I began my cancer journey 5 years ago this September
Discover how it has made me almost fearless.
On the 16th September 2019 I took this picture on my dog walk, before going to the doctors for the first time, I’ve no idea why I took it, but now I think it was a sign of what was to come.
You would think that going through a cancer diagnosis would have the opposite effect to creating an attitude of fearlessness.
You would think that it would scare people to go inwards, set up their personal fortresses, create a nest of protection and become acutely aware of all the dangers out there in the world.
But strangely for me it has had the opposite effect and has taught me an awful lot over the years.
The phrase; You grow through what you go through, could not be more true in my opinion.
I’ll start from the beginning, which happened almost 5 years ago, on a typical Autumnal day, Monday September 16th, 2019. The kids had returned to school after a long Summer, and that morning for reasons still unbeknown to me, I woke up with a start, and immediately remembered a conversation I’d had with a physio back in May whilst having treatment on my shoulder.
I’d mentioned casually about a lump I’d found just above my collarbone which was about the size of a small marble at the time and asked if that was anything related to the shoulder injury or anything muscular.
He said no and that I should keep an eye on it. But stupidly I didn’t, not by choice but what followed was a chaotic few months; the boiler broke and didn’t get fixed for 3 long weeks, my husband was randomly suddenly made redundant, I was busy with the kids activities and then the Summer holidays, and also busy building my own small business, and it genuinely completely slipped my mind.
That morning when I woke up suddenly, I went to trace the lump, and it was double the size. I couldn’t believe I hadn’t noticed it when putting on sun cream during a recent holiday in Majorca! The lump was painless but solid and so off I went to the doctors that day, who immediately whilst trying to mask her concern, took measurements and referred me to the ENT clinic at Barnsley Hospital.
What followed, in a nutshell, was a myriad of tests over 8 weeks, leading to an eventual diagnosis of Hodgkins Lymphoma, a type of blood cancer and I had in fact got 5 tumours, the largest on my collarbone, one under my arm pit and 3 in my chest. For more info on the this type of cancer, see my links at the end of this.
By the time I started my chemo treatment on the 15th of November, the collarbone lump had doubled again in size, and I was starting to feel it when I swallowed. But I was ‘lucky’ the type of chemo treatment I had (ABVD) is incredibly effective and I noticed it shrinking after just one session.
However it wasn’t all plain sailing, the treatment really attacks your immune system too, and so on the night before my birthday I was rushed into hospital at 2am with a raging fever and feeling extremely ill with neutropenic sepsis.
This is quite a common experience for people on treatment but scary none-the-less! 5 days later after being pumped full of antibiotics I was released home, but looking like death warmed up, as my mum would say!
The drugs also impact your hormones and so I was thrown into a medically induced menopause instantly after the first treatment. This was not fun, I was waking up every night boiling hot and not getting much sleep which didn’t help matters.
By the time I finished chemo I’d lost a stone, had lost all of my hair, including eyebrows and eyelashes which I didn’t realise would happen, and felt very weak, but it was done and was such a relief that it was over.
One of my fears before all this was of ever having to go through chemo, strangely it wasn’t cancer that scared me, it was the effects of the treatment that did and I’m not going to lie, it was bloody tough going, one of the hardest things I’ve ever had to cope with.
Trying to rock my final chemo session and bringing in buns for the nurses!
Once I’d finished though, my consultant was concerned with one little bit still showing up on the scan and didn’t want to risk it, so I was blasted with radiotherapy for 3 weeks and that did the trick! In late February 2021 I finally got the call to say I was now in remission, and I promptly burst into tears with sheer relief that it was all over after the longest 18 months of my life!
I know I’ve been one of the lucky ones though, my recovery since has been good, with only a few after effects; neuropathy in my fingers and toes that bleach white and go numb in the cold, some skin discolouration on my arms, and the most annoying breathlessness when walking uphill due to scarring on my lungs from one of the chemo drugs I had - another common side effect from this particular drug.
One of the scariest periods throughout this time though was having treatment during the height of the pandemic, from March – December in 2020. We were classed as the ‘Extremely vulnerable’ group but they don’t stop treatment for blood cancers as they progress so rapidly without treatment. I hated that phrase, but it meant we had to be extra cautious everywhere, and at home with loved ones.
The most difficult part of that time wasn’t that I had my treatment alone, it was seeing the nurses so under pressure and upset as they learned that some of the older patients had passed away from Covid. It was such a scary time for them as they tried to protect us.
So that was the journey, a tough one for sure but one that gave me many new lessons and experiences in life for which I am now grateful for.
Life can work in mysterious ways sometimes.
Above is an example of the many blog posts I wrote to keep me going through treatment.
If I hadn’t been through cancer, I wouldn’t have:
Clung on as tightly or been so motivated in writing my Blog in the few days I felt well in between treatments, my blog was my lifeline throughout those 6 months.
Shared my Blog on the Psychologies magazine Facebook Group, to then be noticed by none other than the editor in chief, Suzy Walker, who then asked me to do a live interview from her houseboat and then commissioned me to do a series of 10 Instagram lives on gaining creative confidence to keep the readers going through lock down.
Suzy has been my friend and inspirational mentor in many ways ever since, and I love being a part of her Substack Heart Leap group.
Taken part in the 6-week coaching programme with Life After Cancer to help me process what I’d been through.
Gotten to know Steph more who set up LAC, this life-changing organisation which then led to her raising funds allowing me to train as a coach, something I’d always wanted to do.
Then become an ICF trained coach with Noorworks and met the amazing Mahnaz who set it up.
Become a Community Coach for Life After Cancer, helping hundreds of other patients who had been through treatment too and come out of the other side.
Met Kirsty on the LAC course who then became my coaching guinea pig, I recognised so much sparkle in Kirsty and I supported her to leave a job she no longer loved! I’ll never forget the day she sent me a picture of a glass of prosecco with a message to say I’ve done it, I’ve left! And I thought Oh blimey maybe I can do this, be a coach and make a difference? She now also works for Life After Cancer!
Met the amazing Allyson Kent through LAC whose journey you may have been reading about here. We share so many values and both have that Can Do attitude, we can talk for hours over ideas, and I feel truly blessed to know her.
Met Karen Hubard via a HL Support Facebook group, we became treatment buddies as we went through it at the same time, and it was good to compare notes! She went on to become one of my first coaching clients, and now has her own successful Crochet Teaching business – Hooked Stitched and Glued!
Had the opportunities to go on and work more in the health and wellbeing sector, I’m currently working with the Health Innovation Partnership and Thrive Kirklees as a business mentor for start-ups and wellbeing business owners.
So those have been the ripple effects of opportunities that have come my way, because I was open to them and put myself out there since my diagnosis, and meeting some incredible people along the way, but what about the personal lessons?
These days I try to be a bit more adventurous, despite how knackering cycling now is!
Well, of course there are many, here are a few.
I say YES to interesting opportunities, wholeheartedly trusting my gut instinct and if it makes me a little nervous / excited, that’s a good thing, because I’m not just staying comfortable.
My question to myself if I feel a little hesitant is;
‘Well what is the worst that can happen?’
Because when you’ve faced something like this, that is quite terrifying at the time, then other things now feel like a breeze in comparison.
I can do something as tough as chemo and radiotherapy - the mental battle was probably harder than the physical one, I am not good at feeling trapped and unable to do things, I’m usually always ‘on the go’ and so had to have a serious word with myself at the beginning or I would have driven myself mad. I had to rest when I needed to, and then occupy myself with gentle creativity, reading and walks with the dog when I felt able to, boy did I relish that fresh air!
I had to find some patience, which I’ve never been good at. The worst part of all of this was the beginning, the tests, the waiting, the wondering, the googling (yes I know you’re not meant to but I’ve always had a keen interest in all things medical, I knew what I had before they did, I felt better knowing what to expect rather than the unknown!), the pace of communication in the NHS! All of it was a massive mental test. Patience is a virtue, I’m not sure if I’ll ever have it!
Morphing from the ‘Go To’ person with any problems, to the -‘I probably, very reluctantly need your support,’ was INCREDIBLY difficult. In my friends and family groups I’m the problem solver, the fixer, the helper, the get it sorted person. Having to change to the opposite end of the support line was a shock to the system, and I think my friends found it hard too!
That I got through, but at a cost. In my usual head down and get on with it style, I did get through it, but at the other side, and 6 months down the line my body reacted with a few unexpected slight panic attacks which I had never experienced before.
As they say, the body keeps the score, and I hadn’t fully processed what I’d been through at all, I’d gone headlong back into ‘doing’ and the insane feeling of making up for lost time had me working too hard, and so my body let me know about it! That is what made me go on the LAC coaching programme, and so quite fortuitous in the end, and I’m so glad I did.
My husband can cook, look after the house and the kids and dog! Well he had no choice in the matter really but it proved he could do it! He carried on with banter and his usual cracking on with things, which kept things as ‘normal’ as they could possibly be.
And finally I felt incredibly loved and supported, when I shared what was happening at the start of my chemo on a blog, it became my most ever read post, and I received so many messages of support from strangers and friends I hadn’t heard from in ages. It’s really surprising how much people think of you when push come to shove in tricky times and I was so grateful for all those messages, they really boosted my confidence to get through it. Everyone was cheering me on and believed in my ability to get through it with my positive mindset, and so it had a cumulative effect, I was almost doing it for the people willing me on, as well as myself!
Walks in the countryside when I felt well enough, played a big part in my recovery.
So back to feeling almost fearless, I am around 85% fearless I’d say, I still don’t love snakes, I worry about the kids futures as any mum would, and there are occasional days, usually around check-up appointments which I still have every 4 months, (and some longer term ones too, due to the radiotherapy and having cancer at a relatively young age) where I wonder how I would ever cope if I had to go through it all again.
The smell of hospitals and chemicals now invokes a visceral response which proves my body soaked up all that apprehension at the time, without me realising.
The thing with first time around is you don’t have a clue what to expect and just trust the doctors, I know now what those side effects are like, and so I know I would be a lot more scared if I had to do it all again.
But people do, many amazing people, and I’d just have to get on with it, because one thing is for sure, I have so much to do in this one precious life.
My only wish is that people who didn’t have to go through something so horrible would realise that too, and make the most of the only experience of life they will ever have.
It’s the one huge, life-affirming lesson we have as cancer patients, just a shit way to have to fully learn it!
It pains me to see life, and time wasted not living it to the full, and I worry that one day I’ll get annoyed and say that too loudly and get into trouble!
So 5 years on from this whirlwind adventure (reframing it!), I intend to keep living life to the full, with little thought to what cancer took from me, and more about what it has given – the insight to know better, that time is finite, and that there are so many positives from this experience, especially the connections I’ve made with some truly inspiring people who have now become a big part of my life.
On September the 16th this year, exactly 5 years from when I made that first call to the doctors, I will be in a team meeting with Life After Cancer, coming up with ideas and planning with the others what the future of LAC’s work will look like and how we can support even more people who have been through cancer to create the life that they want.
Now that is something worth celebrating, I’m so proud to be a part of that incredible team, which would not have happened if I hadn’t experienced my own cancer journey.
Life is weird right?
Now go bloody live how you really want to, and like your life depends on it, because life really is much shorter, and more precious than you think.
With love and light,
Juliet x
Ps - September is World Blood Cancer month, and World Lymphoma Day is on the 15th September - so close to my anniversary! For any information on signs and symptoms of the UK’s most common blood cancer, and the 5th most common cancer overall, please visit: Lymphoma Action and Blood Cancer UK - Know the signs so you can get treatment fast.
For posts I’ve done in the past linked to my cancer journey please see below:
Heading into un-chartered waters…
5 days to the end of Chemo….and other interesting numbers!
I feel so moved reading your story and your response to cancer is just incredible. You are an inspiration to us all. Keep on turning up and beaming your light.
You’re such a star. 🌟 thank you for sharing your story Juliet! ✨