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Happy New Year.

30/12/2015

.As we come to the end of another year, we can reflect on what has been achieved in regard to raising yet more awareness of womb cancer.

Womb Cancer Alliance has been busy setting the priorities for future womb cancer research with the help of womb cancer patients and doctors and other medical staff who treat womb cancer patients. They held a widespread consultation early in 2015 on where people wanted to see research and ended the year by picking the top 10 that will hopefully be where the new research into womb cancer happens. This is exciting news and hopefully means that womb cancer will get more media attention and money spent on it.

During the September awareness campaign there were a few ladies who had articles printed in their local papers around the UK which helped to spread the word about womb cancer. We also had our Big Day out in Birmingham again and managed to get lots of social media exposure.

It’s frustrating that things are not moving faster but I guess I’m just impatient and want as many women as possible to “Be Womb Aware” and not end up hearing those dreadful words “I’m sorry but you have cancer”.

11th April 2016 marks our 5th Birthday and we still have so much to achieve but as this year comes to an end we can all look back and feel proud of what has been achieved.

There are many people who are helping to raise awareness and spread the word about womb cancer and many others who support what we are doing, and I thank each and every one of them.

Wishing you all a Happy New Year and all the best for 2016.
Stay Peachy!!

xx Kaz xx

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I’m sorry but you have cancer!

23/12/2015

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If you have heard those words you will know what if feels like to have your whole world turned upside down in an instant.
I heard them on 23rd Dec 2009 via a telephone call from my Gynaecologist. I was alone in the flat at the time and he had rung to tell me the results of an MRI scan that I’d had a few weeks previously to determine the number and size of fibroids that had been diagnosed a few months back.
I don’t remember ending the call; I went into shock. I laid on the bed and cried myself to sleep.
It was 6 days before I could get an appointment to see my GP and I was told that I was booked in for a hysterectomy at the end of January.
The following 6 months were hard. Surgery came and went. My Gynaecologist and Surgeon both said they were 99.9% sure they could remove all the cancer and I wouldn’t need further treatment – but unfortunately pathology results said otherwise and I ended up having chemotherapy and then external radiotherapy. My last day of treatment was on 12th July 2010 – 5 days before my 47th Birthday.
Getting a cancer diagnosis changes your life for ever. Some people are able to turn the negative into a positive and embrace the change, taking their life after cancer into a totally new direction. Doing the things they had always wanted to do but had always put off – like travelling the world or learning to skydive or climb mountains.
For some of us however, the changes remain negative. Cancer has ruined my life. It crept in and destroyed everything. Treatment did not make things better and let me get on with my life. It has left me with long term side effects that now control my life. I can no longer do the things I used to enjoy – like taking long walks along the beach or going camping. Even getting up and going out to do mundane things like the shopping is a struggle.
Long term health problems, often caused as a result of the treatment, mean that quality of life is low for many patients after their treatment has ended and try as we might to return to some sort of normality it is often very hard.
Help and support for cancer patients with long term health problems is very patchy across the UK and for those living in isolated or rural communities it can be non-existent. There are some very good local support groups and organisations out there who do help and support patients, but very often patients don’t know about these services because GP’s and the NHS don’t pass on the information. There needs to be co-ordinated nationwide NHS services to help these patients so they are not left alone to struggle with day to day living.
Getting a cancer diagnosis is bad enough but having to live the rest of your life with the long term side effects of treatment is a daily struggle and quality of life can be very poor.
So, 6 years on from the day of that phone-call my life has changed dramatically. Cancer has left me angry. Angry at my body for turning against me. Angry at the people who treated me for not telling me about all the possible side effects and consequences of my treatment. Angry at being left with no support. Angry that my husband, who has his own health issues to deal with, has had to look after me for the past 6 years and as a consequence his own health is even worse. Angry that people assume that once you have finished treatment you are ok and “back to normal”. Angry that cancer took my Mom from me suddenly 2 years ago and there was nothing I could do.
Most of all, I am angry that I am angry. I can’t let the anger go. It’s there every day when I wake up and struggle to get out of bed; a constant reminder that my life has changed forever.
No one prepares you for life after cancer – no one tells you that things will never be the same again.

xx Kaz xx

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Womb Cancer Alliance Final Priority Setting Workshop

19/12/2015

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At the beginning of December, Womb Cancer Alliance held their final priority setting workshop to choose their 'top 10' research priorities for womb cancer. Unfortunately WCSUK was unable to be there but a few of our ladies did attend. This is taken from a blog about the day written by Clare Callaghan.

" On Thursday (3rd Dec), me and mum went off to Manchester to join a lovely bunch of people who have experience of womb cancer in various capacities, some of us as patients, carers, gynae oncologists/surgeons, researchers in womb cancer, GP’s, CNS’s etc; a cross selection of various contacts with womb cancer.
When we arrived I was so excited to meet some of my fellow Peachies whom I have spoken to numerous times but loved to see their beautiful faces; Noreen, Angela, and Marie. It was also lovely to see my fellow peach Carol (who I found out designed the womb cancer alliance logo) and Katherine.
After our lovely introductions we started our session. We were introduced by Richard Morley who explained how the James Lind Alliance worked and how the day would pan out and Dr Emma Crosbie explained about all the work the WCA had done so far to lead us up to this point. I was pleased that the statistics showed that it was an even split between patients and healthcare professionals input to the questionnaires.
We were then asked to go in to smaller groups in which we were asked to share more of our story and which angle we were coming at. We then went through our homework list to say our top 3 and bottom 3. We also had to say the reasons behind these. We also found that we all found the task quite challenging as all of the questions were important so how could we rattle it down? Another interesting observation was what we as patients found important that the medics did not and vice versa, mainly because medics knew information that we as patients didn’t understand and from the feedback the medics didn’t understand the feelings that we may necessarily have felt as a patient.
We spent the remainder of the morning working together trying to create a list in which we as a collective where happy with, trying to represent various themes form the questions and trying to incorporate all of our feelings.

After lunch, it became a bit more challenging. We were mixed up into different groups and during the lunch hour the James Lind facilitators had produced a list from all of the 3 groups of the order we came up with. We then in our new groups had to look at this and say if we agreed with the new order and again state our case for why and what we had to take off. I did find this particularly challenging as within this group there was only two patients among medics/researchers and I did feel certain researchers were trying to push their current research to the top and although there was two patients we both had very different views. Proves you can’t bracket all womb cancer patients as one, and I also noticed in this session that you can’t bracket all Medicals as the same as there was strong debate and feelings among this group too. I found that I had to really think and articulate my arguments into this session, but not much changed as most of us generally agreed on the top items.
After a coffee break, the afternoon got more challenging as we then had to agree as a full group combined to make our full agreement of the top ten list. I have to say this was generally good as we mostly agreed but again, it was here that strong minds often clashed and the democracy of a vote had to take place. I didn’t realise how passionate I was about womb cancer and in particular about young women being diagnosed until one research question was nearly taken out the top ten and suddenly a passion stirred in me and I had to express the views of why I felt this had to stay in and was amazed about how many actually supported it; so it goes to show that you should never be afraid to express your views but we must always respect those around us.
So after a long day, we eventually produced the top ten list; this does not mean that the others are discarded, they will be produced as another list for others to research. This was just what we felt collectively really needed researching and looking into and to be fair at the end, as a collective, we looked at the top themes that needed to be in top ten and which questions we felt best represented this.
If you wish to find out more about Womb Cancer Alliance and to see the list once its published please check www.cancer.manchester.ac.uk/wombcanceralliance

This is an abridged version of Clare's original post; if you would like to read the full post then go here
We thank Clare for allowing us to share her blog post about this important day for womb cancer research.

xx Kaz xx

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I’m sorry but you have cancer!

Womb Cancer Alliance Final Priority Setting Workshop

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