I don’t know what has come over me recently but I am just starting to raise my head above the parapet. Which, considering I was first diagnosed in 2003, does make you wonder what I’ve been doing in between my 6 operations (MOAS in 2009), 3 rounds of chemo, radiotherapy, rounds of IVF and — oh, yes — that ‘miracle baby’ who is now 6 years old and in full teenage strop mode.

Representing Pseudomyxoma Survivor at a Cancer 52 event

Dawn and Susan

I have never wanted to be defined by my cancer as it’s not who I am but what I have got. As a result, I don’t often tell others about it. However, when we were first asked to get involved with the awareness music video, something clicked and I thought this is important. We must get the message out there, people need to know about this disease and develop the right treatments to deal with it. As someone recently said to me ‘if we (as in the patients and carers) are not raising awareness who will?’.

So, when Dawn Green asked for a plus one to attend a meeting at the House of Lords, I jumped at the chance. To be perfectly honest, at that stage, I was more excited about seeing the building and the prestige of going rather than what the meeting was about. Even when I saw the agenda I thought blah, blah, blah and don’t these people like anagrams? On the agenda alone we had – SSCRG, NCIN, CEO, AMMF, SACT, IBTA.

Dawn and I met up for the first time in St Pancras station, where we decided that brunch with a glass of wine was called for (well I had been up since 5am!) and we then made our way to Westminster.

The meeting was hosted by Cancer 52, who I was unaware of until then. They are a charity that represent rare cancers and have a close relationship with Cancer Research and Westminster. Now here is where it gets interesting — a rare cancer is classified (by Cancer Research) as 2 per 100,000. Awe as we all know, we are “1 in a million“. The fact that we PMP representatives are even there, let alone sitting at the top table, is down to the relationship Dawn has with Cancer 52. Amazing.

Cancer 52 get their name from the fact that 52% of the incidence of cancer are ‘rare or less common’ types of cancer. Cancer Research think it may be 53%. Which means that less common cancers account for the majority when combined together versus the big 4 (prostate, colorectal, lung and breast). Guess where the funding and research is going?

Cancer 52 have three main aims:

  1. Refreshed cancer strategies across the U.K.
  2. More research into rare and less common cancers
  3. Early access to modern treatments and services

I also didn’t realise that a lot of work is going on with the National Cancer Intelligence Network (NCIN — I’m get the use of acronyms now!) in classifying cancers. If we are not classified who will take notice of us? To be honest in this section lots of stats and jargon were used and were just a tad over my head.

However, we also had a talk from Harpal Kumar the CEO of Cancer Research — what a lovely man and really quite easy on the eye (or was I still in a wine haze?). He spoke about the work Cancer Research are doing on rare cancers this year and the government Cancer Taskforce and I really got the impression that rare cancers are firmly on the agenda and gaining momentum. That has fired me up. We need to be on this bandwagon or we may miss our opportunity. If we don’t — who will?

 

Introducing Susan

Susan has recently come on board as a volunteer with Pseudomyxoma Survivor. We don’t feel any more introduction is needed as she has said it all so well herself xxx

 

 

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