I have been a carer consultant on the Involvement Register since May 2011. I have thoroughly enjoyed this – I’ve been involved in the Food Project, on the Psychological Medicine Service User Advisory Group, visited the Mother and Baby Unit, given presentations for SUITE (Service User Involvement in Training and Education) and also have had a lot of responsibility for SLaM TWIG Ops Facebook page https://www.facebook.com/SLaMTWIGOperations and our twitter feed @slamtwigops helped and supported by Matthew Mckenzie – particularly when I have been unwell.
An Involvement Register colleague, D Rosier, saw a post that I had done on my personal Facebook page and kindly suggested that I do a blog post in order to raise awareness.
I was diagnosed with breast cancer when I was 44 in 2005 and underwent a lumpectomy and radiotherapy. My oncologist told me that I was very unlucky to get it at a relatively young age. My prognosis then was that it was less than 5% likely to reoccur. Last October though the beastie raised its ugly head again and I had a recurrence. Now buying lottery tickets as I keep falling in the unlikely stats so surely I must be due for the unlikely event of winning the lottery! 🙂
This time I have been throwing a lot more at it – bilateral mastectomy, chemo, Herceptin, Letrozole… I have no intention of doing it for a third time.
My lovely son, Chris, has been supportive all through this. Spending time visiting me in hospital, bringing very posh champagne for New Year (bizarrely when you are going through chemo champagne tastes particularly good!), coming to keep me company whilst being filled with toxic drugs (chemo) at an unearthly hour just after Christmas, numerous treats of lunch out – to name but a few things. Typical of my son not only does he want to be supportive but also wants to do something practical to help – and if that involves some crazy sports challenge so much the better!
Chris is doing an ultra marathon at the end of June for Breakthrough Breast Cancer Research http://www.breakthrough.org.uk/ . This is a 100km run (62 miles – more than 2 marathons) which is phenomenal distance to run in one day. It’s along the Grand Union Canal starting at Maida Vale, Nr Paddington and ending in Bletchley, Bucks. You can’t simply just get out of bed on the day and hope to run this far – it involves a huge amount of training. Chris often runs 20 miles after a full (and long)day’s work purely to train for this and aims to run 60+ miles per week to keep superfit. He has trained whilst in Kuala Lumpur on a business trip in extremely hot weather. On 7th April he ran the Brighton Marathon in three hours seven minutes purely as a “training run”. I am so proud of him.
Research is vital. Breast cancer is really sneaky – it has a habit of reappearing several years later when all appears to be well – which is exactly what happened to me. Research is coming along and purely because of good research I will benefit this time from a new “wonder drug” Herceptin. This was a very new drug when I was first diagnosed in 2005 and not widely used. Recent research has shown that even though my cancer was contained I will still benefit immensely from it. If it wasn’t for research this drug would not be available and I wouldn’t have the excellent prognosis I have now.
Chris’s JustGiving page is http://www.justgiving.com/CJ-runs-a-long-way Please take a look just to raise awareness and if you feel like donating too then even better! No donation is too small. All the bits add up!
Matthew McKenzie covered this meeting for us. He did an excellent job!
YouTube video blog: http://youtu.be/2AVu7cP-diI
Transcript of audio and video blog: http://www.scribd.com/doc/205460760/Hear-Us-Open-Forum-Meeting-4th-Feb-2014
Thank you for doing such a great job Matthew!
CoolTan Arts invite you to take part in the public consultation on the future development of the site of our old premises at 237 Walworth Road.
When planning was granted at this site it was on the prevision of a section 106, with CoolTan Arts as the named recipient. This meant that the developer promised include an allocation for community space in any new development.
Currently the proposed planning application is for a shared housing development, something which doesn’t include the promised facilities.
We believe it is vital that any new development must include the promised community space for CoolTan Arts. The Walworth Road needs to have public community spaces, places that provide skilled employment and wages above the minimum wage, allowing people a respectable standard of living. We believe that the area should not be taken over by expensive housing developments at the expense of other facilities and needs.
CoolTan Arts has developed a petition about this and will be contacting the council in Southwark and all our MPS, please add your name: http://www.ipetitions.com/petition/cooltan-arts-community-space-for-237-walworth-road/
Goldcrest the developer is inviting local residents and businesses to a public exhibition to view the proposals on Thursday 24th October between 12pm and 8pm at Chatelaine House, 186 Walworth Road, London, SE17 1JJ.
CoolTan will be attending the meeting between 1-2pm and invite you to join us then to have your say.
If you cannot attend the meeting Goldcrest invite you to share your views by either email: firstname.lastname@example.org or by writing: Walworth Road Consultation, FREEPOST RSBX-ARER-CTYA, Your Shout, The Old Marmite Factory, 1-45 Durham Street, London, SE11 5JH.
You can also contact Southwark Council: Southwark Council, PO BOX 64529, London SE1P 5LX, 020 7525 5000, email@example.com
An audio blog by Matthew of the event at Lambeth Accord on 23 September 2013.
This event was organised by Disability Advice Service Lambeth.
The evening included short presentations on local disability history projects.
It also included presentations by Lambeth Mencap, Carers Hub Lambeth and the Allfie Project.
This blog is really interesting – it relates some of the history behind how organisations such as Mencap started.
It is World Alzheimer’s Day today – 21st September 2013.
An audio blog by Matthew to remind us what an important day it is. Great blog about events happening around the world today and for the whole of September (World Alzheimer’s Month). Useful links to websites for extra information.
Well done Mary, Gill, Sheila, Abigail and Storm!