Positive, helping others

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Hello everyone

I wonder if I could ask for your help please?

I’m currently planning a project to produce a resource for breast cancer clinics. The resource will be a booklet of 50 or more positive stories of women’s experiences with breast cancer.

Why am I doing this? When I was diagnosed with primary and secondary breast cancer, I was given a great deal of medical information. However, there was thing I was not given at this time, which was very much needed -HOPE. I needed to know that I at least stood some chance of getting through this awful experience, to survive and to get back to being me. At the time of my diagnosis, nothing I was given gave me any reason to believe this was possible.

It was only much later, when I felt strong enough to put “breast cancer” into Google and find this forum, ignore the scary stuff, and find positive stories of women who had overcome seemingly impossible odds, to regain health and a chance to achieve remission and thrive with their cancer.

I would like every single woman diagnosed with breast cancer to be given a booklet of verified, positive stories from the UK, at the time when they are most vulnerable, and feel that they have a task ahead of them similar to climbing Everest without a rope! It’s also a time when women can feel very alone, and I also hope that the booklet can contain details of forums such as this one.

I aim to start with my own hospital in London, but hopefully I would like the booklet to be distributed to every breast clinic throughout the country. I am looking for permission to reproduce stories of women with every type and stage of breast cancer, from DCIS, to stage IV. I only wish to use first names, or even a pseudonym, so the stories will be anonymous. The important thing is the detail and accuracy of the experience.

Just imagine on the day of your diagnosis or initial appointments, amid the shock of hearing what lies ahead, you had been given a booklet of positive stories to share with family and friends. It might just have given you that glimmer of hope, and the ability to think ‘I can do this!’

If you’d like to write your story for the booklet, please reply to this thread.

Many thanks for reading

Mini xx

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I think it is a brilliant idea and good luck to you.  I wish it had been there for me when I was diagnosed - there were plenty of negative scare stories out there but very few hopeful ones.

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Hi Mini,

 

What a great idea! When I was diagnosed (Stage 3 ER+ IDC, May 2013, aged 40, with 3 young children) none of my medical team gave me any hope. When I tried to get them to say anything positive they just shrugged or said “take one day at a time.” This made me more scared than anything else, as I felt that if they didn’t see any hope then there was none. I searched hard for hope and inspiration, finding it on this site and in books. However, it took me months to fully feel in my heart that there was any hope, and during this time I was incredibly anxious and I imagine that as a result it was hard for my body to heal. Since finding hope I have worked hard, through diet, exercise and meditation, to regain my health and at the moment I feel really well. If I had been given a book at the start like you are suggesting it would have helped me enormously and saved a lot of time!

 

I don’t think I’m far enough on from dx to give hope to others yet - when I was diagnosed I wanted to hear from people a lot further on than me :smileywink:. Have you thought of pm-ing any of the women who have posted their stories in this section of the forum (5 years on etc)? They might be willing to help.

 

On a personal level, if you find reading inspirational stories helpful I would recommend a book called “Radical Remissions: Surviving Cancer Against All Odds” by Dr Kelly Turner. I have recommended it elsewhere on this section of the forum - it really does give hope for healing with cancer at any stage.

 

Wishing you all the very best in your mission to spread hope!

 

Jx

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I would very much like to give my story to help other gain hope x

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Hi Cassie. Many thanks for your help. Would you like to send me a direct message or are you happy to tell your story here? Mini xx

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Hi MiniBee,

I was only diagnosed last November with grade 2 stage 2 invasive lobular breast cancer, so not sure that my story would be far enough down the line either, but here goes.

I’d had a painful lump in my breast for several years and had ultrasound and yearly mammograms, which had all come back negative. I basically ignored the pain for a number of years, and didn’t touch the area because of the pain till September 2013 when I turned over in bed and my hand brushed against my breast and there was a massive hard lump! I went to my GP and was referred to the breast clinic and received the devastating news that I had cancer. Due to the fact that the cancer was lobular, it hadn’t showed up in any of my mammograms. I underwent an MRI scan because lobular cancer can be in both breasts at the same time, the result of which was a diagnosis of a single 1.5cm lump in my left breast. Was told that I would only require a lumpectomy (no node involvement in my SNB) followed by a course of radiotherapy. I felt so lucky to have given chemo a body swerve! However, when the lump was removed, it was 3.7cm not 1.5, and they hadn’t got clear margins, meaning it could be even bigger! I had to wait another 6 weeks to undergo my second op, which thankfully came back clear, but then they dropped the bombshell. My oncologist thought I would benefit from a course of chemotherapy after all. He left the decision to me, and after thinking it over, I decided to take his advice. I thought that chemo would be an absolute nightmare and cried for days about loosing my hair, but I actually tolerated it quite well. I carried on exercising throughout my treatment and even managed to do the 26.2 mile moonwalk between sessions 4 & 5 and only had to take 2 days off work throughout (although I do only work part-time). Yes I felt a bit nauseous and was really tired, but on the whole, it wasn’t as bad as I had expected. I then underwent 19 sessions of radiotherapy to top off my treatment. I was amazed at how quickly by body recovered and within 2 and a half months of finishing my chemo, my hair was long enough that I could dispense with my wig and my eyebrows and lashes were back to normal. Having a cancer diagnosis is definitely the scariest experience that I have ever gone through, but there is light at the end of the tunnel!

Sorry for rambling on, and I apologise if this is not the kind of story you want for your booklet. I do think it’s a fantastic idea though, and I wish you all the success in the world with it. I know that it would have lifted my spirits no end to read some positive stories at the beginning of my journey.

Good luck! Ann x x x

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