A box to be ticked

Hi so sorry to hear about your terrible week, I really hope you get the situation sorted, we definitely don’t need things like this to happen when grappling with these horrible illnesses.  Hopefully you get back on to an even keel soon and sending you as much strength as I have in the meantime, love h xxx

Hi Johnty, sorry to hear you're facing all these barriers at such an important time for you to feel you are trying to get things in order. And you're right, you definitely don't want to be spending time doing pointless things which won't benefit you but someone else. 

I do wish we were were treated more holistically. Sometimes it's hard to know if you're asking the right thing to the right person. There's no joined up approach between departments/professionals. It's not to anyone's benefit.

I do hope  things get sorted out

X

Hi Johnty, I think you should indulge in self pity more often. You are always there for others with a genuine response, not afraid to say things plainly. I am not as far down the path as you are, but looking ahead, what scares me is becoming a cog in a system which is impersonal and where my humanity is lost in the medical and technical system. Sadly, sometimes it seems the staff can lose their humanity too, in a system which is overstretched, overstressed and too focused on "treatment" at the expense of some simple listening, caring and understanding. Just being seen as a real person is so important, not as a "x" type of cancer or whatever. Self protection must play a part in a mechanistic response, but that self protection does harm to the patient and the medic as well. It is good that you have caring people around you, and there are staff who do put their and our humanity first, but sometimes it feels like they are swimming against the tide. You are right that you have to take control and make your own decisions, but it would be nice not to feel you are having to fight a system to do that. Hope the week is getting better whatever that may mean.

Much love

I was due to see the senior consultant today but last week told them it was just too exhausting to spend hour and half travelling (the round trip) being pushed in wheel chair all through hospital (her office is is an especially inconvenient place) just for a 15 minute chat, when I have been through all the issues with the doctors I see regularly.  They didnt argue. We have a right to informed consent and the same right to refuse treatment. 

At the moment I feel my regular doctors are listening to me and seeing the whole problem. Problem comes when I have to see a junior one who just looks at my counts and not at how I actually feel. 

Tessa

Thank you all for your kind and thoughtful responses, it really lifted my spirits to come back from the hospital and know you all cared enough to reach out and comfort me. I am having a ct scan on my back on Thursday, as they suspect my cancer may have spread there due to me have agonising back pain and a plasmacytoma on my eyelid, all signs of more disease progression. I’m not scared as it was inevitable given the aggressiveness of my condition. Just knowing you are all here if I need support means the world to me.

Hi

I am sorry I am so late to your pity party - and glad to see that it’s mostly over now. 

I don’t have anything to add really. Just a big hug. I hope your CT scan gives you the information you need to make whatever decision is right for you 

xxx

Dear, no worries, I’ve saved you a bit of the cake from the party L.O.L I’m back on the high dose steroids hence the reason I’m still awake and currently painting the ceiling with out the need for a ladder (ie high as a kite ) I’m hoping not to have a bumpy landing later on in the week.

Hi

Ah yes! Steroids have seen me tackle some jobs. I remember climbing a ladder to cut back a tree in my garden with a handsaw. 

Wishing you a smooth landing 

xxx

Just read this article in the Guardain, and it shows how there is a possibility of not suffering a box to be ticked approach. It is written by a hospice doctor and does deal honestly with death, so a warning to anyone who is not wanting to confront that yet. But it is an uplifting article from my point of view.

www.theguardian.com/.../all-that-is-good-in-human-nature-is-here-rachel-clarke-on-life-and-death-at-her-nhs-hospice

Dearownedbystaffies

thank you very much for that article it was very interesting and shows the importance of talking to people who have the right soft skills to help you. My palliative care doctor at my local hospital is excellent, I can talk to him openly and honestly about anything I like and I always feel like a burden has been lifted off my shoulders after our conversations, It’s the same at the hospice. Death is a process that needs to be sensitively handled not just for the patient but also for family members.