Clare Posted December 18, 2009 Report Share Posted December 18, 2009 Sorry after having another phone call from my mum which ended with her in floods of tears and hanging up on me I just need to vent In JUN my dad was poorly and they started doing tests, in Aug we were told he had liver cancer, in Sept we were told it was just a cyst causing the problems which would be removed, he went to what he thought to be the appointment for the cyst to be removed to be told he had cancer, this was November and he was referred to Hammersmith hospital, they did tests and sent my parents home with copies of paperwork and a promise of a appointment with a specialist, on the way home mum read the paperwork which said he had a large tumour on the pancreas, great way to find out on a train on the way home They waited weeks to get the appointment and they said they would operate, he would need to go back for some assessments to check he was okay for surgery. Another couple of weeks and they did the long journey back into London for him to ride a bike for 20 mins and get sent home. At the beginning of Dec he went back to see the specialist who told him he had a heart condition and until that was sorted he could not have any treatment for the tumour. He was given an appointment which was cancelled and he eventually got to see the heart specialist and was told it was only an irregular heartbeat not an issue at all. He went back to see a ornacologist (?) last week whos first words were "don't know why you have been sent to see me" I think mum lost the plot a bit at this point and today she recieved a letter from Hammersmith basically covering their backs in preparation for any compliant from our family, but it has upset her badly as it apparantly has a detailed explanation of Dads problems and it obviously is not nice reading. It said they can not operate due to the heart condition, and they told my brother all this at the time and its his fault for witholding information from my parents - completely untrue My brother is going to write back politely pointing out the inaccuracies and saying we have no intention of making a fuss and please can they just treat our Dad. Dad is going back to see the Ornacologist on Wednesday who has promised to have spoken to Hammersmith and have all his notes this time and be fully informed, but the whole thing has made a horrible time thousands times worse. I wonder perhaps if we should have all taken loans out and sent him private but now wonder if it has been left too long, I know the outlook is not great even when treated properly I can't stop thinking of all the cancelled appointments, appointments arranged only to arrive and be told they have been sent to the wrong person, and the general lack of compassion my poor parents have suffered. I get cross at my mum and am avoiding her as she constantly breaks down and gets hysterical, I know she is intitled to but I am trying to be strong and she drags me down, I know thats a terrible thing to say Sorry for the ramble but its so hard to speak about it and writing it down helps Link to comment Share on other sites More sharing options...
scotslass Posted December 18, 2009 Report Share Posted December 18, 2009 I can't think of anything constructive to say, but my heart goes out to you all. No wonder your mother is distraught - this has been going on since June? It's absolutely appalling, and whether or not they could offer any useful treatment, everyone is surely entitled to a bit of compassion? It's wise to try to be calm - at least they can't accuse you of hysteria when you meet them - would it be possible for your brother and you to see the oncologist too? Your mother may not be the best person to deal with this meeting in her present state of mind. I do hope your father gets some treatment soon and am so sorry you're having to go through this. Link to comment Share on other sites More sharing options...
phoenix Posted December 18, 2009 Report Share Posted December 18, 2009 nor do i have anything constructive to say except this is a very difficult situation and i really hope your dad gets the treatment he needs, Link to comment Share on other sites More sharing options...
Clare Posted December 18, 2009 Author Report Share Posted December 18, 2009 Thank you Yes this all started in June My brother is going with them on Wednesday, so hopefully something constructive should come from the appointment. I just get a horrible feeling they are going to get out of it by saying its too advanced now. I know we always read about the state of the NHS but I am truely shocked at the treatment they have recieved, I accept the waiting lists are long, they are short of funding and overworked but surely some compassion and understanding isn't too much to ask for, especially when they are dealing with such a deverstating diagnosis. Link to comment Share on other sites More sharing options...
scotslass Posted December 18, 2009 Report Share Posted December 18, 2009 My parents both died of cancer a few years ago, and the treatment they received was variable, to say the least. I saw examples of downright neglect, although I did meet individuals - including the staff of my local health centre - where the care was superlative. By the time my mother was ill, I'd learned to stand my ground with hospital staff - but oh, how it wears you down when you aren't feeling strong anyway. Your father has a right to be treated humanely; you do wonder sometimes whether these doctors have ever encountered serious illness within their own families. I'm glad your father has a loving family to care about him. Thinking of you all. Link to comment Share on other sites More sharing options...
sproggie14 Posted December 18, 2009 Report Share Posted December 18, 2009 I'm so sorry what a horrible time I would very very strongly recommend that your father pushes for a referral to the Royal Marsden. You have every right to do so and that really is the place to be for the best hope of successful treatment. Dave has been treated there twice and used to work there so we speak from experience when we say they really are the best and you get a far superior standard of care there. Link to comment Share on other sites More sharing options...
suzeanna Posted December 18, 2009 Report Share Posted December 18, 2009 My OH's mother had pancreatic cancer...she was told, variously, that it was a psychological pain due to losing her husband, a related pain from a bad back, pain from a gastric upset...etc.etc. This whilst she was losing weight at a frightening rate, and in constant bad pain. She had scans, x rays etc which "showed all normal" and when in the end they said it was cancer, it was far too late. My OH and his two brothers all bitterly regretted not making more fuss at the time she having all these different diagnosis, so please hold out for your dad to get treatment as soon as possible. Incidentally..I hope you don't think I'm out of order saying this....I know you love your father dearly, but you aren't his wife. I'm a bit taken aback that you seem angry that your mother is "hysterical"...she is facing maybe losing her life partner, I'd be pretty hysterical myself in her shoes! try to be as supportive of her as you are of him. In this situation, you need to be the strong grown up, and be the one whose shoulder she can cry on. Who else has she got? Link to comment Share on other sites More sharing options...
mooandboo Posted December 18, 2009 Report Share Posted December 18, 2009 I'm so sorry to hear of all you and your family are going through One thing I can suggest is to take a dictaphone to every meeting, my Dad does this and it's proved invaluable. Have you and your family been in touch with Macmillan Cancer Support at all? Sending you all positive wishes and strength, especially your Dad Link to comment Share on other sites More sharing options...
Clare Posted December 18, 2009 Author Report Share Posted December 18, 2009 I would very very strongly recommend that your father pushes for a referral to the Royal Marsden. You have every right to do so and that really is the place to be for the best hope of successful treatment. Dave has been treated there twice and used to work there so we speak from experience when we say they really are the best and you get a far superior standard of care there. Thank you I will mention that to my brother for Wednesday Incidentally..I hope you don't think I'm out of order saying this....I know you love your father dearly, but you aren't his wife. I'm a bit taken aback that you seem angry that your mother is "hysterical"...she is facing maybe losing her life partner, I'd be pretty hysterical myself in her shoes! try to be as supportive of her as you are of him. In this situation, you need to be the strong grown up, and be the one whose shoulder she can cry on. Who else has she got? I understand what you are saying and I don't feel proud of the way I feel, I guess I want to know what is happening to my Dad and its hard to understand what is going on when she can't communicate (completely understandable considering what she is facing), and it makes trying to spend special time while we have it difficult, which is purely selfish I know, and of course she knows she has all our support and can cry on our shoulders whenever she needs to. I'm so sorry to hear of all you and your family are going through One thing I can suggest is to take a dictaphone to every meeting, my Dad does this and it's proved invaluable. Have you and your family been in touch with Macmillan Cancer Support at all? The dictaphone is a great idea thank you Haven't been in contact with McMillan, mum can't really speak about it Link to comment Share on other sites More sharing options...
Ian Posted December 18, 2009 Report Share Posted December 18, 2009 I'm so sorry to read your terrible situation & even more so to hear that those you would hope would be providing help & support to your family actually seem to be making life even harder for you. By this stage I probably would have been making a fuss so I think you've been more than reasonable. I think approaching MacMillan suggestion, or possibly a local hospice that works with them if you have one is an excellent suggestion, as is recording your meetings in future. I hope that your brothers visit produces some a more successful outcome than you've had so far & your family can enjoy the best possible xmas at this difficult time Link to comment Share on other sites More sharing options...
mooandboo Posted December 18, 2009 Report Share Posted December 18, 2009 Haven't been in contact with McMillan, mum can't really speak about it It might be worh you giving them a call for advice, they may be able to help you support your parents without being dragged down and may have suggestions about his treatment so far - worth a try at least. Would your Dad feel like contacting them? I'm sure he's as worried about your Mum as he is about himself, probably more so If it helps to write it down here keep doing so, you need support as well Link to comment Share on other sites More sharing options...
greys mum Posted December 18, 2009 Report Share Posted December 18, 2009 Unfortunately I know what you are going through. What we found was, the doctors attitude changed when there was someone younger going with into the meetings with my mum. She wasn't stupid, but was made to feel so. Hope that your brother can get your dad the treatment that he rightly deserves. Thinking of you and your family at this difficult time. Link to comment Share on other sites More sharing options...
kats n greys Posted December 18, 2009 Report Share Posted December 18, 2009 Hope your Dad starts getting the help he needs. Link to comment Share on other sites More sharing options...
Clare Posted December 18, 2009 Author Report Share Posted December 18, 2009 She wasn't stupid, but was made to feel so. That is exactly what they said How would these so called specialists feel if it was their mum or dad. When Dad went for his heart check my SIL who works as a care assistant on the geriatric ward came down in her break and sat with mum and dad while they were waiting to be seen, the person doing the test came out to get him and throughout the exam hardly bothered speaking to dad, and at the end he ushered him out and turned to SIL and said "you can take him away now". We made light and had a chuckle as they presumed Dad was from the geriatric ward, but its no way to treat anyone Link to comment Share on other sites More sharing options...
Brodies Mum Posted December 18, 2009 Report Share Posted December 18, 2009 (edited) I am so sorry to hear that you as a family are going through this ordeal. I too had problems with hospitals when my father was dying (unfortunately caused through Macmillan Nurses) and my Dad's GP was fantastic. I had been told to find my father a nursing home as he didn't fit the criteria for a hospice. The fact he had bowel cancer and was dying didn't seem to carry any weight with the McMillan Nurse's opinion. He in fact never made it to the hospice as when I got back from the meeting arranged by Dad's GP he had slipped into a coma. I refused for him then to be moved. Have you been in touch with your fathers GP? I am sure he/she will be mortified to hear that someone who was referred back in June is still not being treated in a satisfactory manner. It would just be another avenue to explore. I wish your family well and hope the appointment sorts a few problems out. It is hard enough coming to terms with the reality of his illness to cope with all this as well. Alison Edited December 18, 2009 by Brodies Mum Link to comment Share on other sites More sharing options...
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