The Bell 🔔

Ever felt like giving the Big Bell a ring every time you walk past it? It’s like seeing a big red flashing button 🔴 that feels like it has an invisible sign on saying “PRESS ME” and you know you shouldn’t 🔕 but the childish urge is so strong. Well that’s me every time I walk past it. I just want to be a rebel and ring it every time I pass it!! 🔔 “Last orders please”

I know The Bell has mixed feelings for many patients, I was one of them so I appreciate and respect why. It’s a very personal and individual thing. I know that the purpose of the bell is to help patients at the start, and or during, and or at the end of their treatment. It’s there for patients to ring whenever they like. If you’re nervous of starting a treatment, if you want to mark a milestone, celebrate good results, but probably not just for walking past as it drawers a lot of attention,…. but it’s up to the patient how they use it, and of course they don’t have to.

There are a couple of reasons I was feeling a little uncomfortable about the bell. The first time I was introduced to it I was told “this is our bell that patients ring when they’ve finished treatment”. Of course I could have questioned that at the time but when everything is new and you’re trying to take everything in, it didn’t occur. I have secondary breast cancer (which means cancer has spread to another part/s of the body), so I’ll be on treatment indefinitely. Currently forever. If it were 2050 then there might be a cure but that’s 30 yrs away. Blimey, that would make me 86! Another niggle is the original poem which is next to the bell that patients are encouraged to read before ringing. I couldn’t relate to it for my personal health situation, maybe because I’d only ever seen the poem read and the bell rang by patients who had finished treatment?

This does not mean that I don’t celebrate or congratulate other patients when they ring the bell because I do. I’m genuinely happy that they’ve reached a milestone. All milestones are important in life no matter what they are. Any excuse to celebrate, clap, cheer and hug that’s me, (no hugging during current COVID-19 times though), but to ring the bell to mark the end of treatment…………………. Well I’m glad to say that there’s been a shift in mindset, including my own, and a shift in meaning.

Additional poem by patient Jane Brady

The bell now has an additional poem. It’s lovely. I think that every one can relate to patient Jane Brady’s words, and if there are more patients like me that were slightly uncomfortable at times with the purpose of the bell, then ring the hell out of it and make friends with it. I did! 🎉 I nearly rang the thing off the wall to celebrate my 100th chemo. It was liberating getting rid of the bell anxiety I’d built up!

Chemo #100

It’s NOT the end of treatment bell, it’s a whatever you want it to be bell and it’s for everyone.

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CT Scan Day

CT Scan done ✅ Although the hi tech contrasting agent injection machine played up a little, the team of experts were on it straight away, apologising unnecessarily to me as they worked their magic. It didn’t bother me, I was after all just laying with my feet up on a very expensive bit of kit and had nowhere else to be thanks to Pandemic times nicknamed ‘Rona.
I did at one point though wonder if I should apologise as I wouldn’t be surprised if it were my vein that was misbehaving rather than the much needed machine, as I had let it be pierced at such an early time in the day plus I had deprived it of breakfast. (Following the rules 👎😋).

All ready to go again and then one of the team reappeared to ask if I’d had a padded sports bra on. You’d be forgiven for thinking it was a back handed compliment if you were not experienced, however I knew exactly what she meant. I still had my weighted sport foams on 🙈 Mortified not because she had to remove them for me because I was hooked up to the machine, but because I was “experienced” so should have remembered to mention it. She was lovely about it. I was sure I’d worn them before but maybe that was my silicones? Apparently the test image was unclear so I’m glad they stopped to find out if the obstruction was something that I was wearing, even if I did feel a bit guilty. I only wasted 90 seconds of our NHS’s time but it all adds up and I’m aware and very grateful of their precious service.

3rd time lucky and we’re ready for take off again. A Hayfever tickle twitched my nose, “Not now” I told it, sneezing is NOT an option. You have to stay absolutely still. The contrasting agent is on its way from the super expensive machine into my veins so there’s no pausing now. A moment of panic was looming as I didn’t want to be the reason to have to repeat the process. How wasteful. Thankfully I won that battle 🏅 by opening my mouth ready to breath through it when given permission to, (as you have to hold your breath), and distracted my mind… it could have so easily have gone the other way though 🤧 Achoo!

So I just want to thank my nose, (feel like I’m at the BAFTA’s), for getting over itself and saving me the embarrassment of an involuntary move. I drank the 2ltrs of water to flush the the “agent” out so will have let my nose sniff some red wine as a reward, and will have a little taste just to check it’s ok of course. 😁 I thank the team at Clatterbridge Cancer Centre- Bebington too for their wonderful work. Especially during these strange times of COVID-19. There are too many patients who can’t get the treatment and procedures that they need at the moment which is absolutely devastating. I am very grateful and feel very lucky right now that my treatment and appointments have been able to carry on as needed ☺️

Thought I’d got the bright leggings in the shot!

The bright leggings – perfect “no metal” clothing

The Club

What better way to start this special anniversary, (5 years today since my bilateral mx with full auxiliary node clearance op), than to social media chat for a couple of hours with a lovely lady, who was waiting anxiously to be marked up with the sharpie marker pen, gowned in a crisp cotton NHS nightie and battling with those butterflies, waiting and waiting to go into surgery. We were total strangers so it was total coincidence that her shout out for positive responses was the first thing that I saw this morning online, especially because I’ve been hiding a lot from SM since lockdown. In the weird times of Covid-19 I kept getting distracted from the day to day stuff like getting up, showered, dressed, fed, watered, and the chores that make our home a comfortable place for us to spend all this extra time in. Stephanie might not have realised at the time that her question would also be helping others. SM chatting with her made me realise that I’m ready for SM again. Relating to what she was going through today was the tonic that I didn’t know I needed.  I’ve always felt that sharing experiences is important if it helps others or makes people smile. I’ve not shared much lately, just not had the headspace to get typing again.

There’s always someone there in the cancer support network to communicate with. I’m actually very lucky to be part of it as there are too many people in the world who are struggling with something in life and don’t know how or who to turn to. Your can drop in and out of the SM cancer communities and not feel judged for doing so. After all, everyone needs their quiet time as much as they need reassurance. It’s a safe place. A place of mutual respect. A place filled with experience, honesty, kindness and love. The only BS is the cancer itself. Over the years I’ve learned that as much as I love being part of this wonderful community I do have to take time out. Cancer will never leave me, or my husband, family and friends for that matter. Whilst Jase and I came to terms with that a long time ago it’s  important to us that we feel some kind of control with the reins.  We live with it every day but don’t want it to dominate our lives, so in unusual times like Hi a Pandemic lockdown for example feelings and thoughts can get exaggerated. This is obviously the same no matter what your circumstances. This is the longest time I’ve filtered away from SM cancer world. When I pop the cork on the champagne very shortly to mark a special day for me, I will toast the lives of those who have become angels this year, those who are struggling, and those who are here in this world lucky enough to be experiencing life for another day. Lots of love and support to you all. Cheers! XX

cheers 💓

Cheers and love to you all 🥂

Cancer Bully

Cancer you’ve taught me so much. Whilst I hate your teaching methods I can’t help but feel you deserve top prize for getting my attention.  You’re an absolute control freak. Just as I settle into a rhythm you remind me who’s boss. You’re such a mean bully with your huge threat to end life… that’s massive and has to be taken seriously. I’m a fixer myself so I wonder if you continue with your mission to destroy because you are not loved and haven’t experienced it for yourself. I therefore won’t stop trying to show you the huge benefits of love by dusting myself off when you knock me and getting up stronger. It is after all the experience of living with you that makes me grow…

…Plus I have Mum in my ear telling me I always “got away with murder” so she says this will be no different. Apparently I’ll figure out which smile you like best and you will be wrapped around my finger! 🖕

Smiling is infectious 😁

The Bombshell – Diagnosis, Treatment, Symptoms

Hello, Hi, thank you for stopping by. This is me, Sam, sharing my experiences to help others, and helping myself at the same time as reflecting and writing helps me to process.

DIAGNOSIS: I was diagnosed with breast cancer 18/12/14, age 40. I had an 8cm tumour in my right and Inflammatory Breast Cancer in my left which is an aggressive breast cancer as in it spreads very quickly. Both were independent from one another. Further tests over the following days confirmed I had stage 4 secondary breast cancer which meant it had already spread through my lymph nodes to somewhere else. In my case, to my lungs and chest bone. This is also know as metastatic or mets for short. How did I take the news? Looking back, I’m not sure that I heard it! For me it feels similar to looking back on a cringe worthy drunken night with some very vague recollections. My brain managed to protect me from the ugly moments of that day and put me straight into emergency crisis mode, which meant that through the numbness my focus was to reassure my husband and everyone else around me that I was going to be ok. I thought I had been quite vigilant when it came to checking myself but I had misread my symptoms as a sign of middle age. As if getting my head around turning middle age wasn’t harsh enough! 😁The survivor in me honestly thought I could just put our lives on hold for 6 months whilst I had treatment and surgery. I wasn’t ready to acknowledge or accept it was going to be a forever thing. I focussed on doing what was necessary to get me through, taking one step at a time.

TREATMENT: I had 6 months of intensive chemotherapy- AC Rapid then Taxol, I used Paxman Scalp Cooling (icecap) throughout my treatment. My tumur thankfully had shrunk so I then had a bilateral mastectomy with full lymph node clearance (removal). Because my clever strong body responded so well I was able to start a targeted chemotherapy Kadcyla, which is given to me intravenously every 3 weeks, indefinitely. We make the best of everything but then we were quite good at doing that before cancer moved in. We travel when we can and genuinely enjoy our life together. There’s no other way for us. We don’t sweat the small stuff and try not to think about the stuff we can’t control, instead we focus on what we are in control of. Having nice things in the diary is important and a sense of denial works for me. One of the hardest things for me to learn has been saying “no” to doing something when I’m already a bit busy, or if it’s straight after chemo as fatigue brought on by treatment plays a big part in our lives now. It shouldn’t be ignored but I rebel and always push the boundaries 😉 It’s a working progress!

SYMPTOMS: It REALLY is about knowing your own body. For me, both breasts grew a cup size, then they were tender and wearing a bra was uncomfortable as soon as I put one on. I then noticed a rash on the underside of my left which was under my skin like a blood rash, it appeared after showering then would disappear. I then got one small red raised skin mark like a spot about 1cm in size near my cleavage. Both myself and my GP agreed it was probably a dermatology problem and since we couldn’t feel any lumps (turned out that I had dense breast tissue which I didn’t even know was a thing until recently), and the under skin markings had disappeared, so I applied hydrocortisone cream for 2 weeks. My GP had made a note of the initial size of the spot so when I returned to our prescheduled appointment (2 weeks later), she referred me to the Breast Care Unit. 4 weeks later I had my Breast Care appointment and the one spot had turned into about three. Once diagnosed the raised skin mark spread into many right across my chest.

From top left; Life begins at 40! Haircut before treatment. Long wig. Venice 4 day getaway after chemo before surgery. Bob wig. 1st Chemo. Hair thinning.