A foot in both camps

Hi 

A foot in both camps, great description!

As I read your post, I came across a little used word, refractory. It means unmanageable, and it is a word that's very apt as regards my cancer.

As I'm sure you are well aware, I have a blood cancer. My bone marrow is failing and depending on whether someone who has a problem with red cells, white cells or platelets or a combination of either, each cancer is given a name. 

My red cell count is low and my cancer is called Refractory Anaemia (that word again). It's a rare cancer, like yours, and it's a pain in the butt. I look well, I'm often told that, so to have a serious but yet, 'invisible' illness, doesn't give anyone a clue that I'm seriously ill. But what should a cancer patient look like?

Sorry to hear that you have been, and are, very ill. You're a great asset to this community, so knowledgeable and well versed in several cancers.

Keep well Johnty 

Tvman xx

Hi Jane

you are quite right of course. Both you and I have made the decision to engage with palliative care services early and I know it’s helped you and it has certainly helped me. But I think, from conversations with my oncologists recently, that you and I and possibly some others here in this community are unusual. There is still a terrific taboo that surrounds death and dying, and many, many people refuse to admit to the reality of their situation and are ill-equipped to talk about these matters. You’re right in that it leads to traumatic experiences for patients and their families and, I have to say the doctors too. The conversation I had recently with my oncologist was about how hard she finds it to watch patients who do not address these matters die quite unprepared and having made no plans, for example, about what happens to their children. She certainly felt that there were limits about how much she could intervene in these circumstances. We can offer information about palliative or supportive services, she said, but we can’t force patients to take them up. 

In terms of the health service organisation, the person who should hold the ring in all of this is the patient’s GP. My oncology team at the hospital in London keep my GP informed of my treatment progress. The palliative care team at the hospital also keep the GP informed of my interactions with them. It’s the GP who has the overview and makes the referrals to the other services that I need. It might sound odd but the way the NHS is organised and funded, it’s actually quite hard for oncology to refer patients to palliative care. My oncology team at the central London hospital have no knowledge of or contacts with my local palliative care services in Kent. So it really is vital that there is more investment in primary care to support this kind of patient support and make it proactive, reaching out to patients, rather than reactive and waiting for us to come to them. 

That’s my two pen’orth! 

xx

Dear tvman in the world of myeloma blood cancer of which I am a offshoot ,refractory is a oft used word. We have what are called lines of treatment, you relapse then are rescued by a different type of treatment then you relapse again and eventually you become refractory to any kind of treatment and then you just recieve supportive treatments ie blood transfusions and platelets or stop treatment altogether and transfer to pure palliative care. This can go on for many years for some people so you can imagine the emotional strain that puts on patients and  their families. Add to that the tendency to treat blood cancer patients long after it’s serving any useful purpose and it explains why so few engage with palliative services and die in hospital and never even visit a hospice to see what it has to offer. 

Dear I am starting to think we are twins separated at birth as we think so alike L.O.L

I am very lucky that my local hospital is not to big and has it’s own palliative care team, access to in-house Macmillan nurses and the ability to be allocated a community based Macmillan nurses and I have 5 star local hospice so am very very spoilt. However these things did not fall into my lap, I had to engineer my way through a siloed nhs system to get to this point, and this is what I’m trying to change by getting it integrated into a patient’s treatment plan at the appropriate time, as things stand we cannot afford to be passive in these matters, especially when the current culture around death has become resistant to wide debate amongst the populace, it’s only since the beginning of the nhs that talking about deaths has been come unfashionable, before that the notion of a good death was a common goal for patients and their families.