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Dad given two months to live.

12 Mar 2019 16:08 in response to MiGi

Hi MiGi,

This is an incredible long sad story, so as @Chriss ‍ I also went to read your home page to be fully updated. 
That has been a whole rollercoaster for you, honey. It seems you are a supermum and a superdaughter!
I'm going through similar things but in my case is my boyfriend that is very sick (stage 4 colon cancer) and I'm also changing jobs!
I'm sorry you are going through all this mess. It's tricky because you have to deal with your own feelings and also support and caring for both your parents while working and being a mother of 4(?)... That really seems exhausting, you have my sympathy! I hope you managed to have some sort of financial help to be a full-time carer or any kind of solution...
I totally understand that you're feeling negative regarding cancer. Besides all the poor experience with NHS, when you receive so many bad news at once it can be devastating. For me it was hard to deal with overly positive people when my boyfriend was being diagnosed and treated...
I do believe that you are strong and that you will sort all this situation the best way possible. It was the women's day a few days ago and we women are indeed amazing.
I'm glad this forum is helping you!

Take care*

Dad given two months to live.

13 Mar 2019 01:49 in response to Chriss

Hey there, 

Thank you so much for such lovely messages guys. I'd be really happy with a mum like you Chrissie. You are beautiful. I knew I wouldn't sleep tonight so I waited to reply. I haven't been here long and so much has happened. I think I'll always feel negative towards the NHS about my dads care. Its been awful and like banging our heads against a brick wall. I'm normally pretty good at sorting things out but I've failed this time. I do have a big positive that's coming from all of this though and that's that I'm getting to spend lots of time with my dad. He's actually asking for me every day, he says to mum " Where's Tracy? Will she be here soon?" Every day! And I just love that it's me he asks for! I am an only child in fairness so there's nobody else for him to ask for but still, I love when my mum tells me that! I'll walk in and he'll say "hello baby girl" He says thank you to me so much I've told him to stop! It means so much to me that I'm the one that makes my parents feel comforted and looked after in all of this. Dad told mum he feels really loved and cared for through all of this and I couldn't ask for more in that sense. I gave up work, I handed my notice in last Friday. Macmillan supported me through that and I'm in the process of claiming benefits which are related to caring for my parents. It may only be for a short time although I'm not sure how it will go with mum when dad goes-I honestly think I'll be on suicide watch or she will end up in a psychiatric unit for some time. But that's in the future, I'm trying not to think too much about that. It's one day at a time. I've repeatedly stressed about mums problems and she's been offered counselling like we all have but its not enough for mum, she's more complex than that. The mental health service we've got is really lacking too. She's very confused but she understands I'm doing my best for them in a really difficult situation. My daughter is still starting uni in a couple of weeks, my son is getting himself together again and catching up on his uni work that he let slip when we first found out. Things are going ok. I have had a virus the last week or more and that's been horrible. It started out chesty but has gone sicky. You know when you're sicky you can't function too well? That's been me! I've been in Tescos breaking out in a sweat thinking "please don't be sick!" I've wondered if it might even be my age, I'm 43 soon so I'm not sure but it does feel more like a bug I think. My twins are doing great, they had 100% attendance in school last term. Lots of things are really good. It really is one day at a time. It's a horrible situation but you do find your way. You get some inner strength you never knew you had and somehow you cope. I do hate everything about this disease and it's everywhere. But the love we all here create to fight it and to support our loved ones and each other is incredible. If love could cure it, it would be a done deal. I'm waffling because I can't sleep but I'm half asleep! I'm really tired but like Chrissie said my brain won't relax for long. It's cold tonight too isn't it? Have you guys noticed how cold it's gone? It's like we've gone back to the middle of winter! My feet are cold and they won't warm up, I tried a hot water bottle I'm going to find a pair of bed socks I think! Lots of love and hugs, I hope you're all sleeping! Xxxxxxxx

Dad given two months to live.

13 Mar 2019 01:52 in response to MiGi

And this goes without saying I know but you guys are the best and I appreciate you and every word of your gorgeous messages more than you know. Thank you. Xxxxxxxxx

Dad given two months to live.

14 Mar 2019 12:08 in response to MiGi

Hi I've just seen your post idont know what hospital yours is but my wife had to go in last year itook her in she is in a wheelchair our own I asked the nurses if I could stay with her they said OK I was there from6.30a m to 9at night I had 1/2 hour for dinner she was in for 6 days I fed her took her to the toilet washed her nurses didn't mind I was. Making their job easier. I've been doing it for years anyway I'd not like the bed it was nearly a meter off the floor and wife is only 4foot 10 we managed.sorry to hear about your dad have they got it right this time round. Is your mum managing OK. 

Billy

P.s a lot of hospitals have a apecial room for people like your dad where they can stay together i think you have to pay though it might be worth checking. 

Dad given two months to live.

21 Mar 2019 02:32 in response to Billygoat

Hi @Billygoat ‍ 

Hi there! 

It's nice to hear from you-how are you doing? 

With dad it's been really hit and miss since his diagnosis. We're in South Wales. Dads at home, he wants to die at home, so we're doing our best to look after him ourselves but it's been quite difficult especially the last few days. Dad could go into a hospice but I know that is something he really doesn't want, he's scared and wants to be with us. We're really happy to look after him, we just feel like we can't look after him as well as we would like to because we haven't had any support or much guidance really. We've given up asking now to be honest although Marie Curie are due to give us a call to discuss help for dad and us so maybe.....finally! Xxxxxx

Dad given two months to live.

21 Mar 2019 07:36 in response to MiGi

Hi there hunny ...

You know so much has been happening on here, so so many having a tough time, l forgot to see how you are now ... I'm so sorry ... 

There's been so much on here about lack of help for those like you at this hardest part of the journey .. l volunteered for McMillan in my area and saw how they worked behind the sceans to coordinate us to visit cancer patients (before l got diagnosed) and I also took those who didn't have transport to to chemo or other treatments ...  

It breaks my heart to see the posts now on how they are failing ... l just wish someone from there could read these and see where things need to change ... they were life savers when my brother in law was at end of life cancer ...  l will try to contact someone there and see if there's anything they can do ... but I'm just me, l dont know if or what can come from this ... but will let you know ..

One thing I've learned while here is Marie Currie seem to fill that gap, and really do try to help those at end of life .. though they seem to get less publicity. . Their home page is really good .. and I've had great feed back from others that have called them ... 

This is a heartbraking situation all round ... cancer sucks ... Chrissie xx

Dad given two months to live.

21 Mar 2019 07:49 in response to MiGi

Well on a personal level MiGi ... you know l felt really emotional reading how your dad is so loving to you .. it's sometimes just a bit of kindness that can move mountains ... what you've done for him now, will mean so much to this last journey he's walking ... he's got you right there by his side ... and your both holding on to mum too .. 

I remember my mum was always telling me how wonderful I was in those last year's .. she was always with us, even on holidays .. but I kept telling her, she'd been my pillow when I cried .. my best friend over the years ... and the most wonderfull nanny l could have wished for .. l could have never done enough to pay her back .. as I've said so many times she  went with a heart attack and no warning ... but you know it would have been even harder to see her go through what your dad and many others are going through now ...

I don't know how you are still so strong ... maybe adrenaline keeps you going day by day .. to just get through one more day .. I'm sure if there are angels down here, your one of them ... l just hope Marie Currie come through, where others have let you down ... 

I really wish I could give you a real hug and not a vertual one ... but if you feel an arm round your shoulder right now, that's me ...  Chrissie ❤❤

 

Dad given two months to live.

30 May 2019 06:08 in response to Chriss

Hi Chrissie (and everyone here!) 

I need to apologise for not being here for a while. I've been thinking of you guys and I've wanted to click on so many times (as you know I don't sleep anymore!!) to say hello and to see if everyone's ok or if I could help anyone. The reason I haven't is because I didn't want to tell people what has been happening and make anyone feel helpless like we do because I've learned the past few months that hope and determination are so important in this fight. I didn't want to say anything more that would take that away from anybody because it's not fair. People read our words and look for help and comfort and I didn't feel I could help or comfort anybody if I was being honest with myself lately and by sharing what was happening I wasn't sure if it might make people give up hope or just accept that that's how it is when you're diagnosed. People also come here for the truth and an honest answer from us because they trust us and we are going through it. I didn't want to share bad things but didn't have anything good or positive to give which is awful! I always find the positives in everything and to be faced with none is pretty hard to take. I want to jump up and down and say "oh, try this! Try that! We did this and it worked!" Etc etc... But we haven't had that experience to be able to say that. Through my daughters medical training I've realised too that the way dads been treated is appalling. Even going back as far as the nurses who "looked after" him at the point of diagnosis. I can name two that should have been struck off for what they did. That's from an objective point of view without letting personal feelings get in the way. Let alone the wasted appointments with others. 

So fast forward four months. My dad recovered quite well after they finally agreed to review his medication. He's done really well. Back to chatting and eating and wandering about. He's much better than he was. After four months of begging for treatment to at least TRY to prolong his life they've finally agreed last week. My dad decided enough was enough of us constantly being fobbed off and he demanded himself that they do something to help rather than just filling him up with pain killers. He's having a scan to see how the cancer is progressing and he's being tested to see if he will tolerate anti cancer drugs. But my dad had to get out of his wheel chair walk into the consultants room and beg for that after being kept waiting nearly three hours (they were running late for appointments that day and had forgotten he was coming so he wasn't on the list despite us taking the appointment letter with us!) 

Its a positive step and I'm glad I have something good to write here because it's been a long time coming! And if dad hadn't created a fuss he wouldn't have even been seen that day let alone anything else. We've tried to get him help and we've failed. I've tried to explain to the people dealing with my parents that they're a bit autistic and mum has mental health problems but they continually ignore this and push mum to breaking point, usually when I'm not there to step in. The physio therapist never came back, the nutritionist said its normal to not eat, don't worry?! They forced him to sign a DNR form. All sorts of things. 

I know you'll wonder how I'm doing and I'm ok! My son has just finished his law exams so he's coming home to live very soon and I can't wait! My boy only lives five minutes away and I see him all the time BUT to have him home just knowing he's here until September is so precious and I am looking forward to it so much. My daughter is doing really well with her student nurse training. She's very happy, she's still at home because she's in the hospital near us. My little girls are delightful! Being a bit temperamental at times but there's a lot going on so that could explain it. Plus I bought a computer but could only afford one so they're having to share it and they don't like to! Generally though they're all amazing. I'm looking after myself too as always! Lots of bubble baths, face masks, I fake tan, make an effort as much as possible to wear a nice outfit and at least a little bit of makeup, anything to just make me feel able to face everybody. It's a bit of a front but it does help. Just the routine of moisturising and putting on makeup is a distraction and five minutes for myself. It's almost therapeutic in a way and I don't know how you guys feel but if I feel I look half decent I feel stronger somehow to go out the front door and deal with life. 

we had a lovely family day out recently to the zoo (my eldest two came along too and it was so lovely!) The five of us went for a long walk around the lakes on the weekend. We are just doing what you do and being a family. 

My dad keeps thanking me for everything I do and mum thanks me everyday. They've told me that I make life so much easier for them and they couldn't manage without me. I think in this situation if they can say that to me still after four months we must be doing ok! 

I can feel the hugs and the warmth, and I am sending it right back too. I hope hope hope hope everyone is doing ok and please if anyone new is reading any of my story don't let it affect you in a negative way. Everyone's experience of cancer, treatment, the NHS is different. We have just been unfortunate but it is just one story. There are many others who have had a positive experience and are recovering right now! So just take it for what it is, one persons story. 

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

 

 

 

Dad given two months to live.

30 May 2019 08:01 in response to MiGi

Hi migi welcome back we all just wish it was in better sercomstances it unbelievable how much trouble you've had with the hospital. at least it seems sorted now, , fingers crossed,, it's nice to hear your father is feeling a bit better now, it should have been sorted ages ago, hope you are still looking after yourself as well, good wishes,

Billy 

Dad given two months to live.

30 May 2019 09:22 in response to MiGi

Welcome back Happy

Dad given two months to live.

30 May 2019 10:13 in response to davek

Hi there!!

Thank you guys. I really hope everyone is ok here. I have missed you. What a roller coaster this "journey" is hey. 

Xxxxxxxxxxxxxxxxxx

Dad given two months to live.

1 Jun 2019 10:25 in response to MiGi

Hi MiGi

Good to see you back, in a weird sort of way! I’ve been thinking of you and wondering how things were going for you. I’m so sorry about the way your dad has been treated, but am continually amazed by how you deal with everything that’s going on, and how you help others despite your own circumstances. Take care. xxxx