Sorry it’s been a while that I updated on me (gosh that sounds selfish!). Firstly let me say that it isn’t because I didn’t want to write or know that I should keep you all informed but more because I’ve been running my little feet off and being busier than a busy thing from busyville… which is pretty busy.
Healthwise – I’m doing OK. No more scans or tests since I last wrote to you (next one is in January) and mostly feeling OK. Am still incredibly tired sometimes and now have some liquid B12 and also sun chlorella tablets, having a) discovered that others diagnosed with phyllodes appear to be given B12 injections to help with fatigue for some time after diagnosis and b) researching and asking questions of people in the know! So, are they working? Yes, I think so, but must remember to take them regularly so effectiveness can really be judged! We’ll see but I know that I can’t cope with the nausea fatigue that I get sometimes and which makes me take to my bed!
Emotionally – Again, I’m doing OK. A few wobbles every now and then thinking about Mum and wondering what she would say to things but also worrying about if the cancer will return. I used to think that it was ridiculous that people after they’ve been ‘cured’ would still worry about it… what I’ve learnt is a) although the surgeons have removed the tumour (so wonderfully) there is still a chance of recurrence, therefore there is never a ‘cure’ but simply a hope; and b) there is rarely a day that I don’t think about it or worry about the pain being more than just a twinge; and c) I now also worry that I’m turning into a hypochondriac – whatever happened to the me that didn’t get ill? So yes, I do have a cry every now and then and yes, I do still worry about it all and yes, I do find myself getting cross with myself that I can’t cope (sometimes).
Physically – Ahem at the risk of saying I’m OK, I’m OK. I still get pain in my chest, sometimes a dull pain, sometimes a burning sensation and sometimes a sharp stabbing. It’s not constant and some days there’s nothing at all. I’m also trying to be good and checking for any new lumps… and there are a few but I don’t really know if I am Miss Lumpy Bumpy (as my consultant calls me) and therefore if this is ‘normal’ or anything to worry about. I did worry about it a few weeks ago but have decided to stop being paranoid pants and monitor the lumpiness with a view to my next check in January anyway. You see I’m not a hypochondriac!
Working – Voluntary. As you know I’m keen that I use my experiences to make a difference for others.. I might not be able to change the world but I can at least tweak it a little bit. I also discovered that the majority of volunteers in the ‘cancer world’ are either retired or work within the health service. This has meant that I’m often the youngest person on the committee/board/group – so hahaha to all those of you who think I’m old! So… drumroll…. my new voluntary roles as part of 1) St George’s Hospital Patient Issues Committee 2) South West London Cancer Network Partnership 3) North West London Cancer Network Partnership 4) Wandsworth LINk 5) Kensington & Chelsea LINk Cancer Sub-Group 6) Patient Reviewer – National Cancer Information Pathways for National Cancer Action Team.
Living Beyond Diagnosis – charity. However the majority of my time is spent achieving a goal – to hold events in London for anyone affected by cancer. The first event I’m in the course of putting together with for anyone affected by breast cancer and will be in London in November 2011 for approximately 500 attendees. I am fully aware of the enormity of the challenge I have set myself and I don’t mind telling you that sometimes I ask myself why! I have no income and am surviving on the remaining money that I received in a critical illness insurance payment which, if I’m careful, will allow me to do this for a year. But you can bet your bottom dollar I wouldn’t be doing this if I didn’t totally believe in the importance of events like this and know, personally, the difference attending one made to my wellbeing. The event will sit alongside the wonderful services that we receive from the NHS, charities and organisations and I hope complement their work and also allow each of them to showcase what they are doing to the attendee audience.
There are the usual admin frustrations, such as the Charity Commission ‘holding our application’ until such time as we can prove we’ve raised £5,000. Not insurmountable however in order to be credible in the marketplace we need a charity registration number and indeed potential sponsors and exhibitors at the event will need the charity registration to evidence where their money is going! There are also a number of fantastic people who are organising events and runs etc who again need the charity registration number for their efforts. More than a little frustrating and has at low times made me wonder how anyone does it!
However I’m yet to meet a single person (private, medical, business or from a charity) who doesn’t endorse what I am doing and reiterate the need for this charity to be set up and the events to happen.
So there you have it… that’s what I’ve been doing. The website will be live soon but there’s a holding page for now from which you can download the ‘mission statement’ for the first event for breast cancer…. http://www.LivingBeyondDiagnosis.com and we’re putting up a PayPal button so that you can donate… however small it will be hugely appreciated – particularly so we can reach the £5k and get the charity registration through too!
Right-o back to work – although am desperate for a coffee and the roads are one big white snowblock at the moment… problem with living half way up a hill! Hmm posh green tea me thinks!