Thursday, 24 July 2014

Of Lobbying and Pythons

Been a little while since I’ve posted so it’s about time I knuckled down and did another one!

I have been on my adventures with visiting Parliament again, this time with the Brain Tumour Charity and Brain Tumour Research to lobby an all-party parliamentary committee about research funding. The aim was to plead the case that funding for brain tumour research is woefully short of what is needed, and the importance of ongoing research looking at viable treatments, tumour types, aetiology etc.  The case was put by experts working in the field, including Dr Nathan Richardson, Head of Molecular and Cellular Medicine at the Medical Research Council and Professor Sebastian Bradner, Professor and Chair of Neuropathology at University College London and what they got back, I feel, was a load of old flannel about the issue. 

My memory is letting me down as I write because I cannot for the life of me remember who the government lackey was to respond and we were also joined by the Rt. Hon David Millets MP who is the Minister for Universities and Science. There has to be a quorum of MP’s to oversee these meetings (3) for the first 35 minutes at least. Anyway, cutting a  very long story short, the bods made a solid point about funding for brain tumour being about £3.5 million (which wouldn’t even so much as get you a garden shed in certain parts of London) compared with other cancer research programmes receiving about 10 times as much.

The problem seems to stem from the fact the application for research funding (which is also in part looked at by the pharmaceutical companies) is a very difficult process with so many trying to get a share of a small pot. Usually charitable donations are matched by the govt but we don’t even come up on quite a few people’s radar for that sort of thing. Whilst it is true that Breast Cancer, Leukaemia, bowel cancer, oesophageal cancer etc are more common, it was restated that malignant brain tumours are still one of the biggest killers for the under 40’s and the huge differences between paediatric tumours and adult ones and can vary in type and effect. 

The fact is, with the greatest respect, the others have only one or two cell types to research, but with the brain there’s over 120! The other problem (and this was a big issue with diseases such as Parkinson’s) is something called the blood brain barrier, which is a natural protection of the brain where certain toxins are blocked from entering the brain and spinal cord.  The problem is that a lot of chemotherapy is affected by this and part of the problem is finding more effective treatment.  The cells themselves cause problems, such as there’s one hell of difference between say my type of tumour, where it arises out of the meninges, the inner layer of three membranes that surround the brain and spinal cord, to a glial cell in the brain matter itself. There are other factors to consider such as age, impact on other parts of the brain and the body, damage, toxicity and side effects which for most, comes on top of having surgery and radiotherapy.

But even so, part of the flannel we got back was how we would benefit from results of other cancer research which is also true, to a point but still that does not cover the unique nature of the brain and anything that affects its cell growth, type and function. Even with my slow growing Algy, the fact alone tumours form in an encapsulated space  is a huge danger in itself with the resulting damage to surrounding tissue and even though the word ‘benign cancer’ which is used, is meant to reassure the patient, it is still a cancer by location.

There were so many points raised but I wonder if the Government use put off tactics to discourage applicants? Certainly the Govt representative was very repetitive with his answers so no assurances were made and came across to be as being a little dismissive, but they would look into the matter. 

What puzzles me in Parliament, several MP’s have had family members and others suffer brain tumours, and of course there was the greatest politician in my eyes, Mo Mowlem, who even with her terminal brain tumour, managed to bring much needed resolutions to the political problems in Northern Ireland. Surely in her memory there could be a greater political sympathy that could honour her achievements. I was going to raise that point, but didn’t as that’s a whole different issue.

Summary of Points:

Research needs to increase to look at the processes of cell mutation and causes. More support needed from other charities out in the cancer field to support our own with fund raising.
Need to look at the chemical interactions of Chemo and how this can affect any future treatment.

It is acknowledge that there is a high attrition rate for funding applications, but it is felt applications for brain tumour research are probably being deliberately overlooked in favour of other applicants.

We understand that a robust case has to be presented for research and what could be useable result. Is there going to be any immediate benefits? I.e. what’s in it for us and can we make money out of it!

My own personal opinion is that we really could do with more clout politically and in general. The cases put were on the spot and people are dying as a result of lack of knowledge and I have to say lack of awareness, which was brought up in another meeting and to be looked at again in September. I think also because we are rather in the minority we are going to lose out to the bigger charities such as Cancer Research UK who do *not* have our best interests at heart, but smaller charities involved with brain tumours are doing a sterling job but we need more. 

I still have a huge problem with the statements brain tumours are rare but a large cancer killer none the lass. It doesn’t seem logical to me, you can’t have both so would like to see more robust statistics with that.  I know of at least of 9 people in Penzance who have tumours, some sadly dead and a couple incapacitated. In this last week I have passed on details of the Brain Tumour Support group to a person about to undergo surgery and a 19 year old man who has just been diagnosed.

Also our local MP, Andrew George’s brother had one. These in particular I am going to follow up on because I know what it’s like to go through the processes and come out with arms flapping, not knowing what the hell to do next. The clout needs to be across the board and influential as well as from local groups. Also it is my personal opinion,that the brain tumour community need to be more cohesive as a united front as numbers do count.

One of the Brain Tumour Charity’s patrons is actress comedian Dawn French, with our group one of our patros is actress Tracy Childs who nursed her husband singer Tony Anholt who died from his. We could do with more media and entertainment support, more political support. There is already international support with the International Brain Tumour Alliance and various academic and research institutions but still more cash and awareness is needed which is why personally I’m putting my big mouth to use and shouting very loudly about this.

We.Need.Your.Help.And.Support.

End of!

You can read the report presented to Parliament by Brain Tumour Research here:


Other bits.

There is a campaign called ‘Head Smart’ to raise awareness about brain tumours in children and they have produced leaflets to Pass on to schools, libraries, etc. They are also asking for support from local MP’s to encourage this campaign to be taken into the communities. We also need one for adults as well and this is being looked at I think and should come up in the next APPG meeting.

I am still trying to get info for my book about other people’s experiences with brain tumours, and have sent out 19 questionnaires but so far had three back plus one eventual refusal because the email attachment apparently was infected with malware, but I did not know this until I contacted the person concerned. So please, please, please if you have one, fill out the bits you want to share and send it back soon. If there are *any* problems, please let me know as I can’t help otherwise. I want my book not just to be about my story but yours as well, to be a voice and I can’t do that without your help.

My condition remains ‘stable’ except I have put back on a lot of weight – 30 lbs - by falling off the wagon so to speak, but have also had bloods taken for hormones and endocrine stuff, as it is possible my pituitary gland maybe affected, plus there is the ‘milestone’ (no pun intended) of now having that great indicator of middle age, gallstones! I have an appointment on the 14th August so I can be referred for an op to remove my gall bladder. Joy. Not!

Philosophy with The Bruce Academy at the O2. 
But despite there being improvements such as my seizures not being so intense or frequent, my memory has got a lot worse and I am also getting very clumsy again. Not so much with falls this time but with knocking things over, dropping and not being able to organise myself so well. In the last couple of days, I sent a display of books flying off a shelf in Waterstones in their Piccadilly store, dropped a suitcase on my foot, can’t seem to eat snacks or food without wearing most of it. I feel it too and can’t seem to control it with things being dropped, etc and to me there is some cognitive impairment. It can also be a sign of middle age and menopause but the radiotherapy will have brought these on as it can age the brain, add in to that my mum has Alzheimer’s Disease now, that’s one possibility of my future I’m not really relishing if I get that far.

My finances are in the crapper but you know what, I don’t care about that much to be honest. So long as the bills get paid and we still have a roof over our heads plus cat food for Sizzle, we’ll get by. In a way I’m having a ball, with trips to London to see our dear Ben Miller in various shows, twice with his comedy partner Alexander Armstrong that was fantastic, lobbying Parliament (which makes me feel *so* important…LOL!) helping out with a support group, advocating for a friend, steam rallies (yep it’s that time of year again!). Out comes the tent, willies, sunscreen, mozzie killer and Dave’s fabulous steam models! Plus my crochet to keep me going while I supervise the model and Dave goes off to the beer tent…LOL!!

I’m on the train now (stuck as usual due to signals) back home after seeing the last Monty Python live show ever, and tomorrow, sadly have a funeral to attend.  I know I am going to be shattered next week as when I get too active I tend to hit a brick wall, get very down and exhausted very quickly as fatigue is a part of this. I do tend to push myself even now but it’s just I have a chance to live a life that before was ruled by shifts and protocol, but I also have to accept and deal with the consequences of that.

And of course, there’s David to consider as well.

We’ve been together for 27 years now, nearly 23 of those married and I’m coming to realise how I much I do take him for granted sometimes. He’s a quiet but solid man who allows me a lot of freedom with my wanderlust and has always been that way. I want him to be more independent too as we’re both getting older with more medical problems that could keep a student doctor going for a few weeks. 

It’s true to say there are less days ahead of us than behind, and I know there will be a point where one or both of us will be incapacitated. Which brings me on to another, perhaps, less cheerful point – getting one’s affairs in order so I am going to encourage him to make a will (I already have done this for myself) and the two of us to draw up enduring power of attorney for the other. I've seen all too often the difficulties that occur when this hasn't been sorted and the resulting legal hassles can take months, if not years to sort out. Even though I’m up to my eyeballs in overdrafts etc, dead I am worth a bit which can pay off the mortgage. 

My biggest fear is David not having a roof over *his* head. That has worried me more since the start, more than even having a permanent guest inside my skull. I want to spare him as much as I possibly can, the legal hassles from bereavement, as if I pop my clogs before he does, he’ll have enough to contend with as it is. I want to know he will be cared for when I gone until, as is my spiritual belief, we can meet again in the afterlife.

But still I am also going to make sure we have fun and live a bit. Dave’s coming round to the idea of getting out more rather than just end up in a town pub. We’re both involved with The Ritz and will be until it is handed over to its new owner in a year or so. So really life ain't so bad for the minute, for which I am very, very grateful.

As the song says "Always Look on The Bright Side of Life", so I will do my very best to do that.

Anyone for an Ex-Parrot? A Norwegian Blue one...?

No comments:

Post a Comment

Please Feel Free to comment, but no flames or profanity!