Sunday, 10 November 2013

Algy's Demise - Thoughts On the Hammer Out Awareness Day in Plymouth 9th Nov 2013

This is my entry to Facebook this evening. Edited for here.

Had a good day today at the Hammer Out Awareness day in the Mustard Tree Centre at Derriford, where support for cancer patients is given. Sadly though and this must be addressed by all medical and ancillary parties, it has come across very loudly that those of us with low grade tumours that are classed as 'benign' or below a stage 3 are often not given support because our tumours are not aggressive enough. There were so many there today have suffered badly with their 'benign' tumours; yet appeared to be dumped after treatment is given and had to really struggle to get support. 

Me, Julie Liddle, Robyn Teague, Katrina Pearce, Ann Coles at the meeting.

Personally I am glad I decided to be treated at the Royal Marsden because I have had the support there which I don't think I would have had at Derriford. I also had to put my foot down a bit about getting treatment as my symptoms were getting worse but there was a reluctance to start it. Please be reassured though that the Oncology Clinical Nurse Practitioners themselves at Derriford are brilliant, but they're not always being advised of those with low grade tumours who have had (often extensive) treatment but have been left with very little or no support afterwards.

Thinking about it now, my heart is breaking because I revealed to the group how I had to basically sort out my own 'rehab' as (I have been told) there is no vestibular trained physiotherapist in Cornwall and had to hunt for support via the internet, which took some time to do as well as coping with the loss of my career etc.

Right now, as brilliant as the meeting has been, in the last hour or so having thought about what has been discussed today it has opened some old wounds and brought back memories of feelings of fear, frustration, loneliness, hopelessness and being useless and am actually shedding a tear as I write this. I wish I could have found Hammer Out sooner. But my family, friends, all of you here were and continue to be brilliant with your support and I wonder if I would have fared so well without it.

Lets hope that the Cornwall support groups that a friend and I will be involved in will help those affected. Next task is to get the info out there but any Penzance GP here, I'm going to ask a question, although I have passed on info about Hammer Out and the support groups, why aren't the notices being displayed in your waiting room notice boards? Such a simple thing can help someone though a terrible time with their brain tumour, non-malignant or not.

Again for me it is the sadness that those of us with low grade tumours (I *hate* the word 'benign' and refuse to use it now) are not always getting the support needed for coping with diagnosis, impact on life, aftercare etc. For those with high grade tumours, I am glad to say the service in my area is usually impeccable as it should be.  But low grades have the same issues, treatments etc and can still die from theirs. Although treated as oncology patients, we often don't count as 'cancer' patients as that is technically a term to describe malignancy.

In my opinion and it has been said, whatever grade you are, the words 'Brain Tumour' changes you no matter what level of seriousness and I think that term alone should be unified and at the same level in terms of availability and in the quality of support to *all* brain tumour sufferers.  

A small but prime example of this is that there is a journal called 'the grey book' that is similar to the one brainstrust issues, for brain tumour patients at the Mustard Tree Centre, issued by MacMillan, but only those who are a stage 3 and above. Yet we can all have the same issues etc and that has hit home the unfair divisions between low and high grade patients. 

I think this should be discussed in all groups and flagged up by the larger brain tumour charities as there are dependencies (in my neck of the woods certainly) with the quality of aftercare. I mean it's hard enough at the best of times to get a diagnosis, never mind as to what stage and coping with the impact on one's life. 

Also just read on FB that there is a medical professional who refer to low grade brain tumours as 'malignant by location' which I think is a better term and prescription.

Opinions welcomed on this one.

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