My beautiful Grandad Pathttps://community.macmillan.org.uk/cancer-blogs/b/my_beautiful_grandad_pat/atomTelligent Community (Build: 12.1.2.21912)2009-09-27T07:56:53ZAbout consultaions!!!https://community.macmillan.org.uk/cancer-blogs/b/my_beautiful_grandad_pat/posts/about-consultaions2009-11-08T10:12:55Z2009-11-08T10:12:55Z<p>When i used to go to hospital appoinmaents with my grandad, I was the only member of family the Haematology and PIU unit staff saw. I built good relations with them and when i took my grandad for bt's, i would talk in private with the doc or staff nurses about any concerns. In July when i expressed my concerns about my thoughts of progression of my grandads condition (ie, he was more tired and sleepy, more unstable on his legs, he had blood spots apearing on his skin, sometimes short of breath, not eating and not being able to face food, more weight loss etc are just to name a few) to the nurse, she gave him a bone marrow that day. When i went to collect my grandad that day he said he thought something was going on and he told me about the BM sample they had taken that day. When we went back the next week, the nurse took my grandad and i into a private room and she said to my grandad after plesantries "Im sorry to tell you Patrick your bone marrow results are not very good and are showing that your condition has progressed to AML." After a disscussion the nurse asked my grandad if he had any questions. The only question he asked is "Is it terminal" and the answer was yes. After my grandad went back to his chair to await his BT i stayed and asked the nurse my own questions. I asked with people who have the same condition as my grandad with the same type of blood results how long around do they have left. She told me weeks maybe a month but thats only an estimation because some people can last a lot longer or not so long. Because i asked those questions and my grandad didn't i kept this too myself because it wasn't my place to tell him. </p>
<p> My point is no one i know has ever been told how long they have actually got left unless they have specifically asked the question.</p>
<p>three weeks before my grandad died, the doc said he no longer needed an appoinment for his weekly BT and he could just turn up if he felt well enough. </p>
<p>I had a private chat with nurse and because i had always told her i wanted her to be brutally honest with me, she told me the doc didn't expect grandad to be here. He defied the odds and turned up for another 3 weeks, it was such a struggle to see my grandads determination to get to hosp and a phsycal struggle to get him there in and out of the car. </p>
<p>The team who looked after my grandad all those years spoke highly and knidly of my grandad. Dr Osborne and Sally both said he was a pleasure to know and treat. Doc Osborne said my grandad was a Gentle Gentleman who never ever complained.</p>
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<p>I miss my grandad so much, my aunt said i should have told her what i knew, but i don't think it was my place is she wanted to know the answers to those kinds of questions she should have been at the hospital asking the doc herself, it wasn't my place to tell anyone that kind of news because some people wouldn't appreciate being told and thats why i never had that particular discussion with my grandad he asked his aown question and it wasn't my place to tell him any more than that. </p>
<p>I felt i had to write this because of recent discussions of what is said regarding being told how long a person has left. It is such a sensitive subject.</p>
<p>I really miss my grandad 19/06/1933 - 26/09/2009</p><div style="clear:both;"></div><img src="https://community.macmillan.org.uk/aggbug?PostID=269557&AppID=29954&AppType=Weblog&ContentType=0" width="1" height="1">Former Memberhttps://community.macmillan.org.uk/members/formermemberLife will never be the same again!!!!!!!!https://community.macmillan.org.uk/cancer-blogs/b/my_beautiful_grandad_pat/posts/life-will-never-be-the-same-again2009-09-27T06:56:53Z2009-09-27T06:56:53Z<p>I've been through this long hard journey with my grandad which first started with investigations around 5 or 6 years ago. After lots of of appointments he was finally diagnosed with MDS (Myelodyplasia Syndrome) after having a bone marrow sample taken. The timespan between his regular blood transfussions became closer and closer until his was being transfused every week. His red cells were always very low. In July he had another bone marrow sample taken and it revealed that it had progressed with avengance to AML (Acute Myeloid Luekaemia). 3 weeks ago on thurs his blood result were red cell 8.7 wbc 128.3 and platlets 16. He had a blood tranfussion. The docs said we wouldn't make it to the next week. But evey week my grandad was still determined to get to the hospital and I made sure I got him there. He made it his weekly goal. Amazingly the next week his rbc were 10.1 wbc had dropped to 37.8 and platlets were 8. He had 2 bags of platelets and was determined to make it to the next thurday to see if the platelets had bought him any more time. God knows how but he defied all the odds and actually made it to the thursday 24th Sept. I don't know how me and my friend got him to hospital but we did. He came home from hospital on Friday at 3.30pm. The district nurses came and inserted the shringe driver at 9pm. My beautiful grandad passed away at 1.01am 26th Sept 09. He died peacefully in his sleep. I'm now left with a great hole full of extreme sadness. Life is never going to be the same again. I love him more than words can say already. I've spent so much time with my grandad, I've shared his pain and now he's gone. Luckily I got to have him in my life for 36 years and he has been my role model and my best friend. Where do i go from here?</p><div style="clear:both;"></div><img src="https://community.macmillan.org.uk/aggbug?PostID=255091&AppID=29954&AppType=Weblog&ContentType=0" width="1" height="1">Former Memberhttps://community.macmillan.org.uk/members/formermember