Jo - abc diagnosis

In 2016 I held a “test pilot” for an idea that I had since I created my web site in 2013.  This was for an exercise retreat based where I lived in the beautiful Saddleworth area of Greater Manchester. I had been posting on social media about my exercise what I had been doing, running, cycling and walking in the area and had built interest due to the scenery but then people started being interested in the exercise.

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I was diagnosed with primary breast cancer in 2007, 5 months after giving birth to my second child and was on maternity leave.  I was about to get back to running as the previous year started to get rid of my first child “baby weight” and started running with my sister in law.  We had built up our distance running 8 miles and she had started talking about doing a ½ marathon and what events “we” could enter.

Cancer completely put a stop to this, BUT I was determined to get back to running after the long slog of surgery, chemo and radiotherapy.

2008 I started running again with a friend who I encouraged to come out with me.  She then moved home and I encouraged another friend to start running. It was great to get out and be able to do this again.  Slowly but surely, I motivated her and at points when we had enough time in our day we could run over 11 miles.  It worked for me and kept my weight in check and enjoyed the buzz after.

This was when I started again to think about my web site and I created www.abcdiagnosis.co.uk it was based on providing support and information on breast reconstruction, choices and my experience as a patient but exercise played a big part in what I wanted to promote.  I didn’t need to know the benefits, I knew this already but I wanted to bring this to other people who were in the same position as me, to a wider audience.  So the idea grew, I launched the web site and then started asking around about creating an exercise retreat for patients. I applied for a grant and in the midst of this, a year later in 2014, just as things were getting interesting and I was about to pitch for some funding, I was diagnosed with secondary breast cancer – the one that’s incurable.  

Silver linings, it was ”just” in my lymph nodes in my neck and two small spots in my sternum.  Nothing major to stop me exercising still?  After my appointment with my Oncologist I said to him “so I’ll be ok to do the Manchester to Blackpool bike ride won’t I?” he looked at me like I was a little crazy and said “yes of course”.  He had scheduled a small chemo break and this coincided with the date so myself and 23 other cyclists completed this for The Christie in 2014.  I fund raised for 4 years, raising over £19,000 for the Christie and a research fund specifically for resistance to chemotherapy for secondary breast cancer which I felt passionately about.  I could see this was important research.

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I ½ joking told my oncologist “id better see you at the start line” and he surprised me by coming along with his family and waving us all off.

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Some of the team in 2014

I was now on three weekly treatment for the rest of my life. 

I had a blip with neck resection surgery a year later, after getting progression in my lymph nodes but I continued my quest and pitched (wig on whilst on chemo) for 2 grants and was awarded both of these. The pilot retreat was held in Saddleworth 8 weeks after my neck surgery and was told “don’t run just yet” so I did some run/walk with the ladies and felt ok.  The cycling, yoga and Nordic walking was fantastic and they loved this ‘experience’ of taster sessions that I had created.  People may not take up or continue any of it but it was about motivation, how they could apply it to their own lives and the sense of achievement for these ladies.  It was the physical AND mental health well being that I wanted to promote for anyone attending.

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So it worked, and the results were amazing, one lady even deciding to go to weight watchers and in 2 years she lost 4.5 stone.  My retreat gave her the impetus and drive to understand she needed to change.  She is amazing and after initially being very sceptical about the whole exercise lark, she is now a huge advocate for exercise. She has understood the concept and why this is needed.   I collect feedback from each retreat and now Salford University are going to do additional focus groups for research evidence backing up the information to confirm what I knew all along…  It helps people massively with and through cancer.  Not just that but it can also decrease the risk of recurrence for primary patients and also helps patients who have secondary or metastatic disease reducing the side effects that continuous treatment has on the body and mind.  I know through my own exercise whilst on chemo that I had less effects with chemo brain and fatigue wasn’t as bad.  This was just two effects I identified.  There just seems to be less burden of SEs when I exercise.  

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2017 another set back to my plans after confirmation I had progressive mets in my sternum a year later after the neck surgery.  I saw a cardio thoracic surgeon who agreed to remove the disease in my sternum.  This was a 7 hour operation and stay in high dependency unit with major surgery and knew there would be lasting side effects.   I did the Manchester to Blackpool 62 mile bike ride for Christies on the Sunday and then Tuesday I was having this huge life changing surgery. Again, without an expert telling me, I knew that it was best to be as fit as possible that I could be before surgery. Prehabilitation is now the next project that the NHS are pushing for patients. This showed benefits for me as 5 days after my sternotomy, I was out of hospital and a day later I walked 2 miles.

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A year later I had to have corrective surgery on my sternum as part had separated and caused swallowing problems with the sternum pressing on my windpipe/throat.  I went Nordic walking the night prior to surgery 800 ft up a mountain and took my pre surgery drinks with me to take my mind off drinking the vile stuff!  I was the ideal gold star “prehab” patient that the Greater Manchester prehab talk about.  As an expert patient with this experience, its right I'm involved in the work they do to promote exercise before surgeries.

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The idea of the retreats from the start was to include anyone with secondary breast cancer which I was unable to do on the test pilot (apart from myself).  Historically, I know that patients have been dumbed down doing exercise, firstly to do with ongoing treatments with a “rest up” mentality by professionals as they don’t feel able to support people in this due to their lack of knowledge on the subject but yet they need to advise is if it is safe for their patient. In addition there has been an ingrained “don’t mix primary and secondary” that Ive heard of patients being told “no we cant have you attend [xxxxxx] meeting/support group as it may be upsetting for other people there.  This to me is discriminating against anyone other than those who will be “cured” yet there are up to 30% of early stage primary patients who will develop secondary breast cancer.  This is not acceptable and needs to change.

So what started as an idea has grown in 6 years from the idea, from small funding for a test pilot and then funding from the national lottery in 2018 to support 3 retreats.  The 2 day residential has been tweaked every time to give the best experience to the patients as I knew myself as a patient what worked best but with the feedback we have adapted where we can.

The retreats have been so beneficial to patients and there is no pressure to do all the activities we ask of people but you know what, people completely surprise themselves what they can do.  I’ve had numerous people say “I can’t run” and guess what, they have shocked themselves completing a 2 mile jog/walk.  Of course if medically they cannot do an exercise then there is always an alternative.  I have had completed beginners who did no exercise, to people who have completed triathlons and all have said it has been amazing and very beneficial.  No holding back for anyone we all go at our own pace but it’s been one of the most amazing experiences for them aswell as for me creating these little support groups.

May 2018 Retreat

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September Retreat

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October Retreat

 

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I’m so very proud of what I have achieved.  You really can do anything you want, even with an incurable illness like secondary BC, my drive and determination is still strong, sometimes actually more than before I was ill.  I know I have a limited time but currently I am No Evidence Active Disease (NEAD) so I’m enjoying helping others push themselves too.

Next steps for me are franchising the retreats.  I have had interest from the Isle of Wight, Ireland, Scotland as well as Belgium, America, Canada.  It may be something that can be international.

If nothing else, this is keeping me #BusyLivingWithMets (check out the hashtag on twitter) and that’s what I want to keep doing.

The sky is the limit, don’t let anyone say “you can’t” I know that we all can, we just have to believe in ourselves and our bodies, we just may be slower and not like we use to be but you can adapt.  I will not let incurable cancer stop me do anything whilst I am still able to.

Ill leave you with this quote that my Oncologist sent to me when I was setting the retreat up

“Number of patients harmed by exercise = 0
Number of patients having worse/poor outcomes due to
lack of exercise = countless”

Here is my web site page for further information and dates of the next #abcdretreat 

http://www.abcdiagnosis.co.uk/lifestyle/abcd-retreat/

 

“motivation & exercise through recovery and beyond”

jp abc