down, I put them up at the end of November as a surprise for Lewis while he was in hospital with the PE he loved Christmas so it was nice for him to come home too. Now I just see the clutter. I’m usually a tidy person but I just can’t be bothered to do anything right now.


I’ve sorted out some bed sheets and old duvets to donate to a dog shelter as Lewis loved dogs too so he would be happy that his bits would give them something warm and comfy to sleep on. I’m hoping to adopt an animal at the zoo too when it reopens, he loved all animals really, on our holiday in Devon we went to an otter sanctuary we love otters so I will probably adopt an otter at the zoo.


I booked my first covid vaccine for Wednesday though so I shall pop and see the work girls for abit, it’s just nice to see people that are not your family.

Posted

Really frustrating, I just wrote a post and it logged me out. I like talking to you. Our Christmas decorations are still up, but I have cleared the dresser of the bereavement card. Little progress. I miss the work girls too, friendly bants, but tbh that all still feels like betrayal and inconceivable atm. I fine calm in walking the dog and being with the children. It’s amazing how some people really stand out in a crisis! My sons best friend at school Lewis’s mum char, although friendly before, has really been a rock to me. My best friend is going through a nasty divorce and therefore it’s hard for her and for me to seek solace.

My sister tested positive for covid so we all had tests and awaiting results before the children can go back to school. Not heard from any vaccine people. Saying that, not heard from anyone. Feel abit like because it all happened so quickly ‘within a week’ the pall care and support teams have not been there as I would have expected. But I guess that’s life’s lesson now, without kid, I am ultimately alone. Something I now must get used to.

Have you thought about work? I am at the end of my sick pay period, don’t know what happens from here but I’m not ready to return and can’t make any decisions about the future yet. Just staying afloat. The sleeping tablets are really good though so I’d recommend them.

Thanks lovely that your lew liked animals too. I think you get genuine comfort in animals. A friend of kids bought the children annual passes for the zoo here but tbh one) I have to take them and my anxiety in the car is still high and 2) I have to take them alone or alone without kid. Erggggg

Posted

My husbands nickname is ‘kid’, he used that more than his actual name, Chris. Although we used to call each other kitten, or doggie, or (weird sense of endearment I know) x

Posted

The books just arrived from amazon, I got the one you recommended and one called modern love true stories of love loss and redemption.


I got rid of the bereavement cards as soon as I got them, I did not get many and it was depressing looking at them. I got a back log of post last week a Christmas card for me and Lewis from my aunty and uncle and then a sympathy card in the same lot.


I set my alarm to call the drs at 8 this morning because if you don’t as soon as they open you will never get through. Anyway I turned the alarm off and went back to sleep for abit, I had a little dream about Lewis too I can’t remember now but it was comforting.


I just had a robin on the bird feeder on the window it stood there for abit just looking at me before eating, I also saw the squirrel run on the telephone line that Lewis would always see.


I started a in memory page for Lewis on this site a few days ago, I put it on my Facebook last night and it’s had almost £700 in donations. It makes me happy because this money can help other people and fund research for treatments or a quicker diagnosis.


I would call Lewis, Lewy or Lu Lu and he would cal me Li Li.

Posted

I had a dream the other day, I was running towards kid and he gave me one of his big charismatic smiles and he picked me up and gave me a cuddle. Woke up crying. Spoke to the doctor today, he said his cancer was in his pancreas, abdomen, liver, and lungs basically widespread. I find this so so hard to comprehend... he literally 4 days before was teaching a class of 30 7-8 year olds and walking the dog miles and although ‘not right’ totally functional. It blows my mind. He must of had so much strength, I always knew he was amazing and a true gem but to be that riddled and not know, or necessarily show major signs is beyond me. My brain can’t take it. Plan is to take the tree down tomorrow. I also have my first counselling appointment in the Avo. Doctor signed me off until feb- still can’t comprehend going back. I’m Now reading in small amounts a book called All at Sea by decca Aitkinson, only just started it but seems ok. Keeps my mind from endless less not watching every film I put on.

Posted

Oh poor guy that is quite a spread, I wonder if like when children are ill they can hold for ages before dropping, because your husband was young and fit it did not affect him until he was too poorly. At least he did not suffer with lots of pain and being sick.

Lewis was sick almost every day and abdominal pain which only responded to MST and pregablin.


Lewis was not really fit and had declined mostly in October but I just put it down to being home on furlough and eating loads.

The mass in Lewis pancreas was almost 7cm and ‘numourous’ metastasis to the liver, before he died his eyes went yellow so the pancreatic tumour was growing into the bile duct.

It’s such a hard cancer to treat you have a slim chance of a year if there is spread to other organs after a brutal round of chemotherapy.

The memorial page has raised £800 so far so that will help research new tests and treatments.


I’m off until the end of January so far but I get 6 months full pay which will take me to April time.


I’m also watching loads of films but so many times as I get distracted halfway through!

Posted

Yes I do think being the strong proud guy that he was he would have hated being ‘a patient’ and being sick and really really poorly. So for him atleast it was quick. Just so blooming hard to comprehend and accept. Regrets of normal life trials and tribulations that wouldn’t have been an issue had we of known time was limited. To top it all off, with him not around everything is breaking.... first the outside lights then dishwasher, washing machine, now the hoover. Home schooling is a no from me right now. The fund raising idea is lovely. I started a just giving yesterday and it has over £600 in for the dogs trust- he would always say, animals before humans. I guess because they just offer you so much. Our dog gets me up and out of the house. She misses him too. Feels very lonely esp with all this stupid covid. I have pretty much covered most of Netflix now, started Brigeton last night a series, with wine obviously. Going to go and see him shortly then the best part of the day.... bed time!

Posted

Wow £600 that’s amazing I’m sure there will be lots of dog’s benefitting from all that fundraising. I had an aquarium before I met Lewis and he adopted the fish and shrimp I have a catfish who is about 7 years old I hardly use to see him now he comes out from his cave most days, I’m also having a robin visit daily.


I worry about things breaking too, my car battery died last year which Lewis sorted and I had a flat tire which he also sorted for me, I have a good breakdown cover but my car is almost 11 years old so I worry if anything big will go wrong with it.


I have mostly been re watching old series of programs on Netflix Lewis used to pick what to watch mostly, we watched a lot of friends and Benidorm while he was in hospital. I don’t know if I will be able to watch them anytime soon.

I had my first covid jab today, achy arm like the flu jab so far.


I’ve not been to see Lewis where he is, he said he did not want me to see him when he was gone and to be honest I keep seeing him how he was in the hospital so I don’t want to have another sad image in my mind. I sorted out some clothes and bits for him pictures and a cuddle toy I bought him at the zoo. I hope he likes what I’ve chosen, I picked a polo shirt he liked it but the collars were so stiff he would end up looking like Harry hill but he will look smart.

Posted

I’m sure he would be happy with whatever you chose. That’s what I keep telling myself... anyway. Trust and love, kid wouldn’t have cared what I chose for him and tbh he looked handsome in anything although I did teach him over the years to wear nice shorts and T-shirt when going out rather than a T-shirt that says ‘tickle my pickle’ 😭 which I now wear in bed and it makes me laugh.


Mooched around today, took the decorations down and tidied. All felt/still feels abit pointless but kept my mind busy for a while.


Looking forward to bedtime, my favourite time of day. It’s very hard to find motivation when you feel like your limbs have been pulled off and soul sucked out! However, the children keep me functioning. Little pieces of daddy.


Had my first counselling session the other day, lots of silences and the lady going “umm yes, I understand, ummm how horrible and shocking” didn’t find it helpful but I’ll persevere in hope if nothing else I get more syllabuls next time. What about you?

Posted

Yesterday was rough, I met Lewis mum to discuss funeral plans, she took me to a local church where they would like Lewis to be buried it was really nice and peaceful pretty and I could hear birds and ducks and it was small too so not like I would be lost looking for him. It was not until the afternoon that I got worried about where I would go, Lewis grandparents ashes are being buried with him he loved his nan and grandad so much so it’s nice they will be together but I got upset thinking that I would not be able to go with him. I cried all night and wished I had taken all his morphine and not sent it back to the pharmacy. I asked his mum this morning if I had no place to go when I was gone could I go in with him. She said yes.

I went to my mums for dinner today my niece gave me a letter for Lewis asking him not to die because she and I both love him and he is nice to her. My sisters dog was also there, barking and growling at me and then came up to me sat down and winked at me and had cuddles.

My mum said I look really tired I’m not surprised I don’t sleep till 2am usually and is a interrupted nights sleep, it’s abit better since I bought some pillow spray to help smells of lavender and other bits. I still need to call the drs about medication I think anti depressants would be a good shout for me, I felt like I could of done it with it before and it would be nice not to feel so much.

I had a chat with the family support the other day it was only 10 minutes and I cried the whole time. I also received a card from the pancreatic cancer uk charity thanking me for the money the tribute page has raised, it meant a lot as they took the time to hand write a card, hopefully we can get it to over £1000 with the funeral collection.

Posted

Oh bless you. So sorry to hear you sad such a sad day (of many I’m sure), it’s like that but it’s ok not be ok!

We had the funeral two weeks after he passed, like you a small idilic little church near home where people walk their dogs and the birds tweet by and cows in the field- it’s on a hill. Hubby birthday soon so thought I might get a bird feeder for him.

It’s lovely that his mum said you can go there too- as scary as that sounds now, I believe that has given a bit of comfort knowing I’m going to him one day.

I know that feeling, I still have a big bottle of oxycodone in the cupboard, but I couldn’t do it to the children so I get up everyday and applaud bed time. But it feels lonely and empty. I definitely need antidepressants- or stronger ones atleast, doctor gave me sertraline for depression/anxiety but a low dose but feel the gaping whole is getting bigger. My best friend is going through a divorce and has stopped being understanding of my grief, she doesn’t want to be friends anymore😭 and my husbands family have abandoned us 😭. I just don’t think people understand true grieves inability to just ‘get up and carry on’ it takes time. I think walking the dog keeps me going, and I know when hubby was down that is what he did.


Have you chosen music for the funeral? He had an instrumental piece which he loved but the rest was rushed I feel as it all came upon is so quickly. Ultimately, I believe he would be happy with whatever I chose because he loved me and me him.


The funeral will be hard but after the funeral I found is when you really need people and the months/years that follow. Big kisses, you got this X

Posted

Lewis always said he wanted a pink floyd song for when he goes in and I was really stressed when he was ill as I did not know what it was, I played the album when he was in there and I recognised it, there is so many songs I know he would love to have, I could basically make a 10 hour playlist for him. His mum wants his friend playing guitar I said he could play one of Lewis’ but I don’t know what they will allow at the church. I’ve only ever been to two funerals, my ex’s nan and my grandad last year. My grandad did not keep In touch When my Nan died when I was 13, he had dementia and had no idea who we were, but I still got really upset at the funerals, I don’t think I can manage to be in there, I’m such an ugly loud crier I don’t want to see him in the box and have people looking at me.

I don’t have any pets to cuddle sadly the fish get away from me, I would like a cat but I privately rent and I can’t be arsed to ask the landlord for permission and have to explain why I would like a cat, it would probably just get him worried that he won’t get his money every month. My sisters dog which usually hates me followed me everywhere the other day and gave me lots of cuddles.

I definitely need to talk to the dr it’s just such a pain it takes 100 plus calls to get through and you have to ring at 8am.

A colleague also lost her battle to covid which sucks, I feel for her husband as I know exactly how he is feeling and he probably did not get the time with her as she was in ITU.

Sorry I’m so down I feel like I’ve gone back a million steps 😔

Posted

Please don’t be sorry, and you haven’t gone back steps. I read in the book we were talking about that grief is not linear and we will dip in and out of each stage and that’s OK. I went to see kid in the chapel of rest and asked them to put him straight in there. It was really hard but I needed to see him on my own, although it was closed and I couldn’t see him see him. I didn’t look at it at the funeral and just went through the motions, I guess not really processing it.


I get what you mean about making calls, it’s really hard work, and certainly asking someone else is harder be that pride, or energy/motivation, or whatever. But for me certainly the sleepers help, not always but better then before. I haven’t finalised finances or closing accounts or informing people, little bits done with help from my mum but it’s so very very hard and again comes with acceptance, which I haven’t yet, nor will I ever fully but am told and hopeful from others experiences that that too is ok and I will learn over time to carry it easier. Does this make sense?


I’m so sorry to hear about your colleague, and of course her spouse. Just tragic and inconceivable, and yet we are all in the same unwanted unjust inexplainable journey be they different roads.


Much love to you and the gold fish. X

Posted

I think I had anticipatory grief too, as soon as he told me I knew it was not good. It’s weird the first lockdown we done all these fun things at home, making cakes, baking bread, making music, gaming, second lockdown in hospital planning appointments, third lockdown I’m alone.


I will set my alarm to get me up in time for the drs opening, I get to sleep it just takes hours and I don’t feel like I’ve had a good sleep. And I just sit during the day sometimes I do crafty things but mostly just sit and stare at my phone.


Someone else is taking care of all the accounts, Lewis had little in his bank account and quite some debts, I did not know he owed as much as he did but at least I’m not responsible for it.


Thank you x

Posted

Yes I think, maybe in my opinion, as soon as you here pancreatic, certainly as a nurse you go ....... gasp! For me it certainly started there but like I said all happened within a week.


It’s lovely that you did all those things together and cruel that you now don’t have each other to share experiences with, and now I guess experiences you don’t necessarily want without him. But everyday is a triumph, everyday you get up, get dressed or not, but you get up is a triumph! And if you don’t get up, you have a duvet day that’s ok.


We did lots of bike rides with the children the first lockdown, board games and garden challenges. Being a PE teacher and keen sportsman, everything was a competition or a challenge. We went for a picnic on our bikes right where he is now, at the top of the hill, again biking challenges and laughs.


Have you got through to the doctors? Also, when is the funeral if you don’t mind me asking? I will be sending you virtual hugs. X

Posted

The funeral is the 28th such a long way away.


I haven’t phoned the drs, my mum text me this morning my nephew is covid positive, he was tested prior to going back to school as my sister works in tesco, he’s not ill but he got it from someone in the family, but then none of us have been ill either.


I get up and get dressed every day even if it is my new uniform of hoody and jogging bottoms.

We played lots of games monopoly, top trumps things like that I used to always win but the last time we played monopoly he won.

Posted

I will be thinking of you and him, and your family on the 28th. I do hope your nephew remains ok with it. My sister was positive but no symptoms, this second wave seems to have got a lot of people however haven’t followed it really as don’t have the capacity.


Ahh bless him, I do like monopoly but is such a long game. He always won when we played. Hubby always said “a quick games a good game”


So are you in isolation then or have you not really had much contact? I guess life atm seems to be isolation anyway, that’s how I certainly feel. Yet I get up, tea toast and drugs preying for the day to be kind.

Posted

I went to my mums for dinner Friday evening and sat next to my nephew, it was just for dinner as he spent the rest of time upstairs on his phone (he’s 11).

So I will have to isolate until next Monday, luckily there is nothing going on outside and it’s cold and horrible anyway.

I got some new diamond painting kits to get on with so that will keep me occupied. And there is a magpie adding twigs to an old pigeons nest in the tree outside my window, seeing the pigeons nest and hatch kept me occupied during the first lockdown.


I need to clean my fish tank at some point, and I bought clotted cream and jam but forgot to buy scones, I think I have enough ingredients to make them so I will hopefully do some baking.


Hope you have a peaceful day

X

Posted

I think that’s what I need to do, set myself little talks or bits and pieces to do. Clear the fog if only for a few hours.

Relatively ok ish day yesterday, ‘carried it’ of that makes sense. With some help and company from the children. Still no sleep and still very jumpy, may talk to doctor again.


Wishing you a calm day x

Posted

I spoke to the GP yesterday, I called at half 3 and they got me an appointment, I thought they would say no because you have to call at 8 usually, maybe they were waiting for me to call them.

She has prescribed me some zopiclone 1 or 2 tablets hopefully they help. She said they won’t look at anti depressants yet. She will call me again in a week.


I managed all the jobs I set for myself yesterday, cleaned the fish tank and filter, it’s like a riptide in there now the filter is unclogged! And the scones were very good.


Hopefully you have a better nights sleep tonight x

Posted

How did you get on with the sleeping tablets?


Going to not take mine for a few nights see if when I re take them the work again, as I’m not sleeping again. Last night and night before awake at 2,3,4,5,6,7! Bad few days, just feels heavy too heavy to carry that make sense?


How has your day been?

Posted

I only took 3.75mg of zopiclone the dr said I can take 2 if I need but it worked, I woke up at half one abit confused but fell asleep again, I don’t feel as tired today, I even managed to make myself a proper dinner. A sad toad in the hole for one (probably could of fed two though).


So I feel better for the sleep still got abit tearful at times, things I go over and over again in my head thinking should I of done anything different.


Things feeling to heavy makes complete sense, does it help to tell people how you feel?

Posted

Hope your doing ok?


I just realised I don’t know your name!


Hope your having a peaceful weekend


X

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