Dad is coughing up black lumps of blood, awaiting results, absolutely terrified. [Archive]

JValentine

27-04-21, 18:37

Hi all,

My dad has Alpha 1 lung disease, a nasty disease that makes his lungs fill with fluid and it will eventually kill him. He has about 3-5 years left. He's 67.

For 3 months, every week or two he coughs up small black clumps of blood. His shortness of breath (hopefully from his COPD) is so bad he has to lie down after climbing the stairs. He can walk miles if it's flat, up, no.

He managed to get in at his docs and they urgently referred him, today he has a a CT scan and on Tuesday he will have camera into the lungs.

The consultant said I don't think it's cancer, as you have no other symptoms whatsoever. No weight loss, no chest pain, no night sweats, nothing, he feels fine in himself apart from the cough and shortness of breath. She said she has a list of things she has to rule out, it could be asbestos related, which is also terrifying. I am hoping and praying it's just his COPD.

I have lost the plot today.

Does anyone have any experience? Or reassurance? Can't say anything here as don't want to worry my son

Help :'(

Carys

27-04-21, 20:59

Sorry to hear of this awful worry, I think it might be really hard to find anyone with experience of this exact situation as it seems very individual based on your Dad's health. Clearly he has things that do have to be ruled out, so its only really the medics who can help with finding out the cause and they who can give you accurate and realistic information. I know its terrifically hard waiting on these hospital tests and being in the dark about the cause of your Dad's symptoms, which are clearly not normal and must be concerning for you. How old is your son ? Most children can hear things like this in an age-appropriate way, tailored to their level of understanding. I just wonder if it would be easier for you to not have to 'keep things in'. The facts are that your Dad is having some tests done to find out what is causing his problem, the worries about cancer are worries you have only at the moment, so your boy wouldn't need to know those. If your Dad does need treatment then for most children its easier to hear things as they go along sequentially, and process them bit by bit rather than have to face it all in one go. If it turns out to be nothing of concern after all the tests, then he was honestly communicated with and sees the positive end result, if it is something that needs treatment then he can then hear about that.

I know a little about COPD as have worked with a few people with it, so I know that coughing blood can be a less common symptom of the lung condition, but of course it can also be from other problems so it is really good that the medics are working at checking everything out. In situations like this, no amount of fear or worrying will make any difference and the best thing you can do is to reiterate to yourself that no matter what the outcome is, there are good medical teams who will treat anything diagnosed. You can and will face it, hopefully the 'it' will just be the COPD, or a chest infection, but even if the 'it' was something else as a family you will be strong enough to deal with it. Terror is something that strikes when you are in the dark (emotionally) and have no answers, once there are answers and plans terror diminishes and people get on with anything that needs to be done. What I'm trying to say is that the waiting and thinking now will be the worst part for you, over the next few days, and things don't stay at this fear level.

JValentine

27-04-21, 21:24

Hello there,

Thank you so so much for your lovely reply.

My son is 16. He lost a Nan to cancer a couple of years ago.

My Dad is feeling much more positive after being so well looked after by the top lung surgeon at our hospital.

I completely understand and agree that children will take things better bit by bit than rather in one go. He knows his grandads lungs are worse and he is seeing specialists. I will keep him informed, I just don't want to cause him any unnecessary worry, I desperately don't want him to end up like me :(

The consultant said 'I am going to eliminate all these things it could be and give you a much better quality of life I sincerely hope that is the case.

I have been through family members with cancer and their deaths.

I know I can come through anything, I just really don't want to lose my dad yet. But that's not even set in stone yet is it!

Thank you so much xx

Carys

27-04-21, 21:36

He knows his grandads lungs are worse and he is seeing specialists. I will keep him informed, I just don't want to cause him any unnecessary worry

Oh thats good then, he knows, I thought you'd kept it all from him. Then all you need to do is talk in facts, and the 'knowns', not the unknowns - but I guess at 16 if he asks more detailed questions then you will need to be honest without being panicky. The consultant sounds great, and you have the relief of knowing that your Dad is in good hands and they will give him all care possible for the remaining years of his life. Come Tuesday you will know a little better what is happening, and as you say you will get through no matter what. I do apologise, I just re-read your original post and for some reason I didn't connect with the 'Alpha 1' lung condition - I've just looked it up and see that it is terminal, but its a case of managing it as well as possible for the remainder of life. Does COPD come from the Alpha 1 ? I'm sorry I really have nothing that is particularly helpful to say, but as someone who lost her father this year from years of a terminal illness, I know how hard it is waiting, watching and worrying all the time.

Carys

27-04-21, 21:39

I hope you don't find this patronising, and I should think almost certainly you are in touch with this UK body, but wondering if they might be able to give more support and advice that you need ?

https://www.alpha1.uk/

JValentine

27-04-21, 21:56

Hi :)

Yes Alpha 1 Antitrypsin deficiency causes chronic COPD. Shortness of breath etc. His mother effectively drowned in her own lungs. Its hereditary, I am the eldest of 4 children and luckily, we did not inherit it. Our mothers genes saved us!

Yes I often frequent the Alpha 1 site thank you, my dad sticks his head in the sand! 2 of his sisters have/had it, and some of my cousins inherited it also. We are in our 30s. Very unfair. Not patronising :)

Just praying and hoping for good news.

I certainly feel better about it now. Thank you x

Carys

27-04-21, 22:09

Well, I'm not sure I've done anything much to help, except I hope you don't feel as alone. I will check in on any updates you make and am always happy to carry on talking on here. Your family have been through a lot with so many affected, a horrific genetic condition such as this is a big burden to carry for the sufferer and the family unaffected. I will be hoping for the best news possible for you also. :) Take it easy, this is understandable anxiety, its based on real events and real fears, be kind to yourself and feel whatever you need to feel - cry, be angry, be upset, be hopeful - make space to think and do some relaxation techniques.

JValentine

27-04-21, 22:21

Thank you ❤

I will update. I appreciate you taking the time to reply x

pulisa

28-04-21, 08:32

JValentine

28-04-21, 09:34

I can't add anything at all helpful here..Just wanted to say that I admire your bravery and strength in dealing with what must be a horrendously worrying situation.

Waiting for results is the worst bit, as Carys says. Please keep writing on here if it helps you in any small way.

I hope your Dad is comfortable and reassured by being under the top lung doctor who wants to do his very best for him.

Hoping for some better news today. Please look after yourself.

Good morning,

Many thanks for your kind message.

I feel better about the whole thing this morning. Trying to be rational and not waste my days waiting full of anxiety unable to function!

I will update when I know more.

Huge thanks x

Carys

28-04-21, 09:43

Hiyer,

Its funny you've reminded me of myself as I'm quite like you nowadays with my response to things - I didn't used to be in my younger years. I now go through a day of fear, panic and terror about certain important and serious things, then process it during that terror and feel 'settled'. I don't mean that I'm happy about a situation, but it doesn't consume me and I am accepting in a way I wasn't able to many years ago. Accepting is an easier place to be, and certainly for me I can't reach that without doing through the 'being terrified', if that makes sense. Anyway, glad you are coping ok today :)

pulisa

28-04-21, 17:55

I'm the same, Carys..It's almost as if you make peace with the "being terrified" bit, make a plan as to how to manage it and carry on having confronted the fear and accepted it.

We all have our "ways"...Hoping that your dad has had a better day and is stable.

JValentine

29-04-21, 08:58

Morning both,

Thank you.

He hasn't heard from his consultant and she said if anything nasty was found she would call him immediately. He had the CT on Tuesday and it take 1-2 days so we are hoping and praying that no news is good news and she doesn't call today.

I was fine all day yesterday but found my heart racing all night and I'm sat at work now and my heart rate is 120!

Like subconscious anxiety?!

Trying to calm it down.

Will keep you posted xx

BlueIris

29-04-21, 09:10

Thinking of you; hope it all works out as well as possible.

pulisa

29-04-21, 09:11

I'm not surprised that you're on high alert. Try not to monitor your heart rate though..you just don't need the hassle.

I'm sure his CT will have been fasttracked by the radiographers to the consultant for assessment. It's horrible when you are wanting the phone NOT to ring. It will be a long day..Being at work may help to distract you a bit though.

Good luck for today and here's hoping that there's no phone call.

JValentine

29-04-21, 10:00

Thank you both so much.

We think she would have called Tuesday afternoon. I know in the past when there has been a problem I have been contacted on same day. She said she would call immediately but hasn't.

Today he has received a follow up appointment for 18th May. Just hoping its a routine follow up??! They wouldn't make him wait this long if it was bad bad news??

Thanks so much for messaging x

Carys

29-04-21, 10:23

Oh its so hard, trying to analyse and second-guess the NHS system. At their end its just admin, letters and formalities/appointment making and all the known facts, at the end of the worried patient/family every single second has meaning or potential meaning. 18th May does seem a long time to wait if it's something really urgent doesn't it, and I would be thinking the same as you, and the fact that there has been no 'immediate call', however, really it would be nice to hear something wouldn't it so you could stop analysing and know the facts. Is there no contact that he/you have to call or email ?

As for your heart rate - thats nothing, its to be expected and stress and adrenaline are designed to do that. I've fallen down the 'checking heart rate trap' far too many times in my life, and sometimes still do, but I tell you this is won't go down to normal rates until I stop checking it and sometimes that can take a long time - days. (120 isn't that high anyway)

JValentine

29-04-21, 10:33

Morning,

Thanks for your reply.

I have turned the HR monitor off on my fitbit lol. That will definitely help, and doing my actual job 😅

He has her secretary's number but doesn't want to call, he said they would have called by now. He's not bothered in the slightest. Or so he tells me!

Huge thanks xx

Carys

29-04-21, 10:39

I have turned the HR monitor off on my fitbit lol. That will definitely help, and doing my actual job ��

Ah yes, this is the reason I don't have a fitbit, my family have offered one as a present, as they have had them for years, and then the implications were realised.....:roflmao: I tell you what too - I can honestly just think about my heart being fast for it to be fast. I once tested it with a heart app.

He has her secretary's number but doesn't want to call, he said they would have called by now.

Ahhhaaa, yes, I see.....well, heres the thing....hes not the only one affected is he. Would he call just to put your mind at rest or let you call ? He's more than likely right, and many people would be doing the same as him; its either a choice for 'blissful' ignorance, or head in sand and not wanting to confront, or genuinely thinks its ok. Its tough on you though. Its a difficult one isn't it, to deal with, as its his body and his health.

JValentine

29-04-21, 10:45

Thanks Carys.

Yes he's very headstrong, a man's man and I won't push him. I'll just try to let it all go again. 😊

He has to self isolate from Saturday ready for his camera into the lungs on Tuesday.

Poor thing, sounds so awful.

Xx

pulisa

29-04-21, 12:57

I'm sure he would have heard by now directly from the consultant..I heard within 2 days of mine and it was normal!! Put the fear of God into me though when I saw the call was from the hospital!:D

I think you should let him decide as to what he wants to do if anything re ringing her. He may be quite happy to accept that no call means no worst case scenario. I know that I would think this and wouldn't want to tempt fate by ringing.

He sounds like a very brave man who is dealing with a hell of a lot.

Hope your day is progressing as steadily as possible and that you are coping at work xx

Carys

29-04-21, 13:35

I'll just try to let it all go again. ��

Yes, I think thats for the best, his choice :) The one thing that most people want, particularly when dealing with life-limiting illnesses, is autonomy.

JValentine

29-04-21, 16:07

Hi both,

Thank you, yes I won't push him. I just said "you know you can call the secretary and ask?" And he said I'd have heard by now. So that's that lol.

My day is going much better now, thank you 😊 x

pulisa

29-04-21, 18:11

Good to hear that. He is right about any potential call. He doesn't want you to make him doubt his judgement on this x

JValentine

30-04-21, 19:35

Hi guys,

Just a quick update to say there is no update!

Still no word from his consultant or anyone else. He has his covid test tomorrow and will isolate till his camera on Tuesday.

Will update when I know anything!

Surely no news is good news!!! ❤

pulisa

30-04-21, 19:44

I'm pretty sure it IS good news! I'm very relieved for you and I hope this means you can let down your anxiety guard just a little and relax over the weekend?

He's obviously got more tests to come but at least there is no bad news from the CT which is significant xx

JValentine

30-04-21, 19:53

Well, I spoke to soon.

Dad rung and said the consultant called him today.

She started by saying "now there's nothing to worry about, but your scan shows there's something not quite right. So you are having your bronchoscopy on Tuesday, then I'll bring your appointment forward a week rather than the 18th" she went onto talk about drugs he can have to clear the fluid etc.

What do I make of this?! He reiterated he does not want any of his children to worry and assures me She said not to worry.

What do you think guys?

I said, why didn't you ask what she thought it was?! But he's not like me. I said we're all on tenterhooks here.

I'm not sure what to make of it?

She has brought his appointment forward a week but said not to worry?

Cripes :(

JValentine

30-04-21, 19:56

She won't say not to worry then drop the C bomb surely?!

pulisa

30-04-21, 20:07

Well it's obvious that something's not quite right. I think anyone would worry if they were told they had cancer so nothing to worry about means that nothing very bad has shown up. Maybe she's had a think and can prescribe better meds to clear the fluids? The 11th May is still 2 weeks away-that's a long time for someone with a very urgent problem.

pulisa

30-04-21, 20:08

Would she actually deliver really bad news on the phone? I don't think so. I think she would tell him in person. She hasn't.

JValentine

30-04-21, 20:15

Hi there x

Thank you.

Oh yes, his lungs are in a terrible state. I just desperately don't want him to have to battle Lung C as well as copd.

That's what I was wondering, surely it would be face to face but then she did bring appointment forward, eek.

Just keep telling myself if it was cancer she wouldn't say 'nothing to worry about!'

I'm hoping that bringing his follow up appointment (as they called it) forward is just to sort his poor lungs out. She did say once she has eliminated these awful things she will start on the good drugs!

If it was the big C, I think she would be talking about dealing immediately with that rather than giving him a better quality of life as she says. She was talking about specific drugs to break it all up in there.

Thanks for responding, it really helps me xxx

Carys

30-04-21, 20:21

How frustrating for you ! You know that if you'd have had that conversation you'd have never come off the phone without asking questions.

Do you definitely believe that she did say 'nothing to worry about', and he is being accurate ? If he is trustworthy in that sense, as some people can and would say that to NOT worry their children and try to be 'kind', then I agree that she surely wouldn't have said that if it was 'C' she thought was a possibility. Surely not.

There may be something there, something going on, well clearly there is - but I think all you can do is go with this statement
I'm hoping that bringing his follow up appointment (as they called it) forward is just to sort his poor lungs out.

Fishmanpa

30-04-21, 20:34

Just from my personal experience, they didn't pull any punches. I always say, "It's not cancer until they say it it's cancer". That said, my doctors told me flat out they suspected it, thus the additional testing and appointments with specialists. Again, based on my personal experience, if I were told not to worry, I would have breathed a sigh of relief.

FMP

JValentine

30-04-21, 20:52

Hi FMP,

Thank you for replying. Exactly, can't see it being malignant if she said not to worry.

I have spoken to my mum and she said if it looked like cancer she would have said straight up, it could be serious, I need you to come in etc. He has a bronchoscopy booked which was booked from his appointment on Tuesday. She needs it done to eliminate xyz

And then she goes on to talk about a specific drug to help his alpha 1, can't see her doing that if it was cancer, that would be the immediate treatment, surely?

Hi Carys,

I actually said to him "you're not saying not to worry rather than the doc?" and he said no, no way. He's as straight as they come and hates liers so I can't see him lying to me.

Thanks again xx

Carys

30-04-21, 20:55

I actually said to him "you're not saying not to worry rather than the doc?" and he said no, no way. He's as straight as they come and hates liers so I can't see him lying to me.

Excellent, then I think you can presume at this point that the 'something' isn't the 'C something' that you fear.

pulisa

30-04-21, 20:55

The consultant wants to treat his alpha 1 as best she can and as quickly as possible. There has been no mention of an oncology referral.

Fishmanpa

30-04-21, 21:05

Hi FMP,

Thank you for replying. Exactly, can't see it being malignant if she said not to worry.

I have spoken to my mum and she said if it looked like cancer she would have said straight up, it could be serious, I need you to come in etc. He has a bronchoscopy booked which was booked from his appointment on Tuesday. She needs it done to eliminate xyz

And then she goes on to talk about a specific drug to help his alpha 1, can't see her doing that if it was cancer, that would be the immediate treatment, surely?

Exactly.... That's not to say that his illness hasn't progressed, but cancer? As long as he's had these issues, they would have been up front. As my GP said to me when I complained about the number of prescription meds I'm on for my physical issues... 'just be thankful we live in a time where a little pill can prolong and improve our quality of life'.

Let's hope one more 'little pill' can address the current issues and improve and prolong his life ;)

FMP

JValentine

30-04-21, 21:07

Hi both,

Thank you, yes she did not mention an oncology referral whatsoever.

I know his lungs are in a bad way, but she has promised him a better quality of life once cancer has been ruled out. She does specialise in lung cancer (as well as other areas) and would have seen it plain as day on ct scan.

She isn't in the business of hiding diagnoses I'd imagine! :)

I will be SO BLOOMIN RELIEVED once I hear the all clear. :)

Thanks guys for talking to me. You don't know how much I appreciate it x

JValentine

30-04-21, 21:08

Thanks FMP

Oh yes, he disease has progressed definitely. But he's been relying on inhalers and needs a step up in care now.

Thank you, I really hope that too ❤

JValentine

04-05-21, 17:00

Hi all,

Little update.

Dad had his bronchoscopy today, he didn't want sedation so it was really quite unpleasant bless him.

Any who, the doctor (who was another lung consultant there) said have you been told your ct scan results, not really he said, so she said you have signs of emphysema (obviously) and shadowing on the lungs. So we need to rule out cancer, as his other doctor said.

She started the procedure and took 6 biopsies, she wanted to take a lot as it will give her much better view of the state of his lungs. She moved down deeper and said I want to check something? (He couldn't remember what) and she checked and said she was happy with that. They said he was a model patient.

She then said she will have the results of these biopsies on Thursday and will meet with his other consultant to discuss and plan what they are going to do and the other consultant will meet him on Tuesday.

She then went on to say you can bring someone with you on Tuesday as 4 ears are better than 2.

Christ alive. 😞😞😞

My mum had shadows on the lungs and terrified her saying it could be cancer, turned out it was emphysema. But that was off only a CT Scan. I know lots of people who have had shadows on lungs and been fine.

Any ideas what this all means guys?

I know he needs a treatment plan for his alpha 1. But letting him bring his partner? 😭

Dad watched it on the screen and said he didn't see any lumps of any sort. Not that he's a doctor of course.

I have been in a terrible state all day and not feeling much better now!

JValentine

05-05-21, 09:10

I am desperately trying to rationalise this.

They havent said, look, we suspect its cancer, they've said we need to rule it out.

Worrying is keeping me very busy doing nothing :(

It's not cancer until they say it is.

Just let it go woman!

BlueIris

05-05-21, 09:42

Not a lot I can say, but my father also suffers from a severe lung condition (pulmonary fibrosis), and while it's early days yet I still worry.

Sending all my good wishes your way.

JValentine

05-05-21, 10:03

Thank you kindly BlueIris xx same to you. Xx

Carys

05-05-21, 17:46

I'm sorry, I can sense your mind working overtime through your posts and the fear behind it. You really are going round in circles, with as yet no information. I wouldn't put much analysis into the fact that they said someone else can go with your Dad, as part of that could be because of the COVID restrictions in the past, and they are now saying that its fine to bring someone else -making it clear that he can bring some support. Cancer aside - what your Dad has is a complex condition/set of conditions, and the further treatment of that (given that this is essentially a terminal illness) would certainly make any consultant view the support of a family as important at any consultations.

I don't know what to say about the Cancer, as I wouldn't want to raise your hopes, or give false impressions either way - you are there on the frontline and hearing more than we are, so feels wrong to say anything either way. Biopsies are biopsies and only they tell the true story, and I should think that even the consultant didn't have the information when last speaking to your Dad.

pulisa

05-05-21, 18:03

I agree with Carys about your mind working overtime but this is to be expected in such an uncertain situation as waiting for biopsy results.

Worrying won't change the results which have already been determined...I know that's no help to you of course but you're not dealing with fact here, "just" fear which is bad enough.

The days must seem endless..Is there anything you can do to distract yourself or is the anxiety 24/7? xx

JValentine

05-05-21, 19:44

Hi both,

Thanks for replying again.

I have seen my dad tonight and done his accounts lol. He is feeling absolutely fine from his procedure and I feel better for seeing him.

I refuse to give into this fear anymore. I don't want to look back on Tuesday and realise that I wasted a whole week worrying!!

Pulisa, I work full time and have a busy home so I'm ok, lots to keep busy with. It's so horrible to be thinking of it whilst trying to go to sleep and the first thing that pops in your head when you wake up!

But, not anymore. I am letting go of the what if. Make the most of every day.

Thanks again, I will update when I know anything x

Carys

05-05-21, 20:23

Good plan, great strength of spirit to be able to say those things, but don't be surprised if you still have ups and downs anyway. Focus on the living, what will be will be (I know its so hard to hear that) and if you can get through this with your courage and emotional strength intact it will help your Dad - whatever his appointment brings. I think saying to yourself 'no matter what this appointment brings, I will be there for my Dad, love my Dad and support him' can be empowering, because that fact can never be removed or changed.

JValentine

05-05-21, 21:13

Oh Carys you made me cry 😢

That is beautiful and so true.

Thank you so much x

Carys

05-05-21, 21:50

Oh bless you. x

pulisa

10-05-21, 19:57

Keeping fingers tightly crossed for the appointment with the consultants tomorrow...:hugs:

JValentine

11-05-21, 09:15

Morning!

Thanks so much for thinking of me.

His appointment is 11.45am. So hopefully by 12.30 I will know whats going on.

Will update x

JValentine

11-05-21, 13:09

Lung cancer, bottom of right lung, spread to liver, tiny dots on liver.

I am broken

BlueIris

11-05-21, 13:35

I'm so very sorry. Will be keeping you in my thoughts.

pulisa

11-05-21, 13:38

Lung cancer, bottom of right lung, spread to liver, tiny dots on liver.

I am broken

I am so sorry to hear this...but you are not broken. You are still there for your Dad who will need you now more than ever..How has he taken the news? How is he?:hugs:

JValentine

11-05-21, 14:15

I'm so very sorry. Will be keeping you in my thoughts.

Thanks Blueiris x

I am so sorry to hear this...but you are not broken. You are still there for your Dad who will need you now more than ever..How has he taken the news? How is he?:hugs:

Taken it superbly. Macmillan nurse was there ready to support and he said "I was 80% sure I had it anyway. No point breaking down. I have never backed down from anything, I will take the treatment and still be here in 3 years!"

They said its not curable but it is treatable. I don't know the stage or if its aggressive. They were insistent it is treatable?

They are waiting for the rest of the results of the biopsies and oncology will see him in a month! A whole month?! So he thinks it's not that bad if they are happy for him to wait that long. They will know what treatment would be best for him by then.

I have 3 younger brothers and 1 is disabled but very able. Mum (separated) is telling him now, dad can't bring himself to tell him 😭 my middle brother couldn't even speak on phone. Very upset. My bigger brother finishes work at 5 then dad will tell him. We're all pretty young and im feeling a bit cheated.

That's life though hey.

pulisa

11-05-21, 14:27

Your dad is a strong and brave man. It's treatable and that's the thing to focus on. Of course your brothers are going to be very shocked and distressed but your dad is in control of this and has obviously steeled himself for news like this.

Don't write him off. He sounds to me as though he's determined to keep going and take whatever treatment is offered in order to be there for you all for as long as possible. He's not broken..not by a long way. You aren't either.:hugs:

JValentine

11-05-21, 14:35

I'm certainly feeling very broken. The whole world upside down thing.

Oh god i've got to tell my son 😭

I just hope he can live with it for a few years yet. Yes he certainly is. They said they won't give him chemo, etc if he is not fit and well. He has nailed the mental strength part of theat so just the physical now.

Carys

11-05-21, 15:54

I am so dreadfully awfully sorry to hear this, this is not the news that any of you wanted and how desperately 'unfair' for him to face the cancer along with the lung condition he already has. Cancer does feel like it turns the world upside down, but after the shock settles, after a few days, you will find the strength and resources within yourself to focus on the treatment plan he has and the living to be done. If it helps you to know, I have known people with secondary cancers (lung and liver both, which started in breast) who have lived a quality life for 3/4 years plus, actually longer, with oral chemo regimes. Theirs was also not curable, but treatable. You will have so much support from MacMillan as a family, and the NHS will be truly wonderful every step of the way, I have no doubt of that. Your Dad is fantastic, what a man, showing the way with the gift of positivity and courage he has, you will stand beside him on this journey, it will bring you closer together honestly. I say this to you now as somebody who had the priviledge of sharing the years of a terminal illness with my Dad, we had some of the best times in my life together during that period, we laughed the most and loved the most. You will too. You will feel broken today, thats ok, but tomorrow is a new day and your Dad will be here and you will process this slowly and come through it.

(I have actually shed a tear for you this afternoon - a stranger whose path has just crossed on an anonymous forum.)

Scass

11-05-21, 15:55

I’ve kept up with your thread but not commented. Really sorry about the diagnosis. Wishing you strength and courage. You can do this, he’s bought you up well.

Sent from my iPhone using Tapatalk

JValentine

11-05-21, 17:03

Hi Carys,

❤ Bless you, I have shed so many tears today I had no idea where the water is still coming from!

Thank you so very much for your wise words. Crying again.

I'll step up and stand with him through this. As I've always done with all my family. I am dreading seeing him poorly, with no hair etc. Not sure how ill be able to handle that, don't want him to see me sad etc. I'll cross that bridge when I come to it.

That is lovely to hear about people you know living 3-4 years plus. I truly hope Dad is the same.

Thanks for being with me through this. ❤

JValentine

11-05-21, 17:04

Thanks Scass. He certainly has.

I am the female version of him in many respects. I look just like him whereas my brother are like our mum. I walk past photos of us in my house and stop and think for a bit. I don't want to imagine a world without him in it. Anywho, rambling now. Thanks again x

Fishmanpa

11-05-21, 17:39

pulisa

11-05-21, 17:53

I'm sure that you are very much like your dad both physically and mentally. Remember that he has psyched himself up for this whereas for you it's a terrible shock. You'll find the words to tell your son somehow.

I'm sure you'll find out more about his treatment plan when you are ready..but you need to look after yourself now :hugs:

JValentine

11-05-21, 19:33

Sorry to hear this J.... It's encouraging that it's treatable though. I have a friend in a similar situation and treatment has given her many more years so far and a decent quality of life. Keeping you and yours in....

Positive thoughts

Thank you FMP ❤

I'm sure that you are very much like your dad both physically and mentally. Remember that he has psyched himself up for this whereas for you it's a terrible shock. You'll find the words to tell your son somehow.

I'm sure you'll find out more about his treatment plan when you are ready..but you need to look after yourself now :hugs:

Hi there, told my son, was upfront and honest. He took it well but was quite angry. He has already lost a nan to cancer the poor thing. As have many others unfortunately.

Thanks again x

pulisa

12-05-21, 13:51

It's a stupid question but how are you feeling today, JV?

JValentine

12-05-21, 15:51

It's a stupid question but how are you feeling today, JV?

Hi there, certainly better than yesterday. I'm at work, getting on with things. I think I feel some sort of acceptance now. The shock and extreme sadness have alleviated a bit. Just got to get on with things.

Thanks so much for asking. X

Scass

12-05-21, 16:14

I suppose at least now you have a plan and your Dad will be getting treatment.

It sounds like you have a great family and are all very supportive of each other. X

Sent from my iPhone using Tapatalk

pulisa

12-05-21, 17:45

I'm glad you have work to occupy you at least for a bit of the day. I think focusing on the treatment plan is very important as Scass says. I'm sure it must all seem very unreal though at the moment..xx

JValentine

12-05-21, 20:25

I suppose at least now you have a plan and your Dad will be getting treatment.

It sounds like you have a great family and are all very supportive of each other. X

Sent from my iPhone using Tapatalk

Hi there, he won't hear nothing for a whole month. Oncology will call for him in 1 month!! His biopsies are in Italy, having various chemos thrown at them to see which one works. A whole month.

Thank you we are very close x

I'm glad you have work to occupy you at least for a bit of the day. I think focusing on the treatment plan is very important as Scass says. I'm sure it must all seem very unreal though at the moment..xx

So strange, I told my line manager and HR today, they have been very kind. Free counselling which I will certainly need x

pulisa

12-05-21, 20:40

Take as much support as is offered, both practical and emotional. Whatever helps in any small way.

One month must seem like an age but if the experts can tailor the chemo to treat the lesion in the most effective way then the wait must surely be justified? Rather than have a "broad spectrum" approach with a "wait and see"criteria? x

JValentine

12-05-21, 22:05

Hi Pulisa,

Yes I agree, don't want him to suffer chemo unnecessarily, praying they find a good match. On the other hand I don't want it to get any worse! I trust in the doctors though x

Carys

13-05-21, 11:04

pulisa

13-05-21, 13:46

Yes I think you should ask the MacMillan nurses as many questions as you need to because they will have the answers and will be readily available.

I hope you are managing at work and that things are not too overwhelming for you at home. You must be exhausted xx

Carys

18-05-21, 21:52

How are things with you and your family JV ?

JValentine

20-05-21, 21:53

Hiyer J,

Its really good that they are sending the biopsies off for really specialist matches to chemo. I think, NICE guidelines specify that treatment should start within 2 months of diagnosis (though I agree it sounds and feels like a long time when it is your family member waiting), but of course you can ask any questions you have of the MacM nurses. I'm glad you are bearing up x

Thanks for that Carys ❤

Yes I think you should ask the MacMillan nurses as many questions as you need to because they will have the answers and will be readily available.

I hope you are managing at work and that things are not too overwhelming for you at home. You must be exhausted xx

Yes I'm doing OK to be honest. Dad is carrying on as normal and we are viewing the whole thing as he will live with this cancer and that (hopefully) it won't kill him in 6 months, he will live with this for a few years. A lot of people at work have friends and family who were told not curable but treatable and are still here 4-10 years later. X

How are things with you and your family JV ?

We're doing OK thanks Carys. Getting on with life really. I'm very touched you thought of me ❤ xxx

pulisa

21-05-21, 08:08

You've all got a great attitude to the diagnosis but I'm sure it can't be easy for you. I hope you soon get some definitive news about the chemo treatment and that the Italian doctors are able to identify what will work best for your dad. He does sound like an incredibly strong man who is getting on with his life and taking things one step at a time.

Take care, JV and please write on here if you need us in any way xx

JValentine

21-05-21, 08:54

JValentine

21-05-21, 18:14

Dad just called, his oncology doctors secretary called today asking dad to go in Tuesday for an appointment.

She said make sure you bring someone with you.

😞 more blimmin worry. Really hope they aren't going to go back on their it's treatable diagnosis!

They wouldn't do that would they?

pulisa

21-05-21, 19:48

JValentine

21-05-21, 21:54

They could have got some definitive news re the type of treatment that has been chosen for him so they will start sooner than expected?

Obviously it's all the unknown which is terribly stressful but try not to assume that he will be getting bad news? It would be wrong of them to have given you false hope when you first heard the results. What did your dad say?

Hi Pulisa, thanks for replying.

I actually chatted to a macmillan nurse online and she said they give a few weeks/month to come up with a treatment plan and get all results in. So being called early usually means its because they have all the information they need and are ready to take the next steps. Not necessarily good or bad. I told dad this and he said I was a darling 🥲

So I am relieved for now.

Thanks for responding. Xx

pulisa

22-05-21, 08:31

You did really well to talk to a MacMillan nurse because they are the ones with the rational answers. They are on the front line and know how the system works.

I bet your dad was really grateful too...Despite his bravery he must feel very vulnerable and Tuesday must seem like an age away.

I know how hard all the waiting is and I hope the weekend goes quickly for you xx

pulisa

24-05-21, 14:10

Please let us know what is said tomorrow..I hope the weekend wasn't too bad for you x

JValentine

25-05-21, 08:47

Please let us know what is said tomorrow..I hope the weekend wasn't too bad for you x

Morning,

His appointment is at 10. I am so very anxious sat at work. I feel sick.

Trying to get on with work. I will update you. The weekend was ok, everytime a thiught pops in I just say no, not going to engage that. I don't know if that's healthy or not. Need to get on the free counselling at work.

Thanks again x

JValentine

25-05-21, 12:48

His cancer is the size of a small apple in his lung. It's also in his lymph nodes and the small patches on his liver.

He will start radiotherapy on Friday, twice a week, then strong chemo in 2 weeks as well as immunotherapy. He will have 4 months of this then immunotherapy for 2 years.

The oncologist said i can't save you but I can give you 2 years of quality life after the treatment.

I cried and said I'm not ready to lose you Dad and he teared up and said please don't, I'm not ready to lose you kids. 😭😭😭

I've just left work and come home for lunch. Couldn't keep it together there.

He is feeling OK because he was sure they were going to write him off and send him home, like my mother in law.

2 and a bit years is better than nothing I know, but I'm so so so sad

BlueIris

25-05-21, 12:51

I'm so very, very sorry.

At least he has wonderful family like you, though.

pulisa

25-05-21, 13:09

He hasn't been written off, JV..He's been assured of 2 years plus of a quality life and that's a lot of days. He's got a limited prognosis but he's starting treatment sooner than you expected and he's strong and resilient. He wants to be around for you and he will be..

Of course you are sad..but he's not been written off or sent home to die. He's starting treatment to give him that quality of life which you can share with him xx

JValentine

25-05-21, 13:27

JValentine

25-05-21, 13:27

I'm so very, very sorry.

At least he has wonderful family like you, though.

I really appreciate that blueiris thank you x

pulisa

25-05-21, 13:37

Oh yes I know. He thought they were going to write him off. They are willing to spend over £250k on treatment so he is clearly worth a shot. I'm so grateful x

Your dad is worth every penny! They must be confident that treatment will be well worth the expense to give him a good quality of life as opposed to just extending his life without the quality.

Do speak to a MacMillan nurse if you need an expert opinion or if you just need to vent though? You have their support throughout your dad's treatment so you can ask them anything xx

JValentine

25-05-21, 14:51

Your dad is worth every penny! They must be confident that treatment will be well worth the expense to give him a good quality of life as opposed to just extending his life without the quality.

Do speak to a MacMillan nurse if you need an expert opinion or if you just need to vent though? You have their support throughout your dad's treatment so you can ask them anything xx

Oh yes he most certainly is. ❤ they are willing to give him a real good shot at a quality 2 years. Thanks Pulisa xxx

Carys

25-05-21, 18:59

JValentine

25-05-21, 19:32

I'm so sorry JVal, but also very pleased, they have a treatment plan, and sooner and more robust than it could have been. They have confidence that they can keep him at a good level in terms of no more progress/limited progress for the time being and having been there and seen people with similar prognoses - and cancer locations - go on to have more than 2 years (some significantly longer), I think you should have lots of hope. It'll take some time to sink in, everything you have heard, but I bet you anything you have plenty of joyous family time ahead of you.

I never even thought that he could go on longer than their prognosis. Now you have given me a tiny sliver of hope.

He said earlier he doesn't want to die yet. 😭

When I left work when he rang I was driving along and said to myself "I hope a car hits me" I was so low. I would never do such a thing, but my brain was certainly in a bad place.

Thanks Carys for giving me hope x ❤

pulisa

25-05-21, 19:36

Father's Day is coming up soon...not that you need a special day to celebrate your dad..

pulisa

25-05-21, 19:43

Of course you will feel low because this is such a lot to take in and you are mentally exhausted..Your emotions will be all over the place..But I reckon you're very strong like your dad and will be there for him in all respects as he starts his treatment x

Carys

25-05-21, 20:18

I'd be really interested to hear about the Immunotherapy actually, when he gets to that part, as its something I was reading about years ago before it was in more common use.

I never even thought that he could go on longer than their prognosis. Now you have given me a tiny sliver of hope.

Nobody ever really knows do they, how things will go in the future (cancer or no cancer), so I am always someone who likes to stick on the side of hope and thinks that its always possible that people do well and live longer than the original prognosis (but also don't want to give false hope - a fine line isn't it). You will be feeling low, it is a lot to take in, life-changing for your family and a big big deal. There will be times where it doesn't feel real, surreal, but slowly slowly you will come to terms with it and move forward.

JValentine

25-05-21, 20:25

Thank you both ❤

His best mate unbelievably, also has lung cancer and has been having immunotherapy for a couple years now and he has exceeded their prognosis and doing OK.

Yes I've thought about Father's day, he said earlier, you will have to buy me two more Christmas presents! Trying to laugh about it like. This sucks.

I did text him earlier, he's busy tonight lol. And said I will be there every step of the way if you let me. This is not the end. There is always hope when there is nothing left. ❤

pulisa

25-05-21, 20:47

Maybe his best friend going through this at the same time will be a comfort and will strengthen their bond?

Humour can help when you're mentally suffering, strange as that may seem.

Remember that he hasn't been written off and that there IS hope x

JValentine

25-05-21, 20:58

Most definitely. ❤

pulisa

26-05-21, 08:16

I hope you managed to get some decent sleep and that you can find some distraction at work today x

JValentine

26-05-21, 09:30

I hope you managed to get some decent sleep and that you can find some distraction at work today x

Morning, slept like a log, I was utterly exhausted, my poor eyes!

Yep, feeling better in myself.

Thanks for asking xxx

pulisa

26-05-21, 13:31

Keep posting on here when you need to?

Glad you had some restorative sleep...xx

JValentine

05-06-21, 16:22

Pamplemousse

05-06-21, 17:03

Hi all,

Hope everyone is well.

It is so strange what I am feeling. Once a week I just have a terrible day. Today is that day this week. Feeling so incredibly sad and hopeless and nothing I do can snap me out of it. A week ago I spent the whole day full of tears.

Any who, Dad had his first radiotherapy, he had a weeks worth in one dose as they said he could manage it. He suffered a couple days after with burning inside 😭 but is fine now and has another next week and chemo soon.

K xx

Did they tell your Dad to expect that burning feeling? They didn't tell my mother and it was only my knowledge of how this stuff works that let me tell her it was quite normal. It's why people who work on radio transmitters are very careful around them as RF burns puncture deep into the flesh.

pulisa

07-06-21, 08:29

I think you should expect these lows because you are dealing with so much emotional upheaval. Just let it all out..Tears can be therapeutic.

Your dad's treatment must be harsh but he can cope with it so must be strong both physically and mentally.

This must be such a gruelling time for you all xxx

Carys

09-07-21, 20:46

Thinking of you and hoping you are all doing ok.

pulisa

09-07-21, 20:53

Me too..Hope things are as stable as possible.

JValentine

12-01-22, 18:00

Hi all,

I hope you are all OK.

Just wanted to update as I'm feeling a bit low about it all.

Dad's severe treatment, the strongest lung cancer chemo concoction they could give him worked well enough to reduce the lung tumour by more than half.

It went from being apple sized to thin strands wrapped around his bronchial tube. He rarely coughs now and certainly no more blood.

Absolutely fantastic. We were elated.

He then started immunotherapy and after his 2nd he experienced severe shortness of breath. My poor lovely dad cannot even shower now as he faints. He has to have a breather after putting one sock on before he can put the other on.

So, they stopped the immunotherapy.

They then told him that the tiny liver tumour is aggressive and growing fast and is fair bit larger than when this started, oh and there's another little tumour in there growing away.

His hair has grown back and he looks OK. He does not drink anymore and tires easily.

Tomorrow he starts a different chemotherapy, very strong, to try and get the liver tumours under control.

It's going to be very hard they said. Even worse than the last chemo.

I feel INCREDIBLY sad and almost wish that I could take his place.

Please let him have one of my perfect lungs so he can breathe and half my liver! I'll do it!!!

Sorry for rambling, I just wanted to get it off my chest.

This sucks and I feel so sorry for anyone else going through this.

pulisa

12-01-22, 19:50

JValentine

12-01-22, 20:57

Of course you are extremely low and distressed about this and I expect you are incredibly angry too....Your poor dad...but how does he he feel about the different chemo regime? His doctors must reckon that he can cope with it physically?

You must be completely emotionally exhausted but look how well he responded to the lung tumour chemo onslaught. Your dad hasn't given up and neither have his doctors.

Thank you so much for updating us but you need support to cope with this gruelling regime too and you said before that your family are incredibly close and supportive but could you get professional support as well to help you cope with all this trauma?

Hello pulisa, thanks for responding.

Oh so angry still. Yup.

They offered it to him and think he can do it, as I've said before he's hard as nails (he pulled his own rotten teeth out rather than pay his dentist 60 quid a pop ;) ) but the lung treatment has definitely affected him so he has to do things so so slowly.

He says it's got to be done and said straight away we'll do it. He wanted them to zap it with radio but that wasn't an option apparently.

If he can just survive this next onslaught.

I had 6 therapy sessions with work, then the environment became way to toxic. I'd been there 3 months by dad's diagnosis and I left in September.

I could not cope with worrying about dad, looking after my family and working full time with a bunch of obnoxious sexist pigs. I was the only female on our floor and they were vile to me when they actually acknowledged my presence.

So I quit, lost 25k a year and do cleaning now 20 hours a week around family. Mentally I'm a lot better. Worth more than any salary.

Sorry, I digress!

A good friend is a counsellor and I think I'll ask if I can see her for help.

I've spent 8 months just trying to keep my head above water.

I am not writing him off, never. But my mind plays through his funeral, him being in a hospice. Just horrible torturous thoughts and I want to get off!

Xxx

pulisa

13-01-22, 08:45

Good for you for ditching that job! What good is money if you are being treated like that and having to deal with so much distress and trauma in your personal life.

Talk to your friend and see if she can help you? You may feel a sense of relief just being able to let it all out to a friend who knows you but who is also trained to counsel you?

Your dad sounds as if he's up for the fight but it's worse for you having to endure watching him going through it again xxx

Carys

13-01-22, 10:24

Oh my goodness, what a terribly difficult time these last few months have been for you. You are so proactive quitting your (degrading and destructive) role and taking another that has given you more strength during this time, I applaud you for taking all steps you can make life more bearable for you and your family. All you can do at this time is allow your Dad to have autonomy, and follow the advice of the medics. When and if they think there is no more that he should do, or can be done, they will let you know. This doesn't help you watching everything going on and being on an emotional roller-coaster though, and I agree with Pulisa that talking to friends in more detail - getting it out - is the way to go.

JValentine

13-01-22, 14:54

Hello both,

Thanks for responding.

People couldn't believe I was quitting and losing all the money. But I have always been the first to change the status quo if it doesn't feel right.

I suppose I need to sort myself out in this respect lol!

I will definitely message my friend. I became traumatised recently by poor little Arthur labinjo Hughes who was murdered by his "father" and "step mother". I would just cry and cry about it all the time, so angry. It really affected me. I wrote a big post on Facebook about it (I never write on there) saying how loved he was and is and I would have given him the world if I'd had the chance.

She was the first to message saying I'd been traumatised and please pop round and see her. Bless.

Sorry I've rambled again.

Dads currently there, being pumped full of the precious poison.

Praying it works.

I will keep posting.

Take care both xx

pulisa

13-01-22, 20:01

You may be not seeing as much money in your bank account but what you lose in wages you gain in self worth and mental wellbeing and relief in being away from that toxic crowd.

Your friend understands how your emotions are on high alert and wants to help you..

Your dad is so brave to be stoically confronting another chemical onslaught. I hope you get to see him very soon and that the precious cocktail of medication starts to target its enemy with deadly accuracy xxx

JValentine

13-01-22, 20:59

Thank you Pulisa.

I love your last sentence ❤ so do I xx

JValentine

08-10-22, 23:10

Hi all,

I hope you are all well x

A big update. Can't believe it's been 9 months since my last.

My dad is in a very bad way.

The docetaxel chemo destroyed him physically. The strongest he could have. Literally broke his body. He has had no feeling in his extremities since it finished 6 months ago. He is skin and bone and his lungs keep collapsing.

He fell at home 4 weeks ago and now can barely move. He is incredibly frail and using a multitude of assistance equipment at home. Above the pub that they run..helpful..

He is also on morphine for the terrible back pain from the fall. Well, he thinks it's the fall. Praying it is and it's not the cancer.

He's had no treatment whatsoever for 6 months. Liver tumours are smaller and stable but the Lung one needs to be kept in check again soon possibly.

However he isn't strong enough for anymore treatment.

He's just wasting away.

Writing his will.

My eldest brother went to see him today and told us he is dying. He is in good spirits still and said he isn't going anywhere. And I'm praying more than anything he stays with us but his poor body is done. But you can tell I think when you see people. In a few weeks he's really gone downhill. He thinks it's just a bad patch and I'm praying it is.

I'm going to see him tomorrow but I must admit I'm very scared to go.

I do not think I will be able to get through this.

How do you physically and mentally survive watching a parent die and burying them?

pulisa

09-10-22, 08:08

Nobody thinks that they can but they have to because there is no other option and would that parent actually want their child to suffer so much anyway?

Your dad is a very brave man and has endured months of aggressive treatment and horrible pain. He's putting up a front for you and it can't be easy for him. Go and see him for yourself..He'll be so pleased to see you and needs to see you. Writing his will is sensible both for him and for his family. However you find him, he'll be your dad and you will be able to talk openly. You don't need to be brave, you just need to be yourself and his much loved daughter. Just talk to him..

Please let us know how you get on... if you feel you want to, that is?xx

JValentine

09-10-22, 08:25

pulisa

09-10-22, 08:38

Only if you want to...

I'm glad your husband is going with you...Just take things as they come and you can assess how he is for yourself xx

JValentine

09-10-22, 10:03

Yes I do want to.

I'm really struggling and writing here does help a little bit. I really appreciate a stranger talking to me! Not someone I know who can talk to me straight. If you know what I mean.

Getting ready now and I'm just in bits. Hearts racing and I'm dreading it :(

pulisa

09-10-22, 14:26

Of course you are frightened..I certainly was when my mum had cancer. It's terrifying no matter how old you are.

It must have been an incredibly emotional visit but I hope you came away feeling better than you did this morning..

JValentine

09-10-22, 14:32

He is honestly nowhere near as bad as my brother led us to believe.

He is in terrible pain from his back but he has 2 positions he can sit in comfortably.

He has morphine to help.

He is still eating and drinking and getting himself to the toilet with his stick.

He said 2 weeks ago he felt amazing, best he's had in a long time, but he tried to help out and his back went again. So he's going to get the doctor out tomorrow.

I honestly believe once his back heals he will be ok and go back to where he was a few weeks ago.

It broke my heart to see him so fragile but he is without a doubt the strongest human being, physically and mentally that I will ever know. I am beyond proud of him and it has inspired me to try to be strong for him and all my family. Even though inside I am in a bad way.

I feel a lot better for seeing him. He told me about his will and what he's left me and my brothers and his grandchildren. Which worried me a bit but he said he's got no intention of going anywhere. He said he doesn't want to go anywhere. Which made me sad, I know nobody really wants to die but this hurt and I wish I could change what's coming.

Sorry for the ramble.

I'm going to try and be positive for the rest of the day, my eyelids are so sore and swollen from crying so no more.

Have a lovely afternoon all x

pulisa

09-10-22, 18:01

I'm pleased that you were able to see him for yourself and make your own assessment of how things actually are.

I don't think that you need to be always "strong"...Just realistic and able to talk honestly about how you feel. Some days will be easier than others of course.

You're going to feel completely wrung out after the visit so try to have a peaceful evening and well done for what you have achieved today x

Carys

09-10-22, 22:25

Gosh JValentine, 9 months already, I can hardly believe it !

I've read the last few posts, and so glad you went and spent time with your Dad. Thats the best thing to do right now, just be there and be with him. x

JValentine

20-10-22, 11:52

Having a bad day so need to off load.

Dad isn't well at all.

His back pain improved over the weekend with antibiotics and medicine to break up the fluid on his lungs.

However yesterday afternoon he started to feel terrible. Well, his word was sh*t.

His feet are now incredibly swollen and sore.

11 days ago the cancer nurses went out, gave him painkillers and promised him an urgent ct scan and he hasn't heard a thing.

Today he rang then and they said they'd call him back.

For him to tell us, his children, that he feels so bad is very scary.

I am praying with all of my mite that this is a problem they can fix and not a progression of the cancer. As usual my brain is ten steps ahead and thinking is this the beginning of the end.

He is eating and drinking well and is not sleeping in the day or anything. But his body is clearly failing him. His skin comes off with the touch of his dressing gown.

I cannot put in words how much I HATE cancer. You have robbed us of our father and my dad his life.

He said on Sunday he doesn't want to die. Not that many people do but I am struggling with this.

pulisa

20-10-22, 13:58

Of course you're struggling but your dad needs medical attention now and can't afford to wait for those nurses to ring back. Could you contact his GP and say what is happening? He or she may be able to book that CT scan? Alternatively A&E?

It must be awful for you..but he needs to be kept as comfortable as possible and fluid on the lungs needs regular monitoring. I'm not surprised that he feels bad. I really hope he can be seen and assessed today.

JValentine

20-10-22, 15:56

Hello Pulisa x

He is feeling much better from first thing this morning.

He rang the GP who, unbelievably, said someone would call Tuesday!!

Cancer nurses also said you'll have to wait till the oncologist rings as planned on Tuesday.

The occupational therapists were the only ones who said we will do our best to come out today.

He won't let me call anyone and to be fair, he's already tried. The NHS is so broken I am fuming. Thankfully, he is much better.

We cannot physically get him out of the flat through a tiny spiral staircase. The docs know this and dad has demanded an ambulance take him to the scan, but they haven't even booked it. When he went in hospital for his collapsed lung and ambulance needed to get him out the house. And he waited 10 hours for it in terrible pain.

I'll keep you posted x

pulisa

20-10-22, 18:00

Well I'm glad he's better but am appalled by the response or lack of response from his GP and the cancer nurses. Are these McMillan nurses? Can he use their helpline which is meant to be so good around the clock?

Are the nurses planning to visit before Tuesday? Have the occupational therapists worked out a plan to make access to his flat any easier as the ambulance service is so hopeless and you can't rely on them to turn up? xx

JValentine

29-10-22, 19:17

My kind, thoughtful, intelligent, passionate, hardworking, mountain of a father passed away at 4.30pm today.

My brothers and I and other close family had been there since 8am. He told us at 3pm to go home, you've been here all day. I wasn't going to argue with him so we all said our goodbyes and left.

He passed an hour later With his partner by his side, just how he wanted it. He didn't want to put us kids through seeing him die.

He had a double pneumothorax and extensive cancer spread. His mind was willing but his body was not. The sister said in 30 years of nursing I have never seen anyone fight so hard.

I will never be able to pick up the phone again and ask him what he thinks about something. I'll never be able to take the grandkids round to see him. I'll never be able to sit and watch the rugby with him. He won't message me his wordle score every day.

I am taking comfort in that he had no pain and he is in the arms of his mum dad and 2 sisters.

I love you Dad, you were simply the best ❤️