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MissMonteCarlo
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Posted on Mon, Feb 20, 2012 05:43

So my mum and I have an appointment with the consultant who was dealing with my dad after we sent in a letter of complaint. Not even sure if there is any purpose to this appointment. The consultant will just waffle on defending her actions and nothing will be done. That is pretty much the guaranteed outcome. We basically voiced in the letter how my dad felt. We were never given proper information about pancreatic cancer. What it realistically meant. We were given false hope. After my dads op he was told he stood a GOOD chance if he went on the chemo therapy trial. So we were led under this false illusion that going through this treatment meant my dad stood a good chance. This was not the truth. If we had of been properly informed about pancreatic cancer we could have made a proper informed decision. My dad even said he would have never gone through with the chemo if he knew the reality of his chances. It was also a long time between scans and my dad was in pain and they kept on saying to take these pain killers which were no good. He should of been on morphine at that point but we didn't know. We were thinking he was still suffering the after effects of chemo. We were even trying to get a hold of a dietician thinking he was eating the wrong food which was impossible. When he did get the scan results two weeks prior to his death that’s when he was started on morphine. That was also the week we got a hold of a dietician which was pointless. We lacked information, understanding. It wasn't until my dad had died that I came across the pancreatic cancer website which holds a wealth of information. I just wish I had found it sooner. I just didn't know anything about the cancer. I never dreamed it would be something my dad wouldn't survive. Also after the scan results my dad was sent home. A week later he was told they just noticed after checking the scan he had blood clots on his lungs. Why was that not picked up sooner? He went for a week without treatment, without that being realised. The overall point really is people should not be abandoned after initial treatment, scans should be more regular, more information should be provided, people should be given accurate, honest information so that they can make informed decisions about the course of treatment. My dad put his faith in these doctors and they let him down. He suffered needlessly through chemo when he was only going to have months to live anyway. To me that seems unethical. My mum was going to go on her own but there is no way I was going to allow my lovely mum to have to deal with this lady. Sarah


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rmac22
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Posted on Thu, Mar 01, 2012 14:06

Sarah: It is way to early for you to worry about moving on. Everything in its own time. You will move on when you are ready to do so. Take care and be gentle with yourself. rmac


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MissMonteCarlo
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Posted on Sat, Feb 25, 2012 01:55

Hey everyone, I know its important to move on but at the moment that is a hard task as it takes a while to adjust to the reality. Don't think I will ever be over this or accept this as deep down I feel sickened by it all. How things like that happen. I will not become bitter as a person because of it. I behave as I have always done in a positive way. The hurt will take a long time to heal but I don't like to burden that on anyone. Nobody wants to hear anything but that you are ok. Anyway there is not really anything to say that will make it better. I went straight back to work after my dad had died. My idea that the more structure I had in my life the better at times like this. So lately, I've been busy with that and my masters. My friends have been really good and I've enjoyed some good times with them. Went to the snow patrol concert in January as well which was amazing. Plus I've been spending quality time with my mum. Although I feel my defence barriers are up as I'm just not letting anyone be close to me. There was a lovely guy I met last year but I pushed myself away from him, can't deal with anything like that. Think its because I'm an emotional roller coaster and it just wouldn't be fair. Like I would probably crumble with a cuddle some days.That's the last thing I'd want him to see. So trying to move forward but yes these thoughts still churn and the hurt still feels as bad as it ever was, This week I was sent out a leaflet from the pancreatic cancer UK charity. Interestingly it was right on this topic. It said in 2011 a pancreatic cancer information booklet was created to be handed out to professionals for their patients to provide them with info, diagnosis, what it means, what are the options, life stories, info to the charity website. I was like OMG! That's exactly what I wished for. Shame it was a year too late for my dad but at least now that is going to be extremely helpful to current and future patients. I will be going to see the consultant on Wednesday so will double check to make sure she has these booklets. I've decided I'm going to build my running further this year and train for a run. The charity do a yearly run in Edinburgh so that's my target. its 10k so roughly over 6 miles. Not a huge amount but currently I run 3 miles which feels like plenty, lol So have my work cut out. I like to do things like that in a reasonable time. Thanks for all your comments people and sorry to rant on. Sarah x


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attaboy127
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Posted on Thu, Feb 23, 2012 07:15

Dear Sarah, I am sure all of us on the site are sad at your loss and even sadder to learn about those facts leading up to your Dad's death. Hopefully by your getting this message out (people on this site at least) you have awakened us to the fact that there is a lot of information on this internet where we can also inform ourselves as to what it is we have and how many options we may or maynot have. Choices, choices are an important part of life. However, medically it has been difficult at times to know what is going on, but not any longer. God bless you and yours, John


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Tinkerbelle
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Posted on Thu, Feb 23, 2012 00:18

Sarah, At times the medical profession has a lot to answer for. It has always seemed to me , having lost my mother to liver cancer and various friends and rellies to other forms of the disease that pertinent information from our medical establishment is on a strictly need to know basis. Its appalling but there it is. Im not sure if anything can be achieved by this appointment except to upset your self further. The problems in our health service are endemic. Not that that makes it right its just the way this faulty machine operates, and im not sure any kind of meeting will change things. Your poor dad suffered just like my mother and indeed my father for different reasons. Both were let down by the system. Let it go dear girl and move on with your life. Its what your dad would have wanted im sure. Big hugs from me xx


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fishyme
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Posted on Wed, Feb 22, 2012 00:36

Hi Sarah,I'm wishing you well on your side of the pond.Big medicine doesn't care about anything but making money over here and it sounds like that for you also.There's not much to do for hindsight,I'm sure you ghost yourself some.Open heart surgery seems to be my familys thing and I'm learned somewhat from others.Don't let them beat you down but instead get them to where they at least inform everyone about the pancreatic cancer website from the begining.It's better than what you started with,just trust.Nothing is going to replace whom you've lost but maybe you can help thousands of daughters from feeling what your going through. Best Wishes,Don


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bepositive
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Posted on Tue, Feb 21, 2012 07:00

I am very sorry for your loss.  I have lost many loved one to cancer including my wonderful husband of 29 years.  We were fortunate to have the Cleveland Clinic (a wonderful cancer facility) and they were very honest with his treatment and what the outcome would be.  Everyone should be given correct information up front so they can make informed decisions. 

My prayers are with you and your family.  I hope the fond memories of your Dad will provide you some peace and guide you for what is ahead of you.

God Bless

 



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