Our latest guest blog is from Gemma Ellis, founder of Stage 4 Deserves More, a non-profit organisation that provides support packs to women and men living with Stage 4 breast cancer. She writes about some key items, which have helped her through her cancer diagnosis.
I was diagnosed in February 2017 with inflammatory breast cancer. I felt like nurses were falling over themselves to give me primary breast cancer folders, leaflets, positive stories, etc. I immediately underwent six cycles of chemotherapy, followed by surgery and radiotherapy. By the end of 2017 I'd completed active treatment and just remained on daily tablets and 3-weekly injections, which I initially believed would prevent cancer from knocking on my door again.
However, in March 2018 after a routine CT scan and just before what should have been my last injection I was told something had been found on my spine. I was given an MRI, which was inconclusive. This left me with no option other than a bone biopsy - ouch! - which confirmed that I had secondary breast cancer that had spread to my bones.
My primary diagnosis was obviously nerve-wracking but I had a lot of support and positivity surrounding me from a whole team of medical staff. My secondary diagnosis was quite a different story. My nurse was fantastically supportive but that’s where the support ended. Once I left that room I was on my own.
Family and friends rallied round but no one knew what to say. When someone hasn't had cancer, they think you want to hear 'you’ve beat it once you will beat it again' but this wasn't at all a reflection of how I felt. So I turned to online support groups and friends I'd met through my initial diagnosis who 'got it' - they knew what to say and when to say it.
I gave up work, panicking and feeling I couldn’t cope with the psychological impact of my diagnosis. I was a discharge co-ordinator for the NHS at the time and it was hard to see and deal with the sad cases we had - especially those that involved cancer. Retiring from ill-health at age 35 wasn’t in my life plan, but none of this was!
Trying to take the positives from the negatives, I focused on things that made me happy and appreciating the small things. I started doing the school run every day. I was there for every harvest festival, nativity and cake sale. Given my diagnosis being at these events had become more important now than ever.
A few months ago, I was thinking I needed to replace my job with something equally as rewarding. I knew getting a little job wasn’t really feasible as my diagnosis means that I am incredibly tired a lot of the time. I have a lot of aches and pains and I never know which Gemma is going to emerge from bed in the morning - Blubbering Betty or Positive Pam! I wanted to work from home and do something that gave me a purpose again.
So I started to put together packs of items that had helped me through my diagnosis and still help me today. I'm in ongoing treatment but am stable and able to live a pretty good life - although the fatigue does get me down. So, I decided to set up my own non-profit organisation sending the packs to other people in my position. I thought about how lonely and unsupported I felt after my secondary diagnosis and knew this was something I wanted to personally change.
These things played a huge part in helping me to cope with my diagnosis, and I hope they help you too!
- Finding helpful and practical information: There is so much information online that it's hard to take in. I have popped a leaflet into the pack, which suggests some clear places to start with charities, online support groups, wig shops, head wear, post-surgery underwear and more!
- Cancer-friendly travel insurance companies: It is so hard to find companies that support people going through cancer. I have included suggestions in the pack for you to use.
- A note book and pen: I always forgot what to ask my oncologist when I got in the room with them, yet had lots of questions at home. So I wrote them down and jotted the answers down in my appointments to combat forgetfulness after the appointment.
- Tissues: Either for a good cry or to tend to the runny nose caused by certain treatments.
- Four herbal teabags: One to help sleep patterns, One containing biotin to help with nails and hair, One to aid the immune system and the other to help with fatigue.
- A face pack: I enjoy nothing more than a long soak to help my aching joints and pampering myself too. Good for mind and body!
- A wish bracelet: Somebody gave me one of these when I was first diagnosed and for some reason it had a poignant meaning. I wanted to share that feeling with others.
- Sugar free mints: I find treatment can often make me nauseous or leave a bad taste in my mouth, so mints really help to disguise that feeling.
- Antibacterial hand gel: I use this when out in public to minimise risk of infection.
- The book 'Mummy’s Lump': This book helped me to talk to my girls, Ruby and Scarlett, about my cancer diagnosis. Something that is very hard to explain. I add this to the pack when requested on the website form at: stage4deservesmore.com or messaging us on Facebook.
I’m so pleased about how Stage 4 Deserves More is going. Word is getting out and I’m really enjoying fundraising for, and making the packs. It’s given meaning back to my life.
We’ve had some lovely letters and messages, which have motivated Ruby, Scarlett and I to carry on. It is sad that the demand is so high but I'm just glad that I'm able to help support people at a time where I felt quite abandoned.