Wednesday 24 February 2016

The WASPI debate-one womans story



 
Just sayin!
I decided to tune into the discussion in the House of Commons to listen to the debate  about the change to women's pension age. I'm not sure it was good for my health given my current situation as someone recovering from significant surgery for breast cancer. Political point scoring was not what i was looking for, it was the recognition of the need to redress a wrong- a contract unfairly changed.
It's my third diagnosis since my thirties. And each diagnosis has had an impact on my ability to work and on my caring responsibilities.
I was born in the 1950s and recently celebrated my 60th birthday, just two months after finding my cancer had returned. In my twenties I had my children. I decided not to take maternity leave as in those days we had little maternity pay nor child care options and as a nurse I did some work (unpensioned as it was a few hours only) so I could care for my family and use my skills in a job that I loved.  I claimed no benefits (I never have) and worked when I could. My first diagnosis of cancer was when my children were at school. I worked part-time and was studying for a masters degree (self-funded) while having treatment with minimal sick leave. I paid for care to support my children to supplement my own care while I was ill . My father was very ill so I did my best to support my parents too. My health meant I needed to work part-time for several more years than I would have planned. By my second diagnosis my career had developed and I had worked full time for several years. I was working full time as a director for a UK charity, travelling between Edinburgh and London several times a month. I found the impact of further treatment reduced my well-being to a degree I could no longer continue in the job. I felt I had no option but to leave. That decision was influenced too by my mothers decline into dementia and her increased need for support. I decided to become self employed and was fortunate to have the experience, the skills and network that allowed me to secure work that I love while taking  more care of my health. I'm aware that I have options that many women would not have. But the reality is I am the main breadwinner ( my husband has already retired)  and our income dropped in a completely unplanned way. I was also no longer contributing to a private pension scheme. And please note I would not have been able to claim any benefits. I have always worked hard; full time when I was able to and part time when circumstance required as well as contributing regularly as a volunteer in my community.
So bringing my story up to date, as my business has gained respect and stability, but unfortunately I have yet again been diagnosed with breast cancer. Again I have no entitlement for support from the state and it comes at a time when I have reached 60 with the knowledge now that I won't receive my pension until I'm 66. Frankly I'm no longer confident I will get my state pension at all given my medical history.
I share this not to seek your sympathy but merely to point out issues for women like me who have by necessity  worked part-time at stages in their lives, who have been carers, who have grafted since leaving school but feel the injustice of the changes to pension when I have not been able to adjust my plans to allow me to make appropriate retirement arrangements. I mention my health history to also highlight that for women like me there is a double whammy when the benefit system is such that there is no safety net for those who don't qualify for either pensions or incapacity benefit.
I understand the need for equalisation but we have not had equal experience of, or opportunity in the workplace throughout my lifetime. I write this blog not just for myself but for the many women who have only had low paid work throughout their lives and therefore will also not benefit from the new pension arrangements or from private pensions. The WASPI campaign is not asking for sympathy, nor for favours but for justice. This Westminster government likes to talk about supporting grafters, well from one grafter I feel unfairly abandoned by a society which for a large part of my lifetime stood by and accepted the unfair treatment of women. There is an opportunity to give practical transitional help to a group of women caught between two worlds and unable to influence either. Any government that refuses to do that will never be forgiven in the face of a very just campaign.


Thursday 11 February 2016

Nurture not nanny...one womans road to recovery






I had a fabulous birthday and whats more there's a gathering of the clans this weekend and I can't wait to see them all. I recommend distraction when you are in a slow process of recovery. And I do feel stronger but aware too of my fragility. A bladder infection has made this week a real challenge but its clearing now. And the clouds have cleared too, the sun has shone ( even if its freezing as Cara needed her coat) and things are looking up...ish.

I've gone back to doing a bit more on my book which I had paused for a time. And alongside that reading "When breath becomes air" Paul Kalanithi. It's a book by a young neurologist ( and so much more) who finds he has terminal lung cancer. Risky read for me just now maybe but there is so much learning from those who heal and also need the healers. We learn so much about how to care. Of course in a way we have travelled similar journeys and I know the value of being alongside those who know how it feels to have a serious diagnosis. His more serious than mine, but I don't want to hide from my own mortality and maybe part of me wants to understand more about how to face it. But mostly his writing is beautiful and honest and its a compelling read.
I've thought a great deal about this part of the journey of recovery I'm on. Our health systems treat issues, they deal with bumps in the road but they don't help us to be well again. Nutrition is seen as a side issue, activity advice is paradoxical given how exhausted you can feel and  psychological recovery is left to chance and circumstance. 

Recently there was an update on alcohol intake advice  and the CMO in England suggesting that we all do as she does and think about our risk of breast cancer every time she has a glass of wine. Now information on alcohol and cancer risk is important and I wholly endorse the advice but I won't print my first thought when I read this. I wondered about the over 1000 women (and men) diagnosed with breast cancer each month in the UK and how they felt when she said that. I have written before about how guilty I have felt when I have been diagnosed with cancer; guilty for worrying my family, guilty for not being well and able to be the Mother, Wife, friend or colleague I wanted to be and guilty for what I did wrong to cause it.....if anything. So thanks for making that guilt a bigger burden.......unsubtle and pompous public health messages rightly make people angry and ( listen carefully) are counterproductive. Nanny state accusations have been thrown at her. The states important role in my view is to legislate where it can help and not be influenced by corporate bodies with their own agenda ( Westminster take note), thats not nannying, its good governance. My own call would be for a nurturing not a nanny state. I don't want a Mary Poppins spit spot approach to my health advice -a spoon full of sugar won't cut it. But I would like good access to healthy food, advice on how to  recover my well being, how to cut down the risk ( and that's all we can do) of recurrence and support to help me adjust psychologically and perhaps most importantly to have self compassion in recovery period. Now currently that's whats missing. For the lucky they may have access to rehabilitation programmes, Maggies centres and for the very fortunate, theWEL which covers these issues in depth but they are a drop in the ocean. I would love to see community based programmes to support recovery which awakens our own well-being,self compassion and believes in all of our potential for growth and healing.
So this weekend I will enjoy time with my family and enjoy a glass of wine with them too. Don't tell Sally Davies but I won't think about my breast cancer risk on that occasion at least. I will think about the healing power of connection, of laughter, of fun and of love. Make sure you get lots of doses of those on a regular basis and life will be good, whatever else it is.



Scanxiety?

  It’s not peculiar to cancer but waiting for results can be the worst time of all. Last week I had really quite bad scanxiety. Yes it’s so ...