How to build your breast cancer support squad - PART TWO
Sharing everything I’ve learnt so far……
Following my breast cancer diagnosis it was a revelation to discover just how much support was available to help me navigate the vast array of emotions, worries and medical appointments that ebbed and flowed and continue to do so. Some support is easy to find. Some you need to seek out. I am sharing everything I’ve learnt that has formed part of my ‘Support Squad’ in the hope that it helps anyone reading this going through breast cancer or someone you know who is.
I shared PART ONE of my Support Squad in a previous post so it’s best to start there.
MY SUPPORT SQUAD PART 2….
THE AMAZING CHARITY, ‘FUTURE DREAMS’
It was my breast care nurse, Katherine, who first signposted me to what has become my go-to haven, Future Dreams. This truly wonderful charity offers a whole range of support, (practical, psychological and emotional), for people diagnosed with breast cancer and provides a huge range of workshops and 1:1 sessions which you can access online or in person. I have visited the beautiful sanctuary of Future Dreams House, (a two minute walk away from London’s Kings Cross Station), many times and signed up for all kinds of courses. Here are just a few of the many I’ve found helpful…
*A Fear of Recurrence workshop
*An online talk on nutrition ‘Nutrition and Breast Cancer: Understanding The Links
*A session on EFT (Emotional Freedom Technique) for relaxation and sleep
*An online evening meditation session
*A workshop on managing your finances and how to make a will.
Future Dreams is my ever-present safety-net that has supported me in so many different ways. The first thing I do now if I’m having a ‘cancer-wobble’ is see what sessions I can sign up to. You can have a look here to see the selection of things they offer….(https://futuredreams.org.uk/)
MACMILLAN CANCER SUPPORT
A few weeks after my diagnosis I contacted Macmillan after seeing their details in one of the booklets I was given by my breast care team. As well as their extensive range of resources online and in printed booklets, they have a helpline, online forums and face to face support too. I was able to benefit from eight 45-minute 1:1 sessions on Zoom with a trained Macmillan counsellor. Find out how Macmillan can become part of your Support Squad here:
https://www.macmillan.org.uk/cancer-information-and-support
FITNESS INSTRUCTORS
Exercise classes have taken on a whole new importance since breast cancer came along. I used to like a weekly swim at my local community gym, a dabble with pilates, a shake about in a Zumba class when the mood took me but I didn’t exactly prioritise exercise. Since my treatment and mastectomy, keeping fit, feeling healthy and getting a good release of endorphins has become more crucial than ever to me. I do two or three regular exercise classes a week but if I’m feeling particularly anxious, overwhelmed or a bit flat or listless I book myself into one that I know will give me a boost or a mind-calming hour. If the gym isn’t a possibility I take myself off for a walk round one of our local parks. The fitness instructors at my local community gym are a very important part of my Support Squad (even though they don’t know it!).
LOBULAR BREAST CANCER CHARITY
There are many different types of breast cancer. Lobular, which I was diagnosed with, is the second most common form after ductal and accounts for around 15 per cent of breast cancer cases in the UK. Unlike ductal cancer, lobular grows in lines meaning it often doesn’t present as a lump and is much harder to detect on mammograms which I found brings its own set of anxieties.
I heard about the charity Lobular Breast Cancer UK via Future Dreams and signed up for a session in which we were given advice on how to get long term monitoring, how to advocate for ourselves during medical appointments and lots of helpful facts and research. The session also provided the perfect opportunity to connect with other women with a lobular diagnosis and share our experiences. This charity is another invaluable part of my Support Squad.
https://lobularbreastcancer.org.uk/support/
‘SHOW AND TELLS’ WITH THE CHARITY RESTORE
The fabulous charity Restore was set up to help women contemplating breast reconstruction after surgery. I went to one of their ‘Show and Tell’ events in which volunteers who have all had mastectomies model their bodies, show their scars, their breast reconstructions and share their first-hand experiences. The session was absolutely invaluable. Seeing those women and hearing their stories helped me so much that a few months after my mastectomy and DIEP flap reconstruction I became a volunteer model myself. Restore has become an absolutely crucial and ongoing part of my Support Squad. I have written about it in previous posts including how I went from a scared patient to a volunteer model here:
I’ve also sung its praises in my piece about all the positives that have happened since my mastectomy here:
https://tesslamacraft.substack.com/p/a-year-since-my-mastectomy-13-wins
THE MENOPAUSE AND CANCER PODCAST
This is a great podcast created and hosted by the formidable Dani Biddington who set it up after going into early menopause aged 39 as a result of her breast cancer treatment. With episodes such as….
*Alternatives to HRT
*Rebuilding confidence and self-esteem
*What to do when doctors’ opinions divide
…it’s a fantastic resource for any woman whose treatment has put them into early menopause and women, (like me), who are in perimenopause / or menopause but have had to stop taking HRT following their diagnosis.
Highly recommended for anyone’s Support Squad.
https://menopauseandcancer.org/podcast/
BOOKS AND AUTHORS
The books by these three authors have been key parts of my Support Squad and their writing has helped me in different ways.
Reconstruction by journalist and Well, Well, Well substacker Rosamund Dean is packed with helpful tips, practical advice and experience. It’s my go-to manual and so I was very excited to meet Rosamund at a Future Dreams event and chat to her.
Dear Cancer by the journalist and broadcaster Victoria Derbyshire (who I’ve been a fan of since her Radio 5 days) is written in diary form and follows her experiences from her diagnosis of lobular breast cancer through treatment and beyond. I found it inspiring, engaging, candid, reassuring and full of helpful insights.
The Complete Guide to Breast Cancer by Dr Liz O’Riordan and Professor Trisha Greenhalgh is written by two doctors who are both breast cancer survivors, this book is very accessible and a useful resource I’ve dipped into many times, especially when I want a more medical slant. Dr O’Riordan has recently written a new book, The Cancer Roadmap.
I also found this article really helpful when I was first diagnosed and sent it to lots of my friends and family so they could get a better understanding of breast cancer.
So there we go. I hope anyone going through breast cancer will find some of this helpful. As you can see there really is a whole lot of support that you can tap into.
I haven’t even touched on Instagram accounts or the array of online forums and facebook groups mainly because I’m not a big social media user. Instagram - @oriordanliz and @thetittygritty are just two of the many you might find helpful.
Which people, places or organisations have you made part of your Breast Cancer Support Squad? Who or what has got you through the toughest times? I’d love to hear from you….
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Thank you for reading, Tess x
Ahh this is lovely to read, and thanks so much for the mention! ❤️