My Sadness...

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My Sadness...

Post by BlueCoverman on Tue Mar 13, 2012 8:06 pm

My Dad was diagnosed with the curse that is dementia in 2008. I have mentioned it on here previously and have corresponded privately with Old Shanker whose own Father suffered a similar fate. Having seen him deteriorate from the brilliant, intelligent and articulate man that he was to a point where he had to be admitted to hospital in late January was something that I have found incredibly difficult and upsetting. Now six weeks later we try and get to the hospital to see him on most days.

My only small crumb of comfort was that my Mother, who has done a fantastic job as his main carer, could start to get her own life back a little. A very social and entertaining lady, she has many interests and a wide circle of friends. In late February after a routine visit to her GP, a blood test showed some worrying results. An Ultrasound scan and a CT scan followed and yesterday we received the devastating news that she is suffering with cancer of the pancreas. The despair and desperation that I feel for her this morning, so soon after Dad's decline, is difficult to describe.

I know that most of us have to face up to sadness at some time in our lives. I read Doc's moving story of the loss of his daughter recently and LadyPutt mentioned losing her Mother to the same disease as my mine. However, I fear that there are some dark days ahead and I feel completely unprepared to cope. Thanks for reading
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Re: My Sadness...

Post by Davie on Tue Mar 13, 2012 8:20 pm

Hard to find the words, BCM

I too can empathise with the dementia side of your story as my own mother also went through that for a number of years until she passed away nearly to years ago. The news of your mother though, so soon after she was perhaps somehow "released" to a more normal life after caring for your Dad for so long - leaves me short of words.

Be strong for her - she'll need you in the coming months. Sometimes you need a close friend to talk things over with - sometimes it's strangely easier to talk to a relative stranger. I'm sure there are plenty of us here that are ready and willing to talk, should you need it. Face your Mum (and Dad) with a smile, even though you don't feel it right now Hug
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Re: My Sadness...

Post by Mercurio on Tue Mar 13, 2012 8:52 pm

My thoughts are with you, BCM.

Sometimes, it can help to chat to someone who is not a close friend or family. If you ever feel like that, I'll be there for you.
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Re: My Sadness...

Post by LadyPutt on Tue Mar 13, 2012 11:09 pm

So sorry to read that, Blue. I am afraid that there are indeed dark days ahead but as Davie says, you will need to be strong for her. Make sure you take advantage of all the help that is offered - the Macmillan nurses (and indeed the local Macmillan Unit in Christchurch near where we lived) - were fantastic, not only in caring for my mother, but also in providing a shoulder for me to cry on (literally on occasions). When the time comes, if you can get her into a hospice for specialist care, then that would be for the best.

Be strong - and we are all here for you. Flower
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Re: My Sadness...

Post by Mary_S on Wed Mar 14, 2012 12:37 am

My thoughts are with you BCM. Such a cruel blow re. your Mother's diagnosis.

At times like this, we do seem to find an inner strength from somewhere - take care of yourself in the midst of it all.

As others have said, we are all here for you.

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Re: My Sadness...

Post by LondonJonnyO on Wed Mar 14, 2012 6:14 am

Blue. If you can manage it get her to the royal marsden. Best place for cancer that there is.
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Re: My Sadness...

Post by oldshanker on Wed Mar 14, 2012 6:58 am

BCM - so sorry to hear about your Mum. My thoughts and prayers are with you as well as her.

You will find surprising strength within your family, and although it seems impossible now, if something is funny, don't forget to laugh, it's not being disrespectful it is a wonderful release.

OS
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Re: My Sadness...

Post by Davie on Wed Mar 14, 2012 7:01 am

oldshanker wrote:if something is funny, don't forget to laugh

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Re: My Sadness...

Post by BlueCoverman on Wed Mar 14, 2012 7:40 pm

Davie, Merc, LP, Mary, LJ and OS...

Many thanks for your generous responses...your kind remarks are much appreciated
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Re: My Sadness...

Post by BlueCoverman on Wed Mar 14, 2012 7:44 pm

LondonJonnyO wrote:Blue. If you can manage it get her to the royal marsden. Best place for cancer that there is.

London...Thanks but I don't think that even the Marsden is much good for those unfortunate enough to be diagnosed with pancreatic cancer. I understand that the survival rates for this type of cancer have barely improved in the last 40 years
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Re: My Sadness...

Post by Maverick on Wed Mar 14, 2012 7:47 pm

Blue sorry to hear such sad news, my thoughts and prayers go out to you and your family.

I can only echo what has already been said in that in those moment where something even of the most absurd nature is funny, don't forget to smile and laugh as those moments will be the break that's needed from such heartbreak.
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Re: My Sadness...

Post by BlueCoverman on Wed Mar 14, 2012 8:03 pm

Davie wrote:
oldshanker wrote:if something is funny, don't forget to laugh


Yes you are right of course, although I don't feel like laughing much this week there were some funny incidents during Dad's illness when he was still at home. A couple of years ago, when Dad was still able to go out, Mum and Dad were going to a Conservative Party dinner one evening. It was being hosted by our local MP Priti Patel who is a rather strikingly attractive woman in her late thirties.

Mum was trying to get him ready and Dad asked "Well where are we going tonight then?" Mum replied, "We are going to a Conservative Party dinner and Priti Patel is going to be the main speaker". Five minutes later Dad asked the same question "Well where are we going tonight then?", Mum gave the same answer.

Another five minutes went by and back came the same question from Dad. Mother, by now getting a little exasperated, said "I've told you we are going to see Priti Patel, you know Priti Patel she is our local MP".

"Yes, Yes, Yes," Dad replied, "Of course I know her, I've slept with her lots of times!"
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Re: My Sadness...

Post by BlueCoverman on Wed Mar 14, 2012 8:10 pm

Thanks Mav, appreciate it...good luck to your Dad with his operation this week
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Re: My Sadness...

Post by MustPuttBetter on Wed Mar 14, 2012 8:51 pm

I'm lucky enough to not have had much experience with this sort of thing so i won't offer any 'advice'. Suffice to say, i am sorry to hear you and your people are having what sounds like a very tough time indeed. Best wishes

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Re: My Sadness...

Post by BlueCoverman on Wed Mar 14, 2012 10:59 pm

Thank you MPB
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Re: My Sadness...

Post by 1GrumpyGolfer on Thu Mar 15, 2012 9:07 am

BCM. I'm so sorry to hear your news. My thoughts and prayers go out to you and your family. I don't really know what to say, although my wife's family has been hit hard by cancer I have been fortunate enough not to lose anyone really close to me.

If you ever want somebody to vent at just let me know. I'm sure my fantasy league ineptitude and indignation at Venice's administration will raise a smile from time to time. Best wishes Grumps

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Re: My Sadness...

Post by BlueCoverman on Thu Mar 15, 2012 7:09 pm

Thanks for that Grumps, much appreciated. Sorry to hear that your wife's family has suffered
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Re: My Sadness...

Post by BlueCoverman on Wed Mar 21, 2012 1:51 am

We saw the Oncologist at the hospital this morning. Mum has an neuroendocrine tumour which are fairly uncommon and can strike anybody at any age apparently.

They are not recommending chemotherapy at the moment as the general state of Mum's health has become quite poor. She will start to take steroid tablets to assist the condition of her liver and more blood tests and other tests are to follow this week. The plan is to see how the tumour behaves in the next fortnight and discuss further treatment then.

I am full of admiration for how stoical and brave she is being Flower
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Re: My Sadness...

Post by LadyPutt on Wed Mar 21, 2012 3:20 am

Cross Fingers for you and your family. Hug
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Re: My Sadness...

Post by BlueCoverman on Wed Mar 21, 2012 6:04 am

Thank you LadyPutt.

I do feel a strange sense of comfort posting on here, but I realise that this thread may bring back some distressing memories for you and possibly some other members of the forum. That obviously is not my intention and if anybody would prefer me not to post any further, then please say and I will discontinue.

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Re: My Sadness...

Post by Davie on Wed Mar 21, 2012 6:43 am

BCM - I can't speak for the others but for myself I'd say keep posting!

Yes it can bring back bad memories for some but that doesn't mean you shouldn't continue getting that sense of comfort. I'm not a "praying" type of guy but I know you are in my thoughts and I'm pretty confident that others are thinking of you and your family too

Keep your chin up pal
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Re: My Sadness...

Post by oldshanker on Wed Mar 21, 2012 9:18 am

No keep posting BCM - love to your Mum.

In my work, the average age of my clients is 70+ and it never ceases to amaze me how they come in with a smile on their face, even though I know full well they are either grieving or hurting.
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Re: My Sadness...

Post by diggers on Wed Mar 21, 2012 9:30 am

If its cathartic Blue keep posting mate, whatever gets you through the day. You"ll only have people wishing you the best.

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Re: My Sadness...

Post by Doc on Wed Mar 21, 2012 7:07 pm

Blue I'm gutted for you mate and will be keeping my fingers crossed. The loss of my daughter to breast cancer at Xmas is still raw, but getting easier.

The treatments for cancer are improving all the time, and survival rates are also massivley improving, so don't just think 'game over'. Try and keep positive. Cross Fingers
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Re: My Sadness...

Post by Mary_S on Wed Mar 21, 2012 7:35 pm

diggers wrote:If its cathartic Blue keep posting mate, whatever gets you through the day. You"ll only have people wishing you the best.

+1

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Re: My Sadness...

Post by LadyPutt on Wed Mar 21, 2012 9:39 pm

Agree with everyone else - keep posting. Time is a great healer and it is almost 20 years since my Mum died so the good memories are still there but the pain of my loss has gone.

I just wish I'd had something like this to support me at the time. Flower
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Re: My Sadness...

Post by BlueCoverman on Sat Mar 31, 2012 12:26 am

Thank you all for your kind comments and encouragement.

We are back to see the Oncologist again on Tuesday. Can't say that I am looking forward to it.
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Re: My Sadness...

Post by Doc on Sat Mar 31, 2012 12:52 am

BC the oncologist department can be the most sureal place in the world. I went to see a leading professor who was a top bloke in his field (Breast Cancer) with my daughter 3-years ago. Obviously there were loads of people sitting around with varying degrees of hair loss, but the atmosphere was great. everyone seemed to have a smile on their face and the staff were brilliant, and actually engendered the good atmosphere. It was a bit like 'sod em, its us against the world'. The professor was very matter of fact and had known my daughter for a number of years as he treated her the 1st time. He said there wasn't much point in suing him as he had witnesses that would back him up and say that professor D never said he'd got it all and it wouldn't come back. He obviously said this very tongue in cheek, but actually said he was shocked that it had come back, and no chance of it going, and therefore no chance of surviving it. He did however say that although the prognosis was for less than a year, he would make sure that he used a variety of cocktails (Chemo) to make sure she beat the odds and got as much time as possible. He got her 3-years which I'll always be thankful for. But one thing that stood out (Besides the humour in the place) was that chemo treatments had moved on significantly, since the 1st time we were there. It was always a certainty that as soon as anyone had chemo, there would be sickness for a week or so. he put her on a type that ensured she wouldn't be sick, which meant she had an appetite and got stronger rather than weaker. He said that the stuff would probably make her fingers tingle, but besides that it would be better than honking. He said once that starts failing I have something else, and then something else up until theres nothing left to try. There's some very switched on caring people in the oncology departments of the NHS, so you may be surprised.
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Re: My Sadness...

Post by BlueCoverman on Sat Mar 31, 2012 1:11 am

That makes encouraging reading Doc and has made me feel a little more positive. Thank you for taking the time to post
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Re: My Sadness...

Post by BlueCoverman on Tue Apr 03, 2012 8:02 pm

Just about to leave for the hospital appointment. Wish her luck Flower
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Re: My Sadness...

Post by Davie on Tue Apr 03, 2012 8:09 pm

Good luck - to you AND your Mum Flower
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Re: My Sadness...

Post by 1GrumpyGolfer on Tue Apr 03, 2012 8:50 pm

Davie wrote:Good luck - to you AND your Mum Flower

Fingers crossed Blue, good luck to both of you. Grumps

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Re: My Sadness...

Post by diggers on Tue Apr 03, 2012 9:08 pm

All the best Blue.

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Re: My Sadness...

Post by Mary_S on Tue Apr 03, 2012 9:41 pm

Best wishes. Flower
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Re: My Sadness...

Post by MustPuttBetter on Tue Apr 03, 2012 9:52 pm

Fingers crossed Cross Fingers

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Re: My Sadness...

Post by BlueCoverman on Wed Apr 04, 2012 3:07 am

Thanks very much all, I am sincerely moved by the support on here.

The CT scan shows that Mum has a 6cm. x 7cm. x 6cm. Neuroendocrine tumour at the head of her pancreas. The tumour is invading the portal vein and the superior mesenteric vein. There is a 2 cm. deposit in the right lobe of her liver. All sounds a bit grim but on the positive side Mum says that she has no pain and her appetite is much improved since she started to take the steroid tablets.

Mum is being referred to the Royal Free London Hospital in Hampstead which has a specialist unit. Just been reading up on the website and it states that 'The neuroendocrine tumour unit at the Royal Free Hospital has an international reputation for the management of neuroendocrine tumour patients. In 2010 it was the first UK centre to be awarded European Centre of Excellence. It currently receives 12-20 new referrals per month from across the UK as well as from abroad'

I am pleased in a way that she is not suitable for chemotherapy because I know the horrible side effects that this can sometimes cause. Can't say that I will look forward to battling the London transport system with her from North Essex, but I feel a great sense of relief tonight that whatever happens, I now know that Mum will have the best treatment and care, from the specialists at the Royal Free, that is available in this country.

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Re: My Sadness...

Post by 1GrumpyGolfer on Wed Apr 04, 2012 3:59 am

Blue, I'm glad she's getting the best care possible and that the steroids seem to be helping her. Take a deep breath, relax with a glass of wine or beer tonight and regroup for the next trip into London. Cross Fingers

Plus you've got the Masters to come this weekend and my sorry bunch of losers and muppets for the fantasy league to give you a smile.

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Re: My Sadness...

Post by BlueCoverman on Wed Apr 04, 2012 4:12 am

Cheers Grumps

I suspect that you have just been toying with us previously and I fully expect to see your name up there amongst the leaders this weekend!
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Re: My Sadness...

Post by 1GrumpyGolfer on Wed Apr 04, 2012 4:23 am

BlueCoverman wrote:Cheers Grumps

I suspect that you have just been toying with us previously and I fully expect to see your name up there amongst the leaders this weekend!

Ha, ha I wish. I'm waiting until the last minute to cherry pick from everyone else in an attempt to score some points. However this was before we poked fun at Venice for missing his amateur pick so he will ignore me completely this time. I'm guessing one or two many mint julips has got Venice flustered.

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Re: My Sadness...

Post by oldshanker on Wed Apr 04, 2012 9:52 am

Just picked up this thread a bit late BCM.

Good news about the Royal Free, lack of pain and healthy appetite.

I hope everything turns out as well as it can for both of you.
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Re: My Sadness...

Post by LadyPutt on Wed Apr 04, 2012 8:58 pm

She couldn't be getting treatment and care from a better place BCM. So sorry to hear the diagnosis but stay strong and I'm sure your Mum will have a good quality of life in the coming months, especially as she says she is in no pain and has her appetite back. I'm sure I don't need to tell you to cherish every day and try to stay positive. Flower
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Re: My Sadness...

Post by BlueCoverman on Thu Apr 05, 2012 2:45 am

old shanker, LadyPutt...thank you for your lovely comments.

She is such a sweetheart, she cried yesterday. I feel so desperately sad for her, it's enough to break your heart
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Re: My Sadness...

Post by LadyPutt on Thu Apr 05, 2012 2:55 am

Hug
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Re: My Sadness...

Post by BlueCoverman on Fri Apr 27, 2012 9:53 pm

We have still not received an appointment for Mum from the Royal Free Hospital. Mum last saw the Consultant Oncologist on 3rd April and we have had a copy of his letter to the Royal Free requesting Mum to be seen, although it showed the date typed was not until 12th April!

I have since chased twice by telephone but to no avail. I am concerned because I would have thought that the sooner Mum has treatment, the better her chances are of extending her life. Am I being too optimistic in expecting that we should have had an appointment by now?
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Re: My Sadness...

Post by Doc on Fri Apr 27, 2012 10:38 pm

BC I'm feeling it for you mate. maybe an idea to contact her normal doctor so that he/she can demand some action.

Maybe I'm well off the mark here, but as my daughter got instant service and fantastic treatment, I don't like to knock the NHS. BUT do I detect mabe a bit of ageism here, she's old and will not be 'cured', so put her at the back of the list ...... I would also email my local MP, which is easy to do as all MP's are on a UGov site called 'They work for you', so make them. Good luck mate.
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Re: My Sadness...

Post by 1GrumpyGolfer on Fri Apr 27, 2012 11:37 pm

Blue, I'm sorry to hear that. Must admit I've got no idea how this stuff works anymore. Hopefully, after emailing your local MP and getting in touch with your mum's doctor you will have some good news to come back to after your golfing trip to Turkey. Good luck Grumps

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Re: My Sadness...

Post by LondonJonnyO on Sun Apr 29, 2012 11:28 am

you have the right to choose where she receives treatment on the nhs now. And they should send you a letter with the choices. When you book they should tell you when and where the next appt is going to be.

Complain.
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Re: My Sadness...

Post by Mary_S on Sun Apr 29, 2012 6:51 pm

Sorry to hear that things are not happening as quickly as they should BC. Do chase it up via as many avenues as possible - sometimes it's a case of "he who shouts loudest". Good luck.
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Re: My Sadness...

Post by BlueCoverman on Sun Apr 29, 2012 11:58 pm

Thanks all

After much chasing around late Friday afternoon I did manage to get to speak to a consultant nurse at the Royal Free who was aware of Mums details. To be fair, they have been requesting imaging and test results from the oncologist which have now been received. Mum's case is due to be discussed at a meeting on this Tuesday at the Royal Free and I have been promised that we will have some recommendations shortly after then.
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Re: My Sadness...

Post by oldshanker on Mon Apr 30, 2012 2:01 am

That's good news BCM - these things never seem to move as quickly as you would like them to.

My Granddaughter was waiting for some Physiotherapy for hypermobility, which I felt should have been moving ages ago. Thankfully it is now proceeding, hopefully you and your Mum will have the green light soon as well.

As always - our best wishes are with you and yours
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