I just wanted to update everyone that’s been following along on my Hodgkins Lymphoma journey, because the interim scan results are in and it’s great news – all the tumours (I had 5) have been well and truly zapped by the chemo and have gone!
The PET scan shows I have no evidence of cancer there, although it can’t fully pick up some cells that may be lying dormant…. which is why you have to continue with the full treatment to the end. What it does mean is that we can drop one of the medicines, Bleomycin, which can have some nasty effects on your lungs, so the sooner it goes the better and the rumour is that this knocks off some of the nasty side effects too…here’s hoping!
So, since I told you all about my diagnosis and the start of the journey, pre-chemo beginning, I haven’t filled you in on how it’s gone so far and I thought it might be useful for others out there to hear what it’s really like, especially those who may be starting their own chemo journey soon.
Firstly, let’s start with the positives; the people, all the medical and volunteer staff involved in my care have been amazing, and there are a lot of people!
Here are the team; Haematology specialist nurse – talks you through all the treatment, organises key scans and referrals for additional holistic treatment, financial help, wig appointments and is there to answer any questions, no matter how bizarre, all the time, the picc line nurses who insert a fine tube that goes in through your arm and up around into your chest and stays in until full treatment is finished and make sure you treatment gets in without any pain and keep the line infection free; the chemo nurse team – these are the guys that keep you calm, comfortable and entertained on treatment day, administer the treatment and look out for any reactions and do all the blood tests prior to treatment too; the volunteers on the unit keep you topped up with tea, toast, and lunch; the doctors; consultants and more junior doctors who review you after each cycle, check all your blood results and make sure you are ok for your next treatment and if not give you meds to get you there! And finally, the therapists at a place called The Well Centre (in Barnsley), who give you 6 holistic treatments to supplement chemo and make you feel a little more human, for free!
As you can see it’s a lot of people and that doesn’t even include the staff that do the various scans and tests you need along the way. When you add up all those who help to get you well, it makes you incredibly proud of the NHS. So many people complain about it going wrong, and yes, some appointments that should take an hour can take half a day instead, but overall, I couldn’t have asked for better service and care.
Now onto the harder parts, I‘m not going to lie, chemotherapy is one of the hardest physical and mental things I’ve ever been through.
I was partly prepared; I have family who have been through it but boy is it a complete roller-coaster. And I’m lucky, the treatment I have, called ABVD is one of the most effective treatments out there for Hodgkins, and quick in terms of results – it’s only taken me 2 months to get to this point of success but part of me suspects that’s because it is such aggressive, full-on treatment.
My treatment plan runs every 2 weeks, I have chemo on a Friday and the side-effects mainly hit me in that first week from Sunday to Friday. On the first 2 days I’m mainly buzzing on the steroids that they give you prior to chemo, which have had some interesting, enlightening moments – not least finally coming up with an ending for my book!
The reality of side-effects though is that you don’t have much control over them because you can’t take many medications to quash them, such as paracetamol and nurofen because they artificially bring your temperature down, and you need to keep an eye on that for infection purposes. One relief I have had is that is hasn’t made me sick – the drugs they give you for that, have worked for me, thank goodness!
My main bug-bears are constant aching (kind of like flu), loss of appetite, intense headaches, restlessness, horrible taste-buds where food just tastes gross, hot flushes, ridiculous tiredness and insomnia – essentially I’m going to need some cosmetic surgery after this because I look like I haven’t slept for a month!
But the good thing is, I get a week’s reprieve before it all starts again. In the 2nd week I feel far more human, still tired, but much more my self and able to do stuff, rather than trying not to have a fight with myself, forcing myself to eat or just laying in a zombie-like state watching TV! The challenge on the 2nd week, is trying to fit in as much fun as possible, in-between the next round of appointments.
The mental battle throughout this is just as hard, trying not to be miserable when feeling rubbish and trying not to be angry about the fact that there are few places I can go when I do actually feel well enough to get out.
There are several times already when I have been neutropenic (where your blood white-cell count dips too low, making our immune system practically none-existent) which has required me to take extra injections at home and meaning I have to be extra careful to not expose myself to any bugs out there – i.e. become even more of a hermit!
The next challenge is the hair battle. I’ve been weirdly lucky to keep it for longer than I thought, I normally goes after the 2nd treatment and I’ve just had number 5. I cut it shorter into a bob (like the main picture) a while back to prepare and it’s lasted a while like this but now it is really thinning on top and I know I’m going to have to be brave at some point soon and shave it off, but I’m scared to death about doing that.
From normally long, to wig choosing, to lots coming out on each wash, to my current half-scalf look – the hair loss is a trial in itself!
It’s hard enough not feeling yourself and feeling ill but your hair is so much part of your identity and I know that when I have to face myself eventually with no hair in the mirror, it’s going to be shocking and to me, it will just look awful.
I’ve got hats, scarves, the wig etc so I’ll have to get used to them. I know it’s temporary and I know it will grow back, but that will take months and I just think it’s the cruellest thing for people with cancer to go through, on top of everything else.
So, whilst of course I am so happy the treatment is working and all this is not in vain, I’m also very aware that I’m not even half way through yet – I have 7 more sessions to go, there are still more challenges and side-effects to overcome, follow-up appointments and what I can only imagine for anyone going through this to be that eternal fear – will it come back?, before I can finally begin to get ‘me’ fully back – but I am writing this on my bad week so I’m sure I’ll feel more positive again next week – see what I mean about it being a roller-coaster?
What I am immensely grateful for is the other huge team around me of family and friends that are sending supportive messages, helping out with the kids, calling in to keep me distracted, dropping in flowers and other lovely gifts and telling me all their news (because it’s way more interesting than mine!) – it all helps to keep me motivated so thank you!
Just some of the lovely gifts I’ve received, including handmade jewellery from my friend Rachael of Pippi Silver, green fluorite earrings from Gale Barker who runs the writing group I go to and my friend Gemma wrote to my heroine Author, Clare Mackintosh, who then sent me this lovely note! Feeling very spoilt!
A little bit of sketching is helping to keep me calm!
In the meantime, on my good days, I am trying to be as productive as possible and last week went especially well. I went back to one of my writing classes (it’s in a house so allowed!) and used my chemo-fog brain, continuing when I got home to do my ‘homework’, met up with some Wow Wednesday members for lunch and brainstorming about the upcoming Vision-board Workshop we are doing, got out in the sunshine with the dog, wrote two small writing competition entries and my first blog post of the year on my writing goals, took part in some of the #30daysketchbookchallenge, mind-mapped out my guiding words of the year (blog to follow on that next week) and finally met the lovely Sam Bunch for brunch at the weekend!
Sam wrote the fabulous ‘Collecting Conversations’ book a while ago and so I connected with her via Instagram and it was so nice to meet up with her in real life! She was up here promoting her new book – Menopause – The Hot Topic at Read Bookshop in Holmfirth and the event went down a storm with 40 women! We could have literally talked all day long about every topic under the sun – don’t you just love it when that happens?
Our fabulous WOW Wednesday group just keeps growing and growing!
Today I, a little-shakily from lack of sleep, headed back to our Wow Wednesday group, I begged the doctors and they’ve said I can go so long as I’m careful. Last time we had 6 new members and today another 2 new ladies! It’s going great-guns and I don’t want to miss out – it may just require a power nap in the afternoon to recover from lots of inspiring chat!
So, I’m hanging on to these positive days and it certainly helps you focus when you have a small window of opportunity to crack on with what you want to do. This weekend it’s my birthday coming up so I’m hoping for nice weather to get out into some fresh air with the family and a few other lovely things planned, so come on weather gods, play nice!
Until next time…
Juliet, The Curious Creative x
Ps for those who don’t know my diagnosis story and want links to symptoms and support, please read my initial blog post here
Note 1st; Apologies for the lateness of this one, I wrote it and then just needed to finish it off with pics but then Christmas Eve happened and I ended up half the day at hospital as I have a cold, therefore next chemo pushed back a week and lots of drugs to take….but on the plus side I now get to enjoy an extra week of Christmas without feeling pants…..so all is rosy!
A sunny day on Christmas day so I managed to get out for a walk, woohoo!
Now back to the blog…
Since I began my journey with The Curious Creative Club, I knew from the very beginning that I was still very much a novice in this arena with an awful lot to learn. Yes, I practiced my own creative hobbies of writing, photography and art, but so do many others, and by no means does this make me an expert!
Thankfully I’ve always loved to learn, from a very young age. My Mum says that as a child I was exhausting! Not in a physical sense but because I asked hundreds of questions a day.
I simply love learning, and it’s why I seek out nuggets of wisdom everywhere I go, whether that be at a book shop, through a magazine subscription, an art workshop or listening to an enlightening conversation on a podcast.
In the quest to improve my knowledge on all things creative, my curiosity has stepped up a gear; discovering new trends, new ideas and strategies that can help me take The Curious Creative Club forward.
Learning from other more experienced creatives and business people, I know is key to my development and that of this little business venture. Plus, we really have no excuse not to make the most of the age we live in, as a motivational speaker and podcast host of ‘Rise’, Rachel Hollis often comments; The wealth of free courses on the Internet means we are open to so much more, it’s just whether we choose to access that huge resource; if you want to grow, you’d be a fool not to – I couldn’t agree more!
The wonderful thing about the human mind is the ability to continually learn and with the likes of Google, Alexa (you really can ask that woman anything – I could have really done with her as a child!), social media and more books than ever on the planet, gaining that extra knowledge is seconds away, right at your fingertips, so long as you stay curious.
Of course, the beauty is that you then pass on your knowledge too, sprinkling it with enthusiasm and joy so that the creative community expands even further.
Despite being someone that can flit from one thing to another and get easily distracted, I have tried to absorb what’s out there, more than ever this year.
So, today’s post is a review of the amazing things I’ve listened to, visited and read that have been useful in giving me creative inspiration and knowledge.
I’ll talk through the books I’ve read and people I follow via podcasts, events (and on social media too – visit The Curious Cave for that part), so that you can also check them out, if you like and see if they resonate with you and could also help support you on your creative journey.
Here are my Top recommendations for each section, with some commentary on my Top 3 selections;
Firstly, Creative / business Books:
Just a few of the great reads that have inspired me this year
Big Magic – Elizabeth Gilbert
Elizabeth writes beautifully about creativity and her thoughts on its very existence – you won’t fail to be encouraged to try something new and to be swept up in her enigmatic voice.
Meeting the lovely Sara Tasker at a talk all about her book, Hashtag Authentic
Hashtag Authentic – Sara Tasker
Sara is the first person to write about her experience of Instagram, her story behind her hugely successful account @me_and_orla and shares all the hints and tips she’s learned along the way, a must for anyone starting out with a new Instagram account.
Collecting Conversations – Sam Bunch
This was a surprise read for me based on a recommendation from my local bookshop and I’m glad I listened, part auto-biographical and part intensive research – Sam talks about the key events and issues in women’s lives, through many different age decades, with really interesting and relatable results – great for writing research too!
Other great reads to consider;
Conscious Creativity – Phillipa Stanton
On Writing – A Memoir of the Craft – Stephen King
The Multi-hyphen Method – Emma Gannon
Hegarty on Creativity – John Hegarty
Company of One – Paul Jarvis
The Joy of Watercolour – Emma Block
Reading Books: Because if you are a writer, you also need to read!
The Family Upstairs – Lisa Jewel
A complex intertwining thriller where the house is as much a character as the cast. I loved this book and devoured it on holiday in 3 days, whilst simultaneously ignoring my family, oops! Lisa’s books always deliver on the character’s and the release date always fall in the Summer holidays – the only downside? A year in-between! My favourite author who just gets better and better.
Where the forest meets the stars – Glenda Vanderah
A beautiful story that keeps you guessing and almost believing the child character’s interpretation of the world before reality comes crashing down. I thoroughly enjoyed this book.
Big Sexy Love – Kirsty Greenwood
A debut, modern-day Bridget-jones type tale with a tragic undertone but some truly laugh out very loud moments! Great comedy timing and strong characters throughout who left you feeling uplifted. I’ll definitely be looking out for Kirsty’s next book.
This is going to hurt – Adam Kay
I have to also comment on Adam’s debut because it was such an amazing book, filled with both humour and heartbreak from the true reality of a junior doctor working un-godly hours in the NHS. You will laugh and cry and forever remember this book!
Other fab reads this year;
The Holiday – T M Logan
Ordinary People – Diana Evans
My name is Leon – Kit De Wal
Also note the last book on this list I discovered thanks to the Clare Mackintosh Book Group on Facebook (Author of I let You Go, Let me Lie etc); a good resource to find your next read and try different styles to the normal genre you go for.
2019 Events / Workshops I’ve been on:
Conversations of Inspiration – Live at Manchester with Mark Constantine
A truly memorable evening delivered from my favourite podcaster and small business advocate; we had a brilliant evening listening to her interview Mark Constantine of Lush, click here for my full review of that evening.
Sarah Masons Photography Workshop
Here I learned how to use my DSLR camera properly, within a small group in a beautiful barn in Hebden Bridge. Sarah took us through the steps slowly which was good for me and the surroundings provided lots of photo opportunities.
Vision Board Workshop – Yorkshire Writers
Another really interesting event that helped us home in our individual goals that we wanted to focus on for the next 6 months. For a more in-depth review on this, click here.
Other workshops that inspire my creativity;
Acrylic Painting Workshop at Art Group
Weekly Creative Writing group
My favourite Podcasts this year
Conversations of Inspiration – Holly Tucker
You just can’t fail to be inspired by Holly’s in-depth interviews of people who have started from nothing, sometimes struggled but then have forged their path into hugely successful businesses! Holly is so warm and is a true small-business advocate who genuinely cares and lends her advice regularly whilst remaining humble about her own success, and that is why I’m drawn to her style and strength. To get an overview of her year of interviews, check out her 2 Christmas specials out now, full of wisdom from her lovely guests.
Fearne Cotton – Happy Place
Equally as genuine as Holly above and doesn’t shy away from the deeper complexities of life such as struggles with mental health, addiction etc that some of her guests have been through. There is always something to take away and learn from this podcast!
Creatively Human – Ruth Poundwhite
Another inspirational woman who tells it like it is, but also has the courage to adapt to changing situations, she’s not afraid of a challenge! Ruth has a quiet determination about where she feels she wants to be and she takes you along the ride with her whilst talking about unique ways of working, for example if you are more of an introvert like her. I find her podcasts truly fascinating and come away thinking deeper about my little venture and where I want to take it!
Other amazing podcasts I’ve listened to this year:
Dreaming and Doing – Nicky Raby
Elevate your curiosity – Joanne Griffin
Dream and Do – Nicola Rae Wickham
Letters from a hopeful creative – Sara Tasker and Jen Carrington
Rise – Rachel Hollis
So, I hope this has been helpful to see just a glimpse of what is out there and of course there are more listed on my resource page – The Curious Cave.
I believe as much as the doing is important, so is the learning and researching, for example if you want to be a writer, it makes sense to read as much as possible – evaluate other’s author’s styles and see what appeals to you. If you want to share beautiful images on Instagram, then look at other’s accounts, see what works, but also understand how you can be different and use your own style and voice to stand out.
As I’ve said many times before I want this to be a sharing space too, so if you have examples of great podcasters you listen to or a book that really spoke to you this year on a creative level, then please don’t be shy and share in the comments below for us all to benefit!
And finally, this is the last Blog post of this year!! So, thank you for following along and keeping me company, I really appreciate all your support and comments.
I wish you all a lovely Christmas time, spending it with your loved ones and come New Year I hope we’ll all be raring to go once again!
I’ll be sharing my list of new intentions for 2020 (I love this time of the year for that – that re-fresh feeling) and where I want to take The Curious Creative Club over the next 12 months.
After a uniquely crazy, up and down 2019, I’m looking forward to delving into a new decade and the year that I’m focusing on getting fully well and back to my best, fingers crossed!
Happy New Year to you all!
Until next time….
Juliet, The Curious Creative x
Hi there, I’ve been missing in action a bit since my last post where I finished off all guns blazing, determined that Chemo wouldn’t completely effect my life and then reality check, boom – here come the side effects!
I’ve been waiting to find a few hours where I feel ‘normal’ but it’s yet to happen so I’m trying to push myself to get on with it, before it all drives me slightly mad. I am hoping for the elusive ‘4 days of feeling good’ this week before the next treatment on Friday, so you may see a flurry of activity from me then,…we’ll see.
But, first of all, can I just say a huge thank you to the many people who read my last post and sent such lovely encouraging comments. I was well and truly overwhelmed by the response and also so glad that you appreciated the way I wrote it, i.e. with positivity and a dash of humour which was exactly the way I intended it to come across.
As I get used to this new way of life, it’s naturally drawn me back to my word of this year ‘Value’ which has now taken on a whole new meaning whilst I’m having treatment. I’ve never under-valued my life and always felt very lucky and grateful for the opportunities that were coming my way.
But I think when something like this happens and you’re going through chemo treatment, you don’t appreciate the real basic, normal aspects of life (explained later) that get cruelly snatched away from you, albeit temporarily, in order to make sure you live a long life!
So, if you are putting off starting a creative hobby, business or just joining a creative group, because ‘normal’ life gets in the way, then there are lessons to be taken from the path I’m on the moment, and really value where you are at and that ‘normal’ life is a gift of an opportunity, without I hope sounding preachy.
If at this present moment in time you are feeling good and energised, I can’t stress enough, to take full advantage of that. We don’t appreciate feeling ‘well’ enough or make the most of using that to channel our work or creative goals.
I’m completely guilty of this, it’s very easy to get stuck in a rut, humans are drawn to a regular routine, and often the path of least resistance but when that wellness and energy is taken away from you, you wish you’d done more with that time.
However if energy is lacking both physically or mentally it’s worth addressing this and consider what you really want to do, not just feel able to do.
For example; If your dream is to paint your favourite view on a hillside, requiring to carry your equipment up there, stand up most of the day, be able to stand the potential weather elements etc could you do that or would your physical fitness hold you back? And if that is the case, could you change that by getting some hill walking practice sessions in first?
Similarly, is your mind up to a challenge, or do you find it difficult to get rid of that negative voice chipping away at your confidence? Does it make you stop before you even start and completely put you off?
This is not an easy one to tackle and you may need help to re-programme that inner critic, by speaking to a good friend, coach or mentor. If the investment gets you out of that stagnation and moving forward closer to your dream, then it is completely worth it.
There are many creative ladies in our WOW group and we all support each other, especially when the inner critic kicks in
Life is busier than ever, but that doesn’t mean you can’t build in some time for yourself. It’s all about priorities. You are just as important as every member of your family and if there is an imbalance of time devoted to other members and yourself then it needs addressing, or you’ll forever feel resentful and wonder ‘what if?’.
Many people I know now schedule their creative time or self-care time into their planner or diary, just like they do everything else, because it is that important.
It may be good to spend some time examining why it is so important to you – getting your thoughts down on paper makes it more real and actionable. Have it somewhere easy to hand to go back to when you need some extra encouragement.
If you find planning in time overwhelming then start off small and build up. Have a think about when the best time would be to do something, for example if you need complete peace and quiet, consider getting up 1 hour early one day, make a coffee and enjoy the peace whilst you create or if you are good at multi-tasking, whilst the kids are doing their homework on a Sunday on the kitchen table, set up stall next to them so you can do your creative activity whilst still answering the odd homework question.
This is the biggest dramatic change for me in this whole treatment process, more so even than how I feel physically. Because of the treatment I’m having and the type of cancer I have, i.e. a blood one (Hodgkin’s Lymphoma) I am likely to soon become what is called Neutropenic, which basically means I’ll have no immune defence to viruses and bacteria. This means for at least the 6 months I’m on treatment that I can’t go to any public places for fear of getting an infection, which can then be pretty dangerous.
So that is the likes of supermarkets, cinemas, concerts, shopping centres, shops, restaurants, leisure centres, libraries etc etc. Bear in mind, most of the time I am out and about, at these places and all the creative groups I attend, I effectively feel like I’m now in jail and have a huge case of FOMO!
My last concert before the week before treatment, James Morrison at Sheffield
I love eating out! This is going to be hard!!!
I never anticipated that having cancer would effect my freedom so much, just knowing I can’t go to these places is a huge mental battle for me. I have a new level of respect for all people going through this and find myself trying to think of places I can go, but other than walks in the fresh air (typical that it’s winter!), driving about and visiting friends ‘infection-free-only’ houses, there really aren’t many options. And I know it’s to keep me safe but it doesn’t make it any easier.
Me in my ‘infection free’ car , although I’m not sure it is the state my kids leave the car in!
So, all those simple places to visit that we take for granted, my message is; DON’T! We are incredibly lucky to live in a western society where these simple pleasures are on our doorstep. My life prior to this was full of making the most of these opportunities; I’d go to art festivals, author events, art demos and workshops, craft markets, writing groups and photography workshops – all to get a huge fix of creativity that would inspire my work and meet like-minded people.
I’m going to miss art demos and festivals!
Plus, of course I’d run my own writing workshops and our bi-monthly WOW Wednesday, local community accountability group, both of which I can’t currently do, although I’m hoping to join our WWs via Face Time!
So, if you can, and want to, then do. Get out and use that freedom, take your wares to a public craft event to sell, check out trends on the high-street, extend your skills by attending workshops – don’t think, oh I’ll get around to doing that next year! You can just never tell what might happen.
As a creative person, I’ve no doubt you’ll also have creative friends, colleagues or social media creative people that you hold in high esteem. I also have no doubt that many of you think, how do they do it, I wish I could be like them, I wish I could really go for it / make it into a business, etc etc.
I myself have many of these people and many of these thoughts BUT also don’t underestimate the fact that other creatives will look at you in the same way and because of this, you too have the potential to be a good creative role model and by that I just mean, YOU ARE DOING IT, not just saying it! – you are actively pursuing your dream.
Creative people usually by their very nature start off timidly and seek reassurance, each person taking that leap encourages other people to do the same.
You don’t have to have the most amazing Instagram account or shop, the mere fact that you ARE USING YOUR TALENT is impressive enough, because creativity is unique. What you do is special and even if you don’t know that yet, many people around you will believe it is.
To me, (and feel free to slap me if you don’t agree on this) NOT using your talent or skill is a crime and a huge waste of what could be a key ingredient of living a full-filling life.
Look at it this way, if our children hear us going on and on about wanting to write or paint or play the piano but we don’t have the courage/time/impetus to do it, what do you think that is teaching them?
We tell kids all the time, they can do or be anything they want in life if they put in the hard work, but if we can’t be bothered to do that for ourselves for something we tell them that we are really passionate about, then what message is that sending to them?
We need to lead by example and make our kids and others proud of us in the process. Nothing makes me feel more a-glow than when my children say ‘Wow, that’s really good mum!’ when I show them a piece of art work or read them something I’ve written.
To go one step further, if you felt comfortable doing so, I’d say pass on that skill or talent you have via workshops, and spread the creative joy and well-being benefits further. It’s a very easy way that we can help people, through doing something we love.
I couldn’t get by at the moment without my support team; my family, close friends, new friends, far-away friends and social media friends are all cheering me through this and keeping me entertained!
It goes without saying to not only appreciate your support team but support them right back. Every creative I know needs encouragement, our work is incredibly personal and so it’s scary putting our work out there for the world to see but the more you do it the more confident you will get and you’ll grow the audience who loves your work too. Plus, you learn from other immensely talented creatives out there too.
I’ve been thoroughly spoiled with flowers, books and even a chemo care kit, all from my lovely friends and family…
The word ‘value’ means so much more to me now, and whilst I can’t fully practice what I preach on all the above, I hope sharing these insights, when the basics are taken away from you, boosts and encourages you all to follow those creative dreams whole-heartedly in the here and now!
Make the most of your passion, health, time, freedom and support team to get you going, I promise you wont regret it.
Please do let me know if this has resonated with you or has helped to get you started on your creative journey at all in the comments below and until next time, hopefully on one of those good ‘4 days!’ ….
Juliet, aka The Curious Creative x
Warning this may make uncomfortable reading for some
I’ll apologise now, this isn’t my usual chirpy creative post, much as I wish it could be just another ‘normal’ post but I figured writing all this down may help me process what is going on, help it sink in and may help others too, so here goes…
For the last 7 weeks I’ve been having a myriad of health tests, and on Monday (4th November) I get the ‘official’ results . Patience has most definitely never been my virtue….for example I always have to finish an art piece in one go, when really I should leave it and go back to it, so this waiting in limbo has been a big test culminating in as much distraction as possible.
But you can’t distract yourself 24hrs a day and the 99% suspected outcome is laying heavily on my mind, so let me give you a little background, if purely to raise some awareness out there too.
Around 5 months ago I found a smallish painless lump on my left collarbone, I was seeing a physio at the time for a problem with my right shoulder and mentioned it to him as I thought I may have pulled a muscle or something. He said it wasn’t a muscle and to keep an eye on it.
And then I promptly forgot. Which is hard to believe but I genuinely did, we had lots going on at the time; we went on holiday at Spring Bank half term and then in July my husband lost his job, which came as a shock. Then we were into school Summer holidays, away again twice and just generally very busy.
Then 7 weeks ago, for some reason on a Monday morning I woke up and just instantly remembered, went to find the lump and realised it was bigger and so immediately booked in at the doctors. Then life pretty much went like this:
Looking fetching in my CT smock!
10 days later appointment at ENT Barnsley hospital. Instant biopsy. Next day Ultrasound. Wait. Wait meant to be 1 week, turned into 3 weeks as biopsy was sent on to Sheffield. Back to ENT for results; ‘Inconclusive’ and would need a larger biopsy done under general anaesthetic and they’d book me in for a CT scan too. The following week in for Pre-op assessment on Tuesday. CT Scan on the Wednesday which went slightly wrong as the dye went into my bicep rather than vein! Instantly look like Popeye on one arm and it bloody hurt! Manage to get CT done via other arm. Later that day they call me and say they think they can get a better biopsy via a different consultant, can I come in tomorrow? We arrive a little dubious and wonder why the same thing I had done before will now suddenly work. But then I meet Dr Cooke, the radiologist doing the biopsy, who explained more to me in 5 minutes than anyone else over the previous 6 weeks.
My very painful Popeye arm!
On the CT scan they had found 3 other enlarged lymph nodes, one under my arm and 2 smaller ones that had merged behind my heart as well as the largest one on my neck (which was now 3cm x 2.5cm). The biopsy that day would be taken under my arm as it was denser tissue and therefore achieve a better result.
Myself and my husband had researched extensively via Dr Google and had a best guess what it could be and Dr Cooke confirmed what we thought, that he was 99% sure it was some kind of lymphoma (hodgkins and non-hodgkins of which there are 60 types in total) but the prognosis was good because of my age, I was fit (yes I’ll take that thank you very much!) and everything is above my diaphragm which is also a good sign.
So now we are just once again waiting for the ‘official’ results back from Sheffield and then we can get on with a PET scan and then a treatment plan.
So as you can imagine, life is a bit of a whirlwind of hearing nothing and then lots of tests to then waiting again….meanwhile the lump on my neck is growing and I’m trying to get to grips with this slightly surreal new world we now belong to.
And I’m fine, honestly, this is not a doom and gloom story, but it is all very strange, particularly as I don’t feel ‘ill’ , although looking back I think there have been some signs, but ones I wouldn’t have attributed to this in a million years.
This is partly why I’m writing this, especially as October is a key cancer awareness month, mainly for breast cancer. But I do think it is also important to take a look at lymphoma too, particularly as it can effect all ages and is actually the 7th most prevalent cancer in the UK and yet you rarely hear about it.
So here are a few facts around the symptoms provided by Lymphoma Action, which have been a great source of information for me, not at all to scare you but to just be aware that if any of these show up, to head to your doctors and not forget about it like I did.
Out of everything this could have been, the Lymphoma suspicion is not the worst one, and is highly treatable and so I am immensely grateful for that. Dr Google had a far less rosy picture for other options such as a lump arising from spreading from another form of cancer such as lung or bowel and so I thank my lucky stars that my prognosis is good and I recognise that for others it’s a far more difficult and challenging journey.
We know that cancer now effects 1 in 2 people in their lifetime and that is a very scary statistic, just looking around other family members and friends though, I know that to be true.
But as I wade into these un-chartered waters, I’m learning things left, right and centre about myself:
So, what is helping me in all this?
For me personally it was never any good to tell me not to research. I’m obsessed with all things medical anyway, from my first ever job working for a medical charity and endless episodes of 24hrs in A&E but armed with some knowledge meant the Doctors’s suspicions did not come as some huge shocking surprise and already I understood a lot of the terminology.
If you do research though, look at reputable sites only, cancer charity sites such as Cancer Research UK and Macmillan are a good start.
But if you are of a nervous disposition who gets easily terrified then I wouldn’t recommend this route.
Boy did I need this in those first long 3 weeks of virtual silence. I did every creative class or event possible and met friends whenever I could, otherwise you will literally drive yourself crazy. I even cleaned the house -desperate times!
Don’t feel like you can’t be proactive and call the hospital when you’ve waited passed the time they said results would be back. I wouldn’t have known my biopsy had been sent on to another hospital if I hadn’t called several times.
Extended Family and friends
It goes without saying to talk about how you are feeling, I’m not especially great with this, preferring to make sure everyone else is ok about things, and just get on with doing my normal things and routine, but eventually I got better at it, even if it was just to say ‘FFS when are they going to call me?’ out loud.
Telling my Mum was really hard, not least because her brother, my uncle is also on his own cancer path and is very poorly and so I feel like my poor mum is stuck in the middle of both of us, but I knew I had to eventually or she would literally kill me anyway! She says she’s currently in denial, her way of dealing with it for now I think and like me she’s not overly fussy, which is a good thing for me.
This one has been on a mission to text me everyday and has definitely kept me amused and entertained over 7 very long weeks!
Also, there are different friend’s personality types that can help, some will be reliably texting you every day just to check in. Others have helped in getting you’re ‘news’ out to your wider circle which is a big help; some will ask you difficult questions but then may also be the ones to make you lol with their hilarious stories, All have value.
But if there are people who may rub you up the wrong way – for me it’s making too much fuss or being overly flippant believing it could all just be fine (when you know damn well it’s not), then steer clear, it’s their own way of dealing with it, but you won’t have the energy for that right now.
People who have gone before
And by this I mean all those million’s of people who have had their own cancer journeys, there are so many unbelievably inspiring stories out there such as case studies on charity websites but also the likes of Insta-famous BowelBabe, aka Deborah James who I was following before all this just because she is truly amazing in all the work she’s done to raise awareness of bowel cancer, despite being very ill at times with stage 4 of the disease. I’ve just read her book F.U Cancer which is full of humour but also realistic in what to expect.
Fresh air and walks
Staying still or pacing the house does not help me. Since leaving corporate life 3 years ago, walking in nature has become such a vital part of my week to keep me grounded, fit and inspired in my creative work so when I’ve got to fever pitch in overthinking whilst waiting for news I’ve taken myself out to just breathe, walk and have a word with myself!
And finally my husband, children, and the dog….and most definitely cake!
Telling my children was tough, but I stayed strong because ultimately I know if they see that I’m ok they will be less worried. I was honest, they’re 11 &13 and so were old enough to understand. I told them lymphoma is a form of cancer but a really well treated one and whilst obviously they are not jumping for joy, I hope that’s put their minds at rest.
I’ve put in a request for lots of cups of tea which they’ve signed up to, and I may even get tidier bedrooms, yeah right! I know I’ll get lots of hugs from my son who’s a softie anyway, and the odd one or fist-bump from my teenage daughter!
My husband’s been great, researching just as much as me so I felt we were in it together from the start. He also knows not to overly fuss over me but has stepped up his game in trying to be funny and I appreciate his efforts – he’s the type who laughs at his own jokes! That, some cooking, and the dog walks in the rain have really helped!
And then there’s Barley, my ever-happy bouncy cockapoo who jumps on the bed every morning and licks my face until I protest, – she’s the biggest cuddly teddy bear and you just can’t be miserable around her.
Barley cuddles help, and cake! I’m going to be huge the rate I’m downing cake on a daily basis!
So that’s it for now, my landscape has changed but this blog won’t, I may mention how things are going now and again or maybe a PS at the end of a post, but I’m not going to change the content to be all about this, or I will have no escape, and you know how much my creative endeavours mean to me so I need that to be very much my focus….I’ve already thought if I end up having chemo I might take all my art gear in and encourage others having treatment to have a go!
If there are any readers going through similar things I’d love to hear from you or if you have any family or friends going through this and you think this post may help, please do share, I’d really love that.
Until next time, keeping my positive pants on for tomorrow and attempting to be brave for whenever the first treatment will be…
UPDATE: So on Monday I got diagnosed with Hodgkins Lymphoma which is the rarer of the 2 possibilities, Non-Hodgkins is a lot more common. I have more scans and tests this week and next and then the plan is to start chemo on 15th November. There’s lots to take in and a 3-6 month journey ahead but at least now know and can get on with it.
Juliet, aka The Curious Creative x
P.s The next WOW Wednesday is coming up on 6th November, 9.30am at Miriam’s Kitchen Table, Kirkburton and as always everyone is welcome anytime, we constantly grow and evolve, so why not become part of our community accountability group? It’s FREE to join and there’s delicious crunches, cakes and much needed coffee to purchase (plus free re-fill)
Last week on Wednesday I needed some serious distraction (more on that later) and after dropping my daughter off at swimming I could tell it was going to be a nice sunset so I decided to head to one of the most iconic places in Huddersfield, Castle Hill that stands tall and overlooks the whole town.
I haven’t actually been up close for years, it used to be a place I’d drive to in times of trouble when I was in my twenties. There’s something about going to somewhere, still and solid, and just taking a breathe whilst taking in the view.
I drove up there, just at the point when the sun was starting to dip and walked around Victoria Tower taking in the silhouetted tower along with a few dog walkers and couples, the wind whipping my face.
I walked passed the steep grassy banks where as kids, we once lined up at the top and ran down on a school trip, replicating battle charges and then along the edges of the path that looked out to where the sun was setting to the far left of the town, over Saddleworth Moor in the distance.
After returning home, I posted the main image above on my @soothedbynature Instagram account and one of my regular followers commented that I’d broken her heart with the picture! I was mortified! But basically, it’s because this area used to be her home and she lives elsewhere due to her marriage ending and so sometimes my pictures are such a source of nostalgia for her they bring back some deep personal memories.
I immediately replied to her and she reassured me that it was just a reminder of the past, times changing and the years rolling by but that didn’t mean to say the here and now is not wonderful and that she still loves my posts, PHEW!
However, this got me thinking, in particular as this is an area I’m also covering in my new course that starts this week; ‘Writing from Personal Experience’ about how places can have such a strong pull for us and have a huge place in our heart.
For example, being from this town we have 3 local iconic landmarks, Castle Hill being the main one but also Emley Moor Mast standing at 330 metres can be seen for miles and also the Holme Moss Mast, reigns high above Holmfirth.
I have fond memories of all of these places, Emley Moor mast is always the beacon of home when travelling home from the South.
My son ‘holding up’ the mast on Yorkshire Day last year!
A BBC news article here, describes it as one of England’s iconic sites that show’s you are nearly home.
In the article, Vikki Brown comments: “I suppose it is a bit of a constant in a mad world, and, crazy as it might sound, it feels as though there’s an invisible string that tethers me to it.”
I know exactly how she feels, when there is so much uncertainty around us, and particularly in my own life at the moment.
I’m also one of the few people that have been up the 7-minute lift journey to the very top as I used to work for NTL Telecommunications who used to own the tower, and what a great view it is from the top!
Holme Moss at sunset
In 2014 the Tour De France came to Yorkshire and the highlight of Stage 2 of the Yorkshire Grand Depart was reaching the top of Holme Moss. It was a highly anticipated event for locals and we camped near the night before in order to get a good position to watch on the road. Thousands of people queued for hours to watch the cyclists speed through in just a few minutes but the atmosphere was electric and well worth all the waiting!
It made me wonder as a ‘wannabe published author one day’ whether Authors tend to put familiar places known to them within their stories, whether they just naturally creep in because you can see in your mind these places and describe them accurately and authentically.
I asked Clare Mackintosh (one of my favourite authors above who I luckily met at one of her events 3 years ago) whether this is true of her books. I knew in her first novel, ‘I let you go’ the famous beach in the book was one she knew well but was unsure on other locations in her subsequent novels.
She told me, ‘I Let You Go’ is partly set in a location based on Three Cliffs Bay, and I did lots of location research on the London Underground for ‘I See You’. ‘Let Me Lie’ is Beachy Head based, but I’ve never been there. After the End has the richest setting I think, not just because of the Chicago research trip I did, but because the memory of being in intensive care is so incredibly strong, so I could write it with authenticity.’
I think this is the key really, for me it would almost be a waste not to use that bank of memories we associate with place in a story or a novel because whatever the emotion connected to the place; whether that could be a fondness for your home town, a regular place of work, or even the intense experience of Intensive Care the colours, sounds, smells and atmosphere naturally gets ingrained into our subconscious without even having to think about it. The richness of these places then shows through in our writing, making it all the more special and hopefully brings the reader along with us.
This has happened with my own writing recently, writing short stories from personal experience, such as an exercise I did for homework for one of my writing groups a few weeks back. I chose to write about how it felt as a girl aged 9 going to The Working Men’s Club, every Saturday night with my parents, back in the early 1980s – it took no time at all to pen the piece and recall all those tiny details such as the smoke-filled rooms, the yellowing wallpaper, the style of clothes, the banter, the drink I’d choose, the ‘turn’ on the stage….you get the idea.
Yes this is me, at The Club, being forced into a picture by my parents looking cute but with a pint and a cigarette – I don’t know why they did this, but it became some weird tradition, lol!
Likewise with the novel I’m writing, ‘The Key to Everything’, there are various locations in there that are amalgamations of where I live and surrounding villages, in particular the protagonist joins a local art therapy group, the experience of which is largely based on the local group I attend.
Also, when writing about a counselling session in the story, outside where the therapist’s office is set, I’d described a village High-street that I knew, without even realising it!
So, I guess my message is to not shy away from this, don’t be afraid to tap into these places and experiences because your heart and soul will go into your writing and the reader will hopefully vividly see the environment and feel he emotion you want them to feel, it’s just another way of writing from our own personal experience, even within a fictional story.
If you need some extra inspiration to think about this, try these following small tasks to get you going:
These are just a few simple, fun ideas that will soon get your memories associated with place, flowing and you can then use in your writing.
Speaking of Writing from Personal Experience, my workshop on this subject starts tomorrow and I can’t wait!
I’ve had a few reasons to jot down and process some personal experiences myself of late and it has helped, even if it’s just to empty your head of lots of thoughts!
Next week there may not be a Blog post, although I’m hoping to get one out early on Sunday, but I’m having various health tests done next week so I’ll just have to see how it goes but hopefully definitely back the week after….
If you try any of the ideas above then please let me know and I hope it brings back some fond memories of places that you love.
Until next time…
Juliet, The Curious Creative x
P.S It’s another WOW Wednesday session this week (23rd Oct), 9.30-11.30ish at Miriam’s Kitchen Table in Kirkburton, for more information, click on the link, remember it’s FREE and newcomers are ALWAYS welcome!