As a secondary breast cancer patient living with an incurable disease, I feel very strongly about wording. Wording like fight, battle and lost/loosing. Words matter.
So, I also think that words matter in care and how we are dealing with the disease. Yes, we have a 2-3 year median life expectancy and some patients are living with and beyond cancer #BusyLivingWithMets with bone metastasis only for example 8, 9, 10 years after diagnosis (quoted by The Global Alliance at their conference) Of course, we cannot confirm this in the UK because we don’t have the data and statistics (see my blog https://www.abcdiagnosis.co.uk/2017/10/if-you-want-something-done-well-do-it-yourself/ ) so we have no idea how and how long we are living by disease type. It’s a general figure of what’s been used for a number of years. It’s a disgrace we don’t have this information. But it’s not chronic, if I have a chronic disease I want to live 10, 20, 30 years later and for us who are diagnosed in our 30’s etc then living only 2-3 years median is a bloody short life sentence.
On this note of living with an incurable disease we are all lumped into one statistic and one word that I don’t like “palliative care”.
Palliative care to me is a negative word. A word that means death. Yes, we are all going to die at some point. But a word that means End Of Life. I have a lot more living to do #BusyLivingWithMets and I do feel that palliative doesn’t explain my disease as the “Supportive Care” label does.
I mentioned this to a secondary breast cancer friend and she said “Before I got a CNS, I made use of my assigned palliative care nurse. After reassurances it wasn’t about end of life care, it turned out that all she wanted to talk about was end of life care. All of my palliative support has dropped off because I’m not end of life yet – calls aren’t returned. So now I just laugh when people say palliative isn’t end of life care – it blatantly is.”
My CNS rang me the other day to speak to me about my current status and I talked about an issue with peripheral neuropathy and she shared that the only places that are supporting this are hospices. I’m not scared of death, I’m not scared of dying BUT I do NOT want my care to be provided in a hospice. I feel like I’ve been written off and thrown out with the rubbish. The label is basically saying we are not worth investing in.
When I attended the Global Alliance Advanced Breast Cancer 5 conference in October 2019 there was a piece specifically about this that MD Anderson had researched what patients wanted to be called. https://mdanderson.elsevierpure.com/en/publications/association-between-a-name-change-from-palliative-to-supportive-c
They reported that if they called palliative care “supportive care” that more patients accessed services. They didn’t want to be labelled as palliative. Neither do I.
I think the NHS need to start thinking about long term survival and how negative palliative care sounds to a patient. It doesn’t give me hope, even though I’m living 6.5 years out of an incurable diagnosis. I will not enter a hospice until I need to. I don’t want my mindset to be associated with a hospice at the moment. We all need some hope in our life and labelling me under palliative care, I feel doesn’t help when I’m living my life and living it relatively well at the moment.
When I had my neck node removal and my sternotomy surgery, I had NO supportive care. This is what p*sses me off about this disease. You are told you get support but to be honest you don’t. There is no pathway for certain surgeries so if you are lucky enough to find someone through your Oncologist who WILL perform surgery on someone “palliative” then we don’t have any supportive care. Nothing – ZERO. I had nothing for my neck surgery with a physio apart from some scar manipulation, I had nothing for my sternotomy surgery. Nothing, absolutely no physio. I made it up, I did my own survival package, ate well, walked, exercised and after 6 months of sleeping on 2 or 3 pillows upright I was able to lie down and roll out of bed. After this surgery, your thoracic muscles are completely shot. I was so weak out of hospital I could not even press a flush on a toilet, and that went on for MONTHS. Two years after surgery I was able to do a 1/2 press up on my knees and I was amazed I could do a headstand in yoga! It’s like the survival of the fittest. Why shouldn’t everyone be given this chance to be able to live well? Why don’t the NHS have pathways to support patients in recovery? Is it because we don’t have a great life expectancy? Why is it I feel completely thrown on the scrap heap? Why do I feel abandoned in supportive care in this fu*king shitty disease? Why does not one ask what is important to ME? Why do you think I include secondary breast cancer patients in everything abcd does especially the retreats?
This is why I continue to do what I do in my own “supportive care” no fu*ker else does it. No one is bothered, we are supposed to be lucky for being alive. We SHOULD be alive; we should be supported. We are worth the INVESTMENT.
Give me the fu*king drugs and I will show you what I can do. I am not dead yet so fu*k the palliative care – I want supportive care.
WE. DEMAND. CHANGE.