Macmillan and Me
Macmillan Cancer Support. A big name in the world of Cancer.
When I was diagnosed with Stage 2 Invasive Lobular Breast Cancer, at Poole Hospital, Dorset, in December 2016, Macmillan became an institution which I began to rely on.
Initially I naively thought “I don’t need anyone like that, they’re there for other people, not me. I’m fine”.
But almost immediately, I was issued with several booklets, and throughout the next 2-year period, Macmillan’s information became invaluable. I would dip in and out of their online support pages www.macmillan.org.uk/information-and-support which were easy to understand and didn’t make me feel overwhelmed with ‘information overload’.
I logged in and registered for the forum, and I’d often click to see questions other people had asked that I wanted to but felt silly to. I have come a long way from that…now there’s no stopping me!
At that time, I was more of a reader than contributor. Throughout the Surgeries, Chemotherapy and Radiotherapy, I would read the bits I wanted to, and refer to the booklets provided by the hospital. And as the months went on, I had a few more given to me about that stage of my treatment, and these were written in a way they weren’t frightening.
A selection of some I had given to me.
Keeping a Diary
Prior to my first course of Chemotherapy, I attended a 2-hour Pre-Chemo Workshop that the hospital was running. The Chemotherapy nurses giving the presentation talked us through common factors, processes and some of the things we could expect. This was not just for Breast Cancer patients however, so it was quite generalised, but still very helpful.
On the way in, we were given our own Macmillan Organiser. This isn’t a person by the way…which DID go through my mind when they first mentioned it.
“Oh, great a personal nurse!”, not quite, love.
No this was a wallet containing our name and hospital number, contact details for the hospital, Chemo Hotline and three booklets Macmillan devised to help you during Chemo.
The idea for this was for the patient to keep names, numbers, helpful information, all in one place, and included a notes and diary section to record reactions, feelings, side effects experienced during the course of Chemotherapy.
Now not everyone is what I call a ‘form-filler-inner’ person – you know, the one who is generally used to admin work, always gets nominated at home to complete anything that has more fields than just a name and address etc etc… but I AM that person.
So, I thought – actually this would be very handy as I’m rubbish at recalling facts. I’ve always needed to write things down.
And I’m so glad I did use it – and I would encourage others to as well. The main reason being that I unfortunately had a lot of side effects during my course of Chemotherapy and I would often get asked for details – dates, timescales, pain scale from 1 to 10, temperature readings, that sort of thing.
And when you go back for your pre-chemo chat with the Oncologist to review how the cycle went, in readiness for the next one, trying to recall everything to tell her was worse than useless.
‘So, how are you?’
‘Yes, good thank you, it wasn’t too bad’
Erm – Memory – are you there?? Come on – think carefully.
So, I’d get my organiser out. Oh yes – there we go… not too bad??
Gold star for me for writing daily things down – she was VERY impressed!
As you can see, it may not be the neatest, but it worked for me. I could also easily see a pattern of what happened when, and when the next cycle came, I was (kind of!) prepared.
Macmillan Case Study
Once my treatment was over, I didn’t feel like I wanted to just ‘put it all to bed now’ or ‘shut the box’ on Cancer. Mainly because I felt the security blanket, I’d had around me for so long, was still required. I struggled with anxiety, and 5 months after hospital treatment had finished and I started my 5-10-year course of Tamoxifen, things got too much for me and I had a breakdown.
It was like the past year had caught up with me and decided that it wasn’t going to let me ‘get back to normal’, because my old normal no longer existed. I, however, was convincing myself otherwise. And failing.
Reading Macmillan forum threads helped in the respect of reading other people were feeling the same as I was, and I found myself looking at the ‘Getting in Touch’ section. I’d recently written a post for my personal profile on Facebook for my one year ‘cancerversary’, and had such an amazing response to that piece of writing, someone recommended I send it to Macmillan.
My email and Facebook post were picked up by a lovely lady called Rebecca, who worked on the Case Studies Team. She said how she really enjoyed reading my post, particularly about the aftermath. The case studies were people living with or affected by cancer, who shared their stories to spread awareness and help as many people as possible during their cancer experience – patients, carers, families and communities.
Rebecca asked if I could share more detail about my experience and how Macmillan helped me and asked if I could complete their ‘Tell Us Your Story’ form.
Oooh another form to fill in! I thought, excitedly. See – I’m a ‘form-filler-inner’.
I tried to summarise my story (I’m a waffler – that was REALLY hard!) and returned the form back. I then had a phone call with Rebecca to discuss my story and how Macmillan had helped me. I submitted a couple of photos and of the children too, as there were a couple of things coming up that, if relevant, I could be involved in, but not promising of course.
I felt really uplifted.
a) my story was interesting; b) my story could help others and c) that my face and story could be on the Internet associated with Macmillan.
Oh. Hang on…that bit filled me with dread – my face on a website??
Well a few months passed and then I had a rather exciting email. Rebecca was in touch again saying that they had an opportunity they hoped I might be interested in.
Their biggest fundraiser, the World’s Biggest Coffee Morning, was going to be launched for that year in September. They had produced a TV advert, where a young boy wants to hold a coffee morning for his mum, because his mum has cancer. To go along with the advert, to be featured in their PR material and Macmillan Website, they wanted a real-life family to be involved and wondered if my Son and I would be interested.
They would need to take some professional photos for the website, and come to my home for this, together with a few quotes from both of us about the impact cancer has had on both of us.
Oh. My. God. Really?? I’d never done ANYTHING like that before. My Son, who was 13 at the time jumped at the opportunity when I spoke to him, so it was a Yes from Us!!
Macmillan Coffee Morning Campaign 2018
It was Half Term at the end of May when my Son Jack and I had a visit from Rebecca, a member of the Coffee Morning promotional team, Nick plus a photographer. I’d tidied the house so much it was unrecognisable to the family.
Thankfully 5-month old kittens at the time, hadn’t wrecked too much in the house except for the net curtains, which now had some holes appearing where the little devils liked to hang on them.
Oh – and the oven door broke the day before Macmillan came… the idea was to bake and decorate this luscious cake and have some photos taken of Jack and I doing this, so I frantically called Rebecca and she said not to worry – it would all be taken care of.
Well at least they wouldn’t have any of my burnt offerings they’d have to photo-shop, I suppose!
We sat chatting with them, and the photographer said to just ignore he was there. All day, he would snap away and hopefully get some nice shots.
My daughter was quite put out that she wasn’t going to be photographed all day, but they did include her for some pictures, and she was happy. Then she got a bit bored and left us to it. As 10 year olds do…
We had a lot of fun, and really enjoyed their company. They stayed all day with us, and they said they felt quite at home with us – there are no airs and graces with us!
A few weeks later, they got back in touch with us and said that they are going to use a couple of the photos on the website to promote the Coffee Morning, and also one for their early promotional postal flyers. We were so pleased, and humbled that Macmillan used us in their campaign and for the ‘Why We Do It’ page of their website.
