Making Memories

I never really thought about making memories until the last few years, not because of all this saga going on at the moment or anything else that’s happened around us, but just because my children were growing up and I wasn’t consumed in nappy changing, making bottles and potty training. Instead my little girl Macey (who is 4 years older than Freddie) was blossoming into this beautiful young child and Freddie was transitioning from toddler to small boy. Macey would often ask John and I about our childhoods, mine was like a fairytale from start to finish and I always strive to give my children the childhood I had. I would tell them stories of our Sunday routine, driving to Cosham to collect my nan and grandad, roast chicken or beef always cooking in the oven, my dad and Grandad taking us to the local working men’s club, where we would have a bottle of coke to share between me, my sister and two brothers. We would always do a raffle and have a packet of poppets to eat on the way home. There I learned how to play pool and my inner Tom boy thrived in those years. We would walk home and would feast on a big fat roast, Grandad would tell us kids old war stories, whilst him and my dad would have a few whiskeys. By about 5pm they would be asleep on the sofa and grandad glasses would always be crooked on his face! Because dinner was usually served lunchtime ish we would have a sandwich tea, usually something like cheese and cucumber sandwiches and a half moon lemon marble cake for afters. Being a child of the 80’s and 90’s, on special occasions we would always have the odd shandy too. John would tell Macey and Freddie about his long summers at his grandparents who lived by the sea and how he was just dropped in the ‘drink’ to learn how to swim. For John the smell of the sea will always bring them memories flooding back and for me whenever I smell a roast dinner cooking, it always brings back a homely, safe feeling and funny enough the smell of cigarette smoke and mints combined always reminds me of my mum, even though I don’t smoke and neither does she now, that always reminds me of her and it brings a slight comfort.

So thinking about memories we both have as children and raising our children through them toddler years has been a story to tell. But what about making memories for now and the future? Do you just do? Do you go out of your way to make specific memories? Social media has played a massive role in memories from the last 8 years, timehop is a brilliant app, looking back at what you did 1,2,5 years ago. But some of them memories are going to be bad, well for us anyway – particulary this last year.

So it’s got me thinking. None of us know when our number is up. Should  we be making memories for our children and families now? Regardless of our prognosis.

Ive purchased a book called “Dear mum, from you to me”. It’s a journal that’s designed for any mum to complete for their children to look back on in years to come. The pages are clean and easy to understand. One question maybe, “what was I like as a baby”? Something a child won’t ask now, but maybe when they have children they may want to know, so you can write a whole page of what your child was like as a baby. There is also other questions such as “give me some interesting facts about our family”. It will take some time to complete, but once completed its invaluable.

Ive got memory boxes for both my children from when they were babies, it has things like their first blanket, first outfit, hospital wristbands and greetings cards. This has also got me wondering wether I should start a memory box for each child from me. Who knows how long I have left to live, I could live for the next 15 years and then there could be this miracle cure, or I could get hit by a bus tomorrow (sorry I know that sounds dramatic, but just using opposite ends of the scale) So with this in mind I have decided to buy a blue and pink box and start gathering memories. Items on my list to add are photographs of us all together, I’ve become very lazy at printing out photographs and just tend to store them on the hardrive or Facebook. Other items could be like a special event we have attended, putting the stub of the ticket inside the box. Clearly I realise that most memories do live in our heads, but with Freddie only being 5 I want him to remember as much as he can without it taking any extra effort from him.

So in a nutshell, memories can take us right back, sometimes memories pop up that I didn’t  even realise were stored in my brain, mostly when I smell a particular scent, or hear some music that reminds me of that time.

Should we just let memories be and let them happen naturally? Or do you thinking making and documenting memories is a morbid thing? Or just something we all should do? I believe it is something we all should do, regardless of our circumstances. I’d love to hear your thoughts xx

Stuck in Limbo

Yep them cancer cells are still there, multiplying like maggots in my lung nodes. My axilla nodes are sitting on the back burner for now, who needs armpits anyway?  Any slight cough, twinge, breathlessness all reminds me that this is potentially growing.

I met with my oncologist last Wednesday. She spoke to me, hubby and mum about these chemotherapy tablets called Capetibine . The side effects are very minimal compared to IV chemo and you get to keep your hair too!  I asked about any clinical trials going on in the area, one particular one I wanted to try was Immunotherapy. I don’t like speaking medical terminology to family and friends (that sounds so wrong, but I keep it on a need to know basis otherwise it confuses the hell out of them, nursey talk to normal people is confusing!!) so this trial I kept tucked away, so it was a shock to them when oncologist mentioned it that I got quite excited!

Unfortunately as with all clinical trials there is a strict eligibility criteria you have to meet, we think my history and diagnosis ticks all these boxes. A referral has been made to a specialist cancer hospital 60 miles away for me to possibly start this clinical trial. There are two options, one trial is called Keynote and the other is called Impassion, both use an immunotherapy agent called Pembrolizumab. Like all things that need referring, it takes time. I’ve already waited nearly 3 weeks since the secondary diagnosis to even be referred, mainly because I didn’t see my oncologist until nearly two weeks after the stage 4 diagnosis.

So yes, I feel a bit in limbo. I feel quite worried that I haven’t started any treatment yet and this cancer is festering away at my body. I’ve been told not to worry as it’s not attached to vital organs that’s pressing on systems that can affect my everyday living. To be honest, that’s really hard to digest and is quite hard not to worry when I look at my kids faces everyday and feel the guilt and dread that goes alongside it.

Part of me wants to throw the towel in and just say start me on chemo tablets now! But if I do I won’t be eligible for the trial, because part of the criteria is that you must have had only the first line of treatment only, starting chemo tablets is classed as a second line of treatment, so it feels like I cant win either way. I must hold on though a few more days to see if I’m eligible as this could be a groundbreaking new treatment for breast cancer. I know right now my cancer is incurable, so to have that tiny bit of hope that something is out there, makes me want it even more.

 

 

Someone like me

“please give a warm welcome to Jenny Yin, im sorry you have to be here Jenny but the girls will take great care of you” I click on her bold name, it takes me straight to her Facebook profile, yep, she’s about my age. Shit she’s got 3 kiddies too, looks like she’s single, happy profile pic though. A few hours later another notification pops up on my profile, “please welcome Sarah Husselfield, I’m sorry your eligible to be here, but the girls will take great care of you” I click on this ladies name too, she looks a bit older than me but not much, her profile is more private. I can’t see much else than her profile picture dressed in pink, doing some sort of muddy charity event. (names have been changed for confidentiality)

This happens 2 or 3 times a day, some days not at all, but this is admin of a secret Facebook group for ladies living with secondary and inoperable Breast cancer under the age of 45. Every time a new member joins it pops up in my notifications. It’s bloody scary, it really is. You look at their profile pics and think of their poor families, like mine, going through this ordeal. Then you realise, I was welcomed in this group in the same way. I am that poor person too. They are all someone like me.

So its happening. I cant quite turn off the notifications to the group when someone new posts as im a novice at the moment when it comes to secondary cancer, but equally my heart sinks when i see someone new joining the group. We have all got this connection, maybe its age? maybe its because some of us our mums to a young family? i dont know, but they just get it.

I originally started this blog to inspire other ladies going through breast cancer to show them that the journey isn’t all that grim. To be the mummy figure of future care and show people it will be alright. I was in two minds wether to even admit that i had secondary cancer on my blog as i didn’t want to scare people, worry them and make them feel that their journey may follow suit. Of course this isn’t the case, i know that now. I just wish we had a magic pill to make this all better, to show the world that this can be beaten. Hopefully in the future it can.

I dread to think that there is someone like me out there. But then again them ‘someone like me’s’ are my absolute support network, they just get it.

For those of you that have been following my Journey would know that I have been tested for Secondary cancer. I never knew about secondary cancer really before – even though I was a nurse. I’ve heard of metastases, which is pretty much the same thing, but never working in oncology, never really understood the meaning as much as I should have. So whilst I sit here aged 31 – wishing I checked my breasts sooner and more regularly, it is with a heavy heart that our suspicions were right. Unfortunately my breast cancer has spread to my lungs. Luckily for me it’s not formed a tumour yet and is sitting happily in my nodes by my windpipe. The road ahead is not a pretty one and I will never be cured from this terrible disease 😢😢 For now the doctors will try and keep it at bay by having more chemotherapy. Hopefully for many more years yet to come.
Some would say my Journey is too ‘open’ on social media. However, if I can get one more lady to check her boobs and save more lives, then my job is done.
For now we are burying this crap and going to try and enjoy a weekend away. Thank you for all your support 💛💛💛image.jpg