PART 8: Up to Date
So, on 31 Jan 2019, Sheila completed her recommended chemotherapy and rang that bell. Happy days!
On that same day, having had my unsatisfactory reply from Mr Spencer, the Chief Exec of The Christie, I asked the PALS team for a meeting to discuss that response and I'm still waiting for that meeting. Perhaps they are hoping that I'll just go away and they won't have to sit with me and explain why they continue to avoid answering my awkward questions. I'm not going away though. Today, I have been back in touch with The Christie and reminded them that I asked for a meeting...
Sheila got the "all clear" (but maybe, not quite - still a question to be answered on that) from The Christie in the middle of February and is now 2 months post chemo, slowly recovering from that onslaught. She still sleeps a lot, suffers from neuropathy with tingly, cold feet and hands and now, chemo induced osteoporosis in her spine (nobody mentioned that as a side effect!), a worsening hernia around her ileostomy, both of which are quite debilitating and then her mum died, just to make it a perfect storm for us. The good news is that she is due to have her ileostomy reversed and her hernia repaired on 2nd May. Maybe, just maybe, after her mum's funeral and her reversal, we can slowly rebuild our lives together. Whatever it brings, we will do better than just cope. We are strong together and we are surrounded by a loving family and our friends who matter so much to us, near and far.
Back in mid January, just after Sheila had to be swapped onto Raltitrexed, I contacted the charity, Bowel Cancer UK, to see if they would be interested in taking up my cause. They said I should email them, which I did. They also told me to post my concerns and tell our story on their community website to see if anyone else had the same issues, which I did. I also sent them a list of over 50 research papers I had read by that time (it's more now).
Below, you can see a short email thread of what I asked the charity:
Unfortunately, I can't show you the post I put on their community website because after it had been there for about a week, they shut it down because they said it was upsetting people and that their priority is the well-being of their members, but I can show you their response below:
I was really shocked to have my post shut down - no-one had been engaging with it as far as I could tell, but they must have been complaining about it unbeknownst to me. I fully understand it is a subject of concern and there is no easy way of saying it - it concerned me! but to take it down prevents discussion of the topic. If BC UK truly had the wellbeing of their members as their priority, wouldn't you think they would have the courage to allow discussion on the matter? They did after all, tell me to put it on their community website. I find their attitude very unhelpful and somewhat immature perhaps. If people were upset by it, all the more reason for them all to start asking their oncologists about it!
After the post was taken down however, I had some very supportive private messages from
other members who were interested in what I had to say and weren't upset about it and I continue to help them behind the scenes.
I am a little more pleased with the Macmillan charity however. I had previously put a similar post up on their community website, whilst in parallel, writing to them about it separately. They have had the courage to leave my post there and slowly, it has been gathering more and more support and thanks for sharing such a well researched post and asking for help. Should I assume that the members of the Macmillan community are not such sensitive flowers as those that inhabit the BC UK community pages?
Here's what I put up:
What I am not pleased about however, is that neither charity are interested in promoting the subject. Neither want to challenge the status quo and have referred me on elsewhere, just like The Christie. #kickthecandowntheroadwhynot-dontembarrassus
What I notice about all the responses to my questions, is that no one has told me I am talking rubbish and that they just want to palm me off onto someone else. That suggests to me that that is so they don't have to admit that they should be doing TDM but don't.
Why does no one have the courage to engage with me on this topic?
I have also been in touch with NICE and asked them what they have done in the 4 years since they made their recommendations to move the subject on (apologies for the blank second page - couldn't get rid of it):
They keep saying it's going to take a while more to answer, so I have poked them again and said that if they don't reply soon, I will be raising a complaint - how to win friends and influence them LOL.
I might just add here, that whilst I am asking NICE what they have done in the last 4 years on the research front, I don't believe any further research is necessary and I'll explain why in a future blog as well as outline how TDM could be run alongside national guidelines without changing them.
I have more to do! keep coming back to find out my next moves and the answers I get to the irons I still have in the fire...
Next time, I want to tell you a side-story, which is relevant, about the response I got from Sheila's IBS team after asking them why they didn't pick up on her cancer three years ago.
Also, don't forget to follow this blog!
On that same day, having had my unsatisfactory reply from Mr Spencer, the Chief Exec of The Christie, I asked the PALS team for a meeting to discuss that response and I'm still waiting for that meeting. Perhaps they are hoping that I'll just go away and they won't have to sit with me and explain why they continue to avoid answering my awkward questions. I'm not going away though. Today, I have been back in touch with The Christie and reminded them that I asked for a meeting...
Sheila got the "all clear" (but maybe, not quite - still a question to be answered on that) from The Christie in the middle of February and is now 2 months post chemo, slowly recovering from that onslaught. She still sleeps a lot, suffers from neuropathy with tingly, cold feet and hands and now, chemo induced osteoporosis in her spine (nobody mentioned that as a side effect!), a worsening hernia around her ileostomy, both of which are quite debilitating and then her mum died, just to make it a perfect storm for us. The good news is that she is due to have her ileostomy reversed and her hernia repaired on 2nd May. Maybe, just maybe, after her mum's funeral and her reversal, we can slowly rebuild our lives together. Whatever it brings, we will do better than just cope. We are strong together and we are surrounded by a loving family and our friends who matter so much to us, near and far.
Back in mid January, just after Sheila had to be swapped onto Raltitrexed, I contacted the charity, Bowel Cancer UK, to see if they would be interested in taking up my cause. They said I should email them, which I did. They also told me to post my concerns and tell our story on their community website to see if anyone else had the same issues, which I did. I also sent them a list of over 50 research papers I had read by that time (it's more now).
Below, you can see a short email thread of what I asked the charity:
Unfortunately, I can't show you the post I put on their community website because after it had been there for about a week, they shut it down because they said it was upsetting people and that their priority is the well-being of their members, but I can show you their response below:
I was really shocked to have my post shut down - no-one had been engaging with it as far as I could tell, but they must have been complaining about it unbeknownst to me. I fully understand it is a subject of concern and there is no easy way of saying it - it concerned me! but to take it down prevents discussion of the topic. If BC UK truly had the wellbeing of their members as their priority, wouldn't you think they would have the courage to allow discussion on the matter? They did after all, tell me to put it on their community website. I find their attitude very unhelpful and somewhat immature perhaps. If people were upset by it, all the more reason for them all to start asking their oncologists about it!
After the post was taken down however, I had some very supportive private messages from
other members who were interested in what I had to say and weren't upset about it and I continue to help them behind the scenes.
I am a little more pleased with the Macmillan charity however. I had previously put a similar post up on their community website, whilst in parallel, writing to them about it separately. They have had the courage to leave my post there and slowly, it has been gathering more and more support and thanks for sharing such a well researched post and asking for help. Should I assume that the members of the Macmillan community are not such sensitive flowers as those that inhabit the BC UK community pages?
Here's what I put up:
What I am not pleased about however, is that neither charity are interested in promoting the subject. Neither want to challenge the status quo and have referred me on elsewhere, just like The Christie. #kickthecandowntheroadwhynot-dontembarrassus
What I notice about all the responses to my questions, is that no one has told me I am talking rubbish and that they just want to palm me off onto someone else. That suggests to me that that is so they don't have to admit that they should be doing TDM but don't.
Why does no one have the courage to engage with me on this topic?
I have also been in touch with NICE and asked them what they have done in the 4 years since they made their recommendations to move the subject on (apologies for the blank second page - couldn't get rid of it):
They keep saying it's going to take a while more to answer, so I have poked them again and said that if they don't reply soon, I will be raising a complaint - how to win friends and influence them LOL.
I might just add here, that whilst I am asking NICE what they have done in the last 4 years on the research front, I don't believe any further research is necessary and I'll explain why in a future blog as well as outline how TDM could be run alongside national guidelines without changing them.
I have more to do! keep coming back to find out my next moves and the answers I get to the irons I still have in the fire...
Next time, I want to tell you a side-story, which is relevant, about the response I got from Sheila's IBS team after asking them why they didn't pick up on her cancer three years ago.
Also, don't forget to follow this blog!
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