It's been a funny few weeks, on the 4th of May we lost our eldest dog, Tyke, thankfully she died in her sleep, we knew it was coming on Sunday as she wasn't very well. She was just a couple of months under 14.
It's strange as I always thought she would outlive me and I use to worry sick about dieing and the dogs not understanding. I am a strange person as I cry more over the dogs (had a few) dieing than I do over people, why is that. I put it down to the Dog not understanding what is happening. Bless her, my tears were running over her when I went to bed. Part of hubby and I wanted to stay up and sit with her to the end but we knew she would hang on while we were there, all she was doing by that time was concentrating on breathing. On the morning before she was picked up we kept stroking her and giving her a love and I was sure more times than not that she was breathing. Even Chris and Lorraine came up to say their goodbyes and give her a kiss. The other night was the first time since her death that I went to get their evening biscuits, I picked out two and looked for Tyke and broke down in tears yet again. Her ashes will be buried under her favourite tree in the garden
The following weekend I went to a spiritual workshop, it was excellent but by sitting for 3 hours at a time my side was in agony. I popped more morphine for breakthrough pain than I have had to in ages. The same again on the Saturday, but in the afternoon I had something given called Trance Healing. The Medium (called Brian) was superb and on Sunday morning I woke up without any discomfort, it lasted all day. Monday became a different story
I had an appointment to see a Chest Physician, my Doc had made the appointment (I think) when he organised the Bone Scan. We went along to the Hospital for a 9.30 appointment and already the doctors were running an hour late. The small waiting area was full of people coughing and sneezing so I asked if I could reschedule, plus the pain was intense and I didn't want to sit in the same position for another long session. The nurse pushed me in (sorry to those others waiting) and it seemed he was at a loss as to why I was there
I have him the history of the recent events and then he decided that I should have a Network MDT, at last I will finally, after nearly 5 years, have some backup. But the oddest question was put to me, who was responsible for my funding
I mentioned that I needed IMRT (Tomotherapy) together with radiation for the drain sites. He seemed to dismiss the drain sites, again saying it was an old practice that was no longer carried out. I responded by telling him to read all the stories on Macmillan's and other cancer sites, where the sufferer who didn't have this had ended up with seedlings tracking up to the surface
Once again it seems that I have to prepare for a battle to get what the surgeon deems important. I have heard back from Cromwell and have sent the information to my oncologist and surgeon. I think John (Surgeon) will ended up dealing with sorting out the Tomopathy
A lady tracked me down to where I work to find out about UCLA for her father. He has gone the American treatment route by having the lining removed first then onto Chemo. He is looking into cyberknife as well as cryo-ablation. I was quite jealous when he was telling me he had no pain from the operation and here I am suffering. Good luck to which ever route he goes but I will keep you posted as to his decision and maybe we will have more info on the cyberknife if he goes that way. You know me anything new on the market and I will always publish the info. When I looked into the cyberknife at Harley Street, they informed me that delivery would not be till Feb this year so my research stopped there.
I went to see my pain management Doc today and he was explaining why the pain is getting worse, as the numbness wears off the raw nerves are pushing forward and coming into contact with other tissue which causes pain. Together with my fractured ribs that are now mending, he told me to expect more pain. Once the trauma pain has settled the repairing pain kicks in and can be worse than the operation itself. I whole heartily believe that as I have more pain in my side now than I did in hospital. The good news is that my haemoglobin is back at 12.9, but I am over doing it so I promised I will cut back a few hours from work and try and relax more.
Downing Street, fingers crossed, on Wednesday. Between my friends and yours truly we have collected 1,090 signatures to add to NCARD's 21,000. I can't believe the hard work some friends have done. I think the award for the most collected goes to my aromatherapist, Joyce, she did an excellent job with over 300, followed closely by my district nurse Linda
I have had some good reports from the meso circle where the chemo is working and doing its job, its nice to hear some good news for a change.
Chris Knighton held her annual ball last Saturday night, what an excellent evening it was, even though I had to leave early, it was nice to see some familiar faces. Debbie had made the journey up once again and looked fantastic. Her tumour has now reduced 73% and the petition to have Prof Vogl come to England is going ahead. So well done Debbie.
Well I think I will try sleeping again, I wouldn't care but I took a muscle relaxant tonight as well as I knew I would have difficulty relaxing and getting to sleep, yet here I am at 4.00 am talking to you. Lexi got up with me, sat with me while I had hot chocolate and a few cadbury's fingers, yes I did share with her, but the minute I turned the computer on she sneaked back up stairs.
Take care everyone and keep fighting on, your life is ultimately in your own hands.
Jan
It's strange as I always thought she would outlive me and I use to worry sick about dieing and the dogs not understanding. I am a strange person as I cry more over the dogs (had a few) dieing than I do over people, why is that. I put it down to the Dog not understanding what is happening. Bless her, my tears were running over her when I went to bed. Part of hubby and I wanted to stay up and sit with her to the end but we knew she would hang on while we were there, all she was doing by that time was concentrating on breathing. On the morning before she was picked up we kept stroking her and giving her a love and I was sure more times than not that she was breathing. Even Chris and Lorraine came up to say their goodbyes and give her a kiss. The other night was the first time since her death that I went to get their evening biscuits, I picked out two and looked for Tyke and broke down in tears yet again. Her ashes will be buried under her favourite tree in the garden
The following weekend I went to a spiritual workshop, it was excellent but by sitting for 3 hours at a time my side was in agony. I popped more morphine for breakthrough pain than I have had to in ages. The same again on the Saturday, but in the afternoon I had something given called Trance Healing. The Medium (called Brian) was superb and on Sunday morning I woke up without any discomfort, it lasted all day. Monday became a different story
I had an appointment to see a Chest Physician, my Doc had made the appointment (I think) when he organised the Bone Scan. We went along to the Hospital for a 9.30 appointment and already the doctors were running an hour late. The small waiting area was full of people coughing and sneezing so I asked if I could reschedule, plus the pain was intense and I didn't want to sit in the same position for another long session. The nurse pushed me in (sorry to those others waiting) and it seemed he was at a loss as to why I was there
I have him the history of the recent events and then he decided that I should have a Network MDT, at last I will finally, after nearly 5 years, have some backup. But the oddest question was put to me, who was responsible for my funding
I mentioned that I needed IMRT (Tomotherapy) together with radiation for the drain sites. He seemed to dismiss the drain sites, again saying it was an old practice that was no longer carried out. I responded by telling him to read all the stories on Macmillan's and other cancer sites, where the sufferer who didn't have this had ended up with seedlings tracking up to the surface
Once again it seems that I have to prepare for a battle to get what the surgeon deems important. I have heard back from Cromwell and have sent the information to my oncologist and surgeon. I think John (Surgeon) will ended up dealing with sorting out the Tomopathy
A lady tracked me down to where I work to find out about UCLA for her father. He has gone the American treatment route by having the lining removed first then onto Chemo. He is looking into cyberknife as well as cryo-ablation. I was quite jealous when he was telling me he had no pain from the operation and here I am suffering. Good luck to which ever route he goes but I will keep you posted as to his decision and maybe we will have more info on the cyberknife if he goes that way. You know me anything new on the market and I will always publish the info. When I looked into the cyberknife at Harley Street, they informed me that delivery would not be till Feb this year so my research stopped there.
I went to see my pain management Doc today and he was explaining why the pain is getting worse, as the numbness wears off the raw nerves are pushing forward and coming into contact with other tissue which causes pain. Together with my fractured ribs that are now mending, he told me to expect more pain. Once the trauma pain has settled the repairing pain kicks in and can be worse than the operation itself. I whole heartily believe that as I have more pain in my side now than I did in hospital. The good news is that my haemoglobin is back at 12.9, but I am over doing it so I promised I will cut back a few hours from work and try and relax more.
Downing Street, fingers crossed, on Wednesday. Between my friends and yours truly we have collected 1,090 signatures to add to NCARD's 21,000. I can't believe the hard work some friends have done. I think the award for the most collected goes to my aromatherapist, Joyce, she did an excellent job with over 300, followed closely by my district nurse Linda
I have had some good reports from the meso circle where the chemo is working and doing its job, its nice to hear some good news for a change.
Chris Knighton held her annual ball last Saturday night, what an excellent evening it was, even though I had to leave early, it was nice to see some familiar faces. Debbie had made the journey up once again and looked fantastic. Her tumour has now reduced 73% and the petition to have Prof Vogl come to England is going ahead. So well done Debbie.
Well I think I will try sleeping again, I wouldn't care but I took a muscle relaxant tonight as well as I knew I would have difficulty relaxing and getting to sleep, yet here I am at 4.00 am talking to you. Lexi got up with me, sat with me while I had hot chocolate and a few cadbury's fingers, yes I did share with her, but the minute I turned the computer on she sneaked back up stairs.
Take care everyone and keep fighting on, your life is ultimately in your own hands.
Jan
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