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Thank you and our story... but we are not that far yet!


Dandygal76
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We've all said some pretty shocking stuff to the kids in the heat of the moment, I'm sure...I certainly have. Like you've always said to me, they are pretty resilient and he'll be OK. Great that school are involved...that has made things so much easier for us.


When you say membrane, do you mean in the brain or abdomen?


Chin up lovely...and onwards by all means.


Vx

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I did think along the same way your dad does after my last post because my sister in law lived 5 years after getting brain mets from malignant melanoma after they gave her 6 months. She had some radiotherapy and then did natural therapies, much as your dad has been doing I expect. And I totally get your meltdown. I remember in the hospice when I thought Rob had died in the night the strange sensation of both terror and relief that it was over. What you are going through is so tough particularly because you are fighting so hard! As for your son just say sorry and that you are very sad and don't want to lose your dad and that's why you shouted. Kids understand a lot more about emotions than we give them credit for xx

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DG you will sort your tiredness and your thoughts out and you will be along side your Dad fighting for all your worth again I have every confidence in you. I am beginning to realise that the professionals do not know everything and that hope conquers all. I am thinking of you all and willing you on ....take care

Elaine

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Hi DG


Tough just does not even cut it. PC Family is strong, all wanting and praying for the same outcome. The twists, turns and ups and downs frazzle your brain. You know we are all behind you and never ever put yourself down. It's one of the toughest journey's and we watch our loved ones fight this vile disease with everything they have. We all have melt downs and it's allowed we are only human. Sending you cyber hugs and love xxxx

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Well I made it to work today and normality does make things feel better. My other half is getting fed up with pancreatic cancer as well so I am writing this in stealth and will have a break for a couple of days. I forget sometimes how much this has screwed with people’s lives around me as well. The online community though for support is amazing - You have all been so supportive.


When they say rollercoaster they were not half joking. My dad gave me a funny little wave when I left the hospital on Tuesday. I just looked back as I walked out the ward and he just lifted his hand and wiggled his fingers and he looked very sad. I got home and said to my partner I felt like this little wiggle was saying a final goodbye. I did not know that an hour earlier he had told my sister he was dipping under the water and he cannot keep himself up anymore. He was saying a final goodbye and it was not just to me and her.


Then… on to Wednesday and he was back. This disease is nuts. He has two mets to the brain. One is causing balance issues and one is causing left eyesight problems. Now the steroids have kicked in to reduce the brain swelling and most of the symptoms are gone. What was surprising is that we all thought this was the end but not the oncologist and not the second opinions. We will be looking to have gamma knife to the brain if the MDT agree on Tuesday and if not radiotherapy (I am not sure of the difference and whys or whats yet). Apparently the treatment can be very effective. Prof called me today to see what is happening and I asked about getting it privately to speed it up etc but he said unless there are stupid delays to not waste our money. It will be no different if it is done on NHS or privately and also, he said we have a great team looking after us. He also said the brain is the priority right now and to not think about the pancreas nanoknife.


One thing I would like to say for others if you ever think like us around chemo is that we really did not help ourselves. The push to make sure dad was fit for chemo was hard (and him wanting that as well) – we was all scared it would get refused. We saw him slowly going downhill and there were signs this was happening. Just headaches that got worse over time, appetite reducing again, eyesight getting worse and a general downhill trend. Yes he came to do my electric but just in general it was downhill. We thought it was just the cumulative effects of the chemo. When he went to the oncology appt to get furry fox sorted he took every tablet under the sun to make sure he was status zero (some fellow PC crusaders warned me this was probably not the best move).


All that has happened is he has suffered when we probably could have got this sorted a couple of months ago and his status would have gone back to zero anyway. They are not refusing furry fox as his status is back to zero… because of the doctors treating him, not because he could hold it together very well for an hour or so on drugs. I will forgive myself this as I did not realise how bad he was until it was really really bad. My first inkling was speaking to PCUK nurses – I knew then it was in his brain last week it just needed strategy to get him to go to hospital. So, oncologist has said not to worry about the original cancer for now, he has no worry on anything happening below the neck. We need to get the brain sorted and dad is still fine to have furry fox later.


I spoke to dad earlier (who is now home and discharged from hospital). I cannot believe we went from deaths door to home (and feeling the best he has in months) in 2 days. He quoted me Winston Churchill - ‘When going through hell, keep going.’ I think that sums up his views on this and so onwards we go. Since this chat and the Professor call I have, for some reason, got the dambusters song going around my head. What a twist and turn of events. x

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You have got the Dambusters theme running through your head because there was an item on the news today about the oldest surviving member of 633 Squadron. He is about 110 and fighting fit, wearing all his medals and RAF tie. You probably heard it in the background and now it's just stuck. I think it's called an 'earworm'. Drives you nuts eventually. There's probably a website for it, and if anyone can find it, you can. I haven't forgiven you for Sweatology yet.


You must be completely exhausted. And I really do get it about your partner being browned off with PC. One of the reasons I'm addicted to the forum is that by getting it off my chest on here I don't drive my friends round the twist. It's the constant contradictions that PC virgins can't cope with. "He's dying". "He's much better". Nobody understand the ups and downs like us.


You are worn out DG and I recommend having a couple of days off. From PC I mean. If you can. So get yourself beamed up from Planet PC, do some running or strong drinking or anything to relax a bit. We all need you back into fighting mode when you're good and ready.


Much love, Mo (and Boris of course)

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Hi D G I am delighted that your Dad is back on track again good luck for this next chapter....I know you can make it all happen for him as you have done magnificently up to now. You are so right about people needing a rest from P.C. talk and Mo I love your PC virgins bit a lot of our friends belong in that group. They mean ever so well but don't get the up and down bit. Good luck DG and best wishes to your Dad.

Elaine

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It gets to a point that I feel embarrassed to write and more so to discuss with friends and colleagues etc as to what is going on. Dad is v bad again. It was the most atrocious turn of events. His sister came to visit yesterday at 1pm and he was up and all for the visit and then on the way to the toilet... he collapsed, hit his head and was a mess. If my mum had been on her own it would have been awful. It took 3 of them to get him on the bed. My auntie phoned 999 and then me. I am 15 mins away and I said I will pack some stuff up, rally the teenager and we will be there in 45... let me know when you leave the village. I thought in my head, give the ambulance a chance to get him, put him in there, get to hospital without too much crowding... bearing in mind his sister was also there for mum. 45 mins later I called and said what is happening, mum was distraught and I said let me call them and get the time they will get there. I call 999 and say how long will you be. The operator said I am really sorry but an ambulance has not been dispatched because they are immensely busy. I asked them how long will it be and she said she could not say. Could they not have called back my auntie to say this so they could manage better rather than them all desperately wait on an ambulance??? It gets worse...


I said to them if you can... bundle him in the car and just take him to A&E. Mum said we won't be able to get him there from parking. I said, get him in the car, take him to a&e, and ditch the car wherever it is not blocking ambulances and send his sister in to get him a trolley and let the staff know very firmly to get out to him. I will sort the car out or let them tow it and I will sort it. So, get to A&E and he is in a wheel chair (this is difficult at this time). The place is packed... absolutely rammed. There was like 10 ambulances lined up and it was the absolute opposite of last week.


They were brilliant but this ordeal was not over... triage nurse said you should have waited for ambulance. You dad is the most ill out of anyone waiting on the trolleys / ambulances / in a&e but the ambulances are the priority always. Thank god I arrived just after this. Anyway, I went straight past dad and to the desk and said... we called an ambulance and it was delayed and so I have saved you an ambulance and I have helped you out to be told I screwed up doing this??? He had not been missed... they said absolutely not, everyone is moving everything to get your dad in.


Then we were wheeled through to the back and planted on the side and someone again come up and said we are sorting it. It was chaos in there and I thought as much as they were doing... it meant very bad news for dad that they were doing it. He got wheeled to a cubicle and everyone was in waiting room and I was with dad and they wheeled him in there and everyone was over him like a rash. I said he needs to lay down, he needs a bed and there was not one there. They said they had no beds to give him. It took an hour to get him a bed. Medical staff were excellent though, the lack of bed did not detract from his treatment. He is stable but very sick. Hang on for the next post... we have a deep dilemma on our hands. I am just offloading now... but there was a tear jerking convo yesterday re end of life issues. I may get someone to add. x

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......and I have just been asked to add as of course, this is exceptionally hard for DG to articulate.


The debate is, do they tell DG's dad if the end is near? Everyone religious is saying that he should be told if he's now dying but her Dad does NOT want to know, the only information he will/wants to know is what will be done to treat him.


Her dad thinks that when he's gone, he's gone and that there's nothing afterwards. Personally, I don't think that comes into the debate. Her dad knows he's terminally ill. In my opinion what on earth is there to be gained by saying "you are dying right now" if that is the case? He's not silly, I think it's particularly cruel to spell it out to him UNLESS he asks outright and then I personally think he should be told very gently that the disease is progressing and leave it at that. But, only if he asks and DG says he doesn't want to know.


I have just messaged DG to say that I don't think my hubby was ever aware that the end was approaching when it was, I think he just thought he was in hospital with an infection (I was always the researcher wanting times/expectancy etc) he didn't do a lot of delving...well if he did, I certainly didn't know about it. However, the fact that he did not know gives my son and I such massive comfort and I'm sure, from personal experience that DG & her family will take comfort from that too.


Anyhow, the debate is not about me or what happened to us DG would very much appreciate hearing your own thoughts on the matter.


When the end was approaching for my hubby, I asked his oncologist if he had to tell hubby. I was told "no, not unless he specifically asked". Well, if DG's dad doesn't want to know, he won't ask and they won't have to tell......WILL THEY????????


However, DG has just said that the doctors will tell him if the family don't stop them as they are just so clinical.


So the question to you all is....Do they tell him or not tell him and if so, your reasoning behind your answer?


I hope I've done you justice DG - very hard for me to put into words but I'm sure everyone will get the drift.


Just try to stay strong and focused my lovely. The most important thing now by far, is to make sure your dad is comfortable and if it is his time, then his passing must be made as peaceful as humanly possible. At the same time, the wellbeing of you, your mum, sister and boys is top priority and the hospital should also consider your feelings here at this truly hideous time.


Remember, this is a roller coaster. You dad is one strong cookie and may pull back from this and be strong enough for treatment. My advice is just to tell your Dad about the treatment plan for next week. Take away his hope and there is nothing left.


Thinking of you xxx

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I know it is silly to ask you all but it is such a hard decision. I have just e-mailed the Macmillan nurses as well to help us with this. We haven't done it before except my mum losing her mum in 1975. They left her thinking she would be okay. My dad will be devastated if it is the end. PC does npt give you the time to reconcile these things. My dad still wants to fight... and he may get that chance... who the hell knows. x

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That's exactly my point DG, nobody can say its the end until it is. Give him that chance. He wants to know about this treatment plans, then tell him. The minute you say it's game over, it probably will be. It certainly was the case for my dad. He fought and fought and fought but the minute he was told there was nothing more that could be done, he took to his bed and never got up again (duodenum cancer). xx

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No, I would not tell him. Actually he knows anyway what is coming, but not when. I remember when Rob thought he was dying that day and the consultant came and said in his opinion he would not be departing that day or the next (it was another 3 weeks) and he was SO pleased! it lifted his spirits. So I would say, knowing your dad far better than the medics do, not to say anything. When Rob was near the end he knew he was dying but said it when he wanted to and the rest of the time, he didn't want to talk about it! Another incidence of box ticking! We have seen this before, I think they have a list and the box which says 'make patient aware death is coming' remains unticked. It is wrong and will be get rid of in time. But that doesn't help you at this moment. x

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Dandy, So sorry to hear you dad is back in the hospital, and what a bloody horrendous time all that must have been for you all.

As to your question on whether or not your Dad should be told, my answer is No an emphatic NO.


Trevor's mantra was he was always going to beat the disease, no matter what anyone said, he was going to get better, and even though I know deep down he did understand, his way of coping was to believe that.

When he was admitted to hospital to have a procedure 10 days before he died, he actually asked the lovely lady registrar out of the blue "how long have I got" she luckily knew us and asked him if he was sure he wanted to know, he replied "yes" and she told him it was a matter of weeks, as things had progressed very quickly much quicker than expected. We went outside to the garden and cried a few tears. It wasn't mentioned again, until a couple of days later, when the consultant caring for him asked if he wanted to know the state of play, he firmly replied "NO" but speak to Sandra as she will.

Suggesting he go to the hospice was very hard as he wanted to go home, but his pain relief was still all over the place and I knew he needed to be somewhere were there was immediate top up available.

It wasn't like it is in the films he didn't tell us he loved us, we knew that already anyway it

just seemed to deflate him, if that makes sense, so no Dandy don't tell him if he wants to know he will ask.

Let hope that those decisions are far away anyway, sending love, strength and hugs, sandrax xx

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Sandra


A fair few of us are in contact over on FB. Would love you to join our group. Email admin for my details is you would like?


And no, it's not like the films is it? We told hubby constantly that we loved him as he passed but I would have so loved for him to have said a last goodbye to me. xx

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DG I am so sorry to hear about your Dad and also angry that your Mum and Aunt were put through what happened. I don't think people need to be reminded they may be dying I think that will have been at the front of their mind since the mind numbing diagnosis and prognosis was given to them. We have no clear idea if this will distress the person or if they already are aware of it. I will not allow anyone to tell Pete this as he has been living with that knowledge for the last eight weeks now and I don't think telling him would serve any purpose. I don't want what hope Pete has to be extinguished because what's left if we don't have hope. This may not be everyone's view and I hope it doesn't upset anyone .....it is purely my personal preference.

Stay strong DG .

Elaine

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Oh dandy this is so sad I don't come on very much since losing mum but from reading Pw post I knew I had to reach out. Your situation right now sounds exactly how mums played out at a & e!!!! We took the decision as a family that we would not tell mum it was the end, it was hard enough for us to comprehend let alone explain to mum, plus why make her suffer more or cause distress, what could be gained from telling her that, she knew she had this awful disease that was going to take her from us she'd lived with that for the 10 month since diagnosis and in her strong brave way I do believe she had come to terms with that. Just be with him as much as you can, play his favourite songs, talk about the happiest memories and just get as many kisses and hugs in as possible. Thinking of you sweetheart xxx

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DG, you don't really need to ask for advice. You KNOW what the answer is. Don't tell him any more than he needs to know. You, Dad and the family have existed on hope and the will to survive since the start of this. You can't take that away now.


Love and prayers

Mo

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Its really hard but I think no...don't tell him. Nige didn't want to know...He knew it was imminent, he wasn't stupid or deluded, but when the hospice nurse gave me an indication of 3-4 weeks I didn't tell him...he wasn't ready. As it happened it was only 4 days later that he died. Part of me gets comfort from the fact that he didn't know, but part of me is sometimes sad that he might have wanted to say stuff that he didn't get to...or perhaps write something to the children for them to read later. I don't think there's a right or a wrong choice, but it's got to be your choice, not the medics. Does he have a DNAR in place, because I think that is an important thing to have as the end draws near.


Much love DG...it's bloody awful.


Vx

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Dear Dandygal,

I am sorry to hear that your dad is feeling worse again.

I am amazed that in this continuous turmoil you still find time and energy to support the others on this forum.

My immediate reaction to your dilemma was 'No, please don't tell him' but after imagining myself in his position I could find 4 reasons why I would like to know:

1. I am my own carer, at least for the moment. I do my own research, deal with doctors, hospitals, treatments and medications. My family don't understand any of it and so I can't really rely on them in making any decisions relating to my health. This, however, does not apply to your dad as I am sure he trusts you explicitly in making the best possible choices.

2. I have two small children and would like to have an opportunity to record some videos and write letters when the time comes. I am not ready to do this at the moment.

3. My mother lives outside the EU and due to all sort of visa and stay duration limitations we really need as much notice of an imminent death as possible.

4. I deal with all the admin in our household and it would give me some peace of mind if I could do some sort of hand over/notes or even show my husband how to find relevant documents.

These are my reasons and they will not be relevant to your dad and may not seem important. I am just saying that there may be some practical reasons which do not seem to be very important but may give some peace of mind to your dad if he has a chance to deal with them. Only you and your mother know your dad well enough to see what they are (if any).

Also, won't the treatment plan or the absence of such tell him in itself how grave the situation is? Will the doctors not stop chemo/radiation, start suggesting a hospice if it gets to that stage?

I am thinking of you and your dad and sending you positive energy. I have no doubt that your will make the right decision when the time comes but I truly hope it is not that time yet.

x Stepuha

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