As much as I love him when he is awake, a sleeping James is just the best thing… Continue reading
On the 23rd October 2012 I had an MRI which unfortunately showed that I did indeed have a fuckwit and actually, it was a big bugger.
On the 8th July 2014 I had another MRI that would show that fuckwit (and any other hangers-on) had gone and left me with (after extensive treatment) a designer va Jay Jay.
Today Dr Powell, gave me the chance to look at that first scan. And then I was able to see it beside my most recent scan. It helped prove to myself that I’ve overcome so very much, actually, huge amounts, in such a short space of time. That means so much to me, in a period in my life where I’m doubting everything (and I mean everything) I do from the how I’m living my life to how I deal with an email.
I have accomplished something along with an amazing medical team who saved my life.
21 months is nothing. I’m baby terms it is the precipice of the terrible twos. In project terms, it’s the crux of hard work, culminating.
In Cancer terms, its mammoth. It’s a big hairy, wooly mammoth. It’s proving you got through that ridiculously bleak time and through to the other side.
But as I go through each review, I truly feel that the real treatment for the Cancer that destroyed so much is actually happening now. At times, I actually wish I was having the daily trek to radiotherapy or the underlining nausea from that platinum chemo as I dealt with that way better than the dealing with the compelling urge to carry another child or the fact that my Cancer can return.
21 months? Smashed it. Life? Let’s try again. And again. And again.
I’ll spare you a picture of the inner workings of my vagina, but if you did want to see what I beat, let me know ;-)
Thank you so very much for all your support, as always, and for the pictures and texts and messages. What a lovely bunch you are x
My memory is shocking. Gone are the days where I could correct anyone on ‘facts’ or ‘reason’ because of my awesome memory. I can’t blame it on baby brain or chemo brain or even menopause brain. It’s just gone. I actually have to calculate things when I’m speaking them; write EVERYTHING down. Work stuff I can get by, but I’m forgetting stuff to do with me and that’s what gets to me.
Most days I can rush through, because I’m in a flurry of spreadsheets and queries and people.
Some days glide because somehow the planets have aligned and everything goes as it should.
And then there are days when it seems like time stops; just for a fleeting second. Maybe 5 seconds.
But those 5 seconds are so long, it can feel like you’ve remembered every tiny detail from a time long ago, from the clothes you wore to the smell of a room to touch of a speculum.
Yesterday as I walked through the longest corridor Whipps Cross hospital has, on my way to my complementary therapy massage (that’s another blog for another day) and for anyone that knows this hospital, it’s split into junctions. Pretty clearly defined and there is always a hustle and bustle of nurses, surgeons and family members trying to find their loved one.
Junction 7 is for breast imaging and ultrasound. I usually walk past this corridor as quick as I can because even though I forget to grab a birthday card the day after the birthday or forget to take my lunch 4 days in a row I can remember that area and that day so clearly.
I remember walking in and seeing Sue the receptionist and being ushered to waiting room A. I remember sitting on the polyvinyl seats and shifting every now and again.
I remember holding Pete’s hand and digging my nails in as the minutes ticked by.
I remember saying that I didn’t want him to come into the scan room, that I didn’t want a fuss made.
I remember that I was wearing my red tunic top with sequin hearts and my leggings that were probably a tiny bit too thin.
I remember walking in and undressing and lying on the cold bed with a paper towel for dignity.
I remember the TV screen which less that two years prior showed me a 20 week scan of my Cub.
And I remember the image of something else on the screen.
I remember the technicians face of baffled complexity and equally the face of her colleague she asked a second opinion for.
I remember the deafening silence when they realised what they were looking at; the speed in which they turned the screen off as though to spare me.
I remember apologising for making a mess of blood on the bed when I got up (fuckwit was a bleeder).
I remember waiting for the letter to get me pushed up the list for a gynaecologist and the nurse to tell me that I was seeing my GP the next morning.
I remember lying to Pete and to myself when I said ‘oh it’s just a fibroid’.
I knew. I knew it right there and then that it was cancer.
I say the 2nd November is the day that changed my life but the 2nd October played a massive part too.
I can’t remember a card and I can’t remember my lunch.
I wish, oh I wish I didn’t remember this.
And there we go. 18 months done. I saw the lovely Dr N again on Tuesday. After scaring her about being written about in this here blog (Hi!), she examined me and we chatted about Centre Parcs and compared Mulberry bags, and then she said that my Moo looked good apart from some scar tissue, but otherwise a-ok.
But we already knew that didn’t we. This was a ‘phoney’ appointment afterall.
Another thing that Dr N did though was make me cry. Well, not intentionally, and she didn’t pinch me or anything but we were chatting and I burst into tears. Call it the culmination of 10 days of anxiety, call it not having your rock with you (Pete lost his card in an ATM so then couldn’t get money out to get a train so couldn’t come up. He later found his card in his wallet, the numpty), call it whatever. But, cry I did.
I cried because I’m stressed out with work and simultaneously bored. I cried because I’m trying so hard to lose weight but I still look like an oestrogen bloated lump. I cried because I’m sad. I cried because I’m just down.
It could be hormones (most definitely is part of it) or it could be just hitting me now what I’ve been through.
Dr N and I agreed that counselling is the way to go and a review of my hormones. Maybe a step back from work (yea right!).
As soon as she said it, I knew I had to talk to someone.
I need to get this out. I need to get out of my head with a complete stranger and talk it alllllll out. Family and friends are fab but I often try to hide most of it for fear of terrifying them.
I had counselling when I was being treated (remember steroid rage? Jaysus, THAT was interesting) but we need to focus on the future now and my change in path.
I spoke with the wonderful Phillippa (a great oncology nurse and has been with me through everything) and she is going to refer me to a cancer psychologist. I kept her talking for 20 minutes so I know I need to get this out now. If you can call sobbing and snotting ‘chatting’.
I might be 18 months down after treatment, but I guess it never really ends.
I have a long way to go and I need to address my sadness, my guilt and take hold of my future. I need to look after myself a bit better.
No one suits relapses.
And Dr N told me to be kind to myself.
One thing at a time Doc.
Thank you, each and every one of you for your unrelenting love and support.
It means more than you’ll ever know.
And in case you didn’t see it…
Here’s to dealing with it. Cheers.
I’m not really into believing things at the moment; I don’t really have much faith anymore which is a shame, I’m jealous of people who take comfort in their faith.
However, I do believe that there is something ‘out there’. I have to think that way, I’ve lost too many people to think that there isn’t a place in the sky, bundling them altogether.
In my head, they are having tea and crumpets with lashings of butter (everyone loves butter in my heaven and maintaining weight isn’t an issue) and they would be free to come and go as they please.
They might visit us from time to time in the form of imaginary friends to children. Pretty sure that’s who James is chatting to when he’s playing. A person no longer with us, but it’s someone who loves him. He’s always happy and contented, I’m almost overwhelmed with calmness that it could be his Grandad chatting with him or my Evie entertaining my boy. I want to believe that it could be someone who didn’t have much or no time with him on Earth so they are making up for it now.
I know, I know, it’s an out there theory with no evidence blah blah blah but it’s the only thing that gives me comfort at the moment and the only ‘faith’ I can summon.
And yes, this is all heightened by my appointment tomorrow; for my last jaunt to the hospital, My Dad came to see me. I know this is probably my brain trying to protect me/ trying to calm my nerves/ trying to quell the nausea going round and round (delete as applicable). But last night I had another ‘visit’. It can’t really be called a visit, I didn’t see who it was and I could have quite easily have squeezed my own shoulder in my sleep (I’m quite handsey in my sleepy state, apparently) but when I was dreaming about sitting in the waiting room that I could tell you all about in precise detail from the leaflets spouting Macmillan services to the brass instruments hanging from the ceiling to the painted over windows overlooking the square which always has a digger in it, I asked if I was going to be ok. I asked it to no one in particular, I just asked the question. In return I got a shoulder grab and even though I turned my head as quickly as I could, I didn’t see who it was.
But that’s ok. That’s enough.
I believe a little bit more.
Now, where’s that straight jacket?
Tuesday 19th August, 2.30pm.
18 month check.
Bart’s hospital, West Wing
Seeing it written down doesn’t make it look scary. Seeing it written down in my scrawl on a post it note doesn’t make it look scary.
But scary it is and really thats a misnomer too. I’ve had an unscheduled MRI for a hiccup that I had and the results say its clear.
However, fear and anxiety hit me like a brick wall. Its the same every time. 7-10 days before the appointment, my brain kicks into overdrive and suddenly, its time to think about everything and then think about it all over again just for good measure. I think about there being something there on examination of my hoo-ha; I think about what would be the next course of treatment if there was something there; would I need a hysterectomy and then I think how that might be a good thing because then it would take away equipment that I no longer need, because thats how I think of my womb now. Redundant equipment. No longer necessary. No babies here. And then I think about what if wasn’t as simple as removing something, what if this was the appointment that told me that its back and its not going anywhere except to take me down with it.
And so on and so on ad nauseum.
Someone this week asked me if it gets any easier, I think my blurb up there says it all.
In some ways, yes, I think it has. But in many ways, nothing has changed at all.
The waves of panic in times when I need to be clear and concise, always catch my breath. I could be talking to someone about a meeting room booking system and BAM. The image of a concerned doctor drums into my head.
Does it get any easier? Like with many things, I think you just learn to live with it.
Send your prayers, if you pray.
Send your good thoughts and vibes, if you have them.
Send your love, luck and hugs.
And send your pictures of you in purple.
That gesture alone is worth so much to me.
I love you all and here is to the 18 month appointment, which will forever be known as the ‘Phoney’ one.
James and I, well we’ve currently got an affinity to sing as many Frozen songs to each other as we possibly can. I can turn round in the hallway and sing to him ‘Let the storm rage on’ and he will hit back with ‘The cold never bothered me anyway’. We’re like Idina Menzal and Kirsten Bell but in Mother and Son form. It’s weird but we love it.
We’ve probably watched the film a silly amount of times and we laugh at the same parts each time and James mimics the words and it’s aces.
He’s understanding the concept of the storyline now and how Christof and Ana fall in love (‘They love each other Mummy Aww’) and how Elsa makes things frozen when she’s full of rage (‘Mummeh, can I make ice things when I’m sad?’). He gets it; you have an emotion and you react. James is full of emotions and it’s amazing trying to figure him out at the moment. He knows that if he does the bottom wibbly lip pout, it shatters my heart into a thousand pieces and I would give him my everything. He also knows that if he does that whine which ALL the children in ALL the world know how to do, it makes me want scream into a pillow. So he does it louder.
Whilst he is exploring these emotions, which we are freely letting him do, he needs to know what feelings are after all, it has brought out the protective Mama Bear out in me more than ever and now (especially since we have hit full on into the ‘WHY’ phase) I’m finding myself lying in order to protect him.
Case in point:
1. ‘Mummy, why does there have to be baddies?’ ‘Er, well they are called baddies for a reason and they never win and you don’t have to worry about that because you’re a good person’
2. ‘Mummy, why you going to work? You sad bout work?’
‘I ask this same question everyday bubs, but mainly it’s to keep you in Lego pieces. Build Mama a house to live in please and I can stop working’
3. ‘Mummy, why can’t I have some more cake and not eat my dinner and drink your special juice (gin) that makes you laugh?’
‘Because gin is for old people and you’re are young’
And so on and so on. I know we all lie to our children, sometimes we do it to pacify them because after the hundredth time of ‘But whhhhhhy’, it seems like the only logical thing to do.
We lie about the Easter Bunny, Tooth Fairy and Father Christmas but this is all part of their upbringing. It’s to keep them children for as long as you can.
We’ve always tried to be as honest as we can with James in some things though, as we want to instil that in him and so that he understands certain situations. He has to learn and grow too.
But as we watched Frozen for the second time last weekend, there was an opportunity to be completely honest with him. A chance to show him a fact of life that no one can escape from.
As we watched the scene where the Mother and Father leave Ana and Elsa for a trip at sea, the music tempo changes and the scene gets darker. Something ominous is about to occur and your heart sinks when you realise they’re not coming back. James realised they weren’t coming back and with very teary eyes and a silent cry (that cry where there is no noise but they hold their breath for what feels like eternity) he turned to me and sobbed.
I held him so tight and tried to comfort him and seek out what had spooked him so much.
‘Don’t leave me Mummy’
‘Baby boy, I will never leave you, I will always be here. You will always have me’
I kept it together somehow and just like any 3 year old should, he got excited by the next song which was thankfully 2 minutes later.
But later on, once he was in bed, I thought about the lie I told him. Of course there was no way I was about to go on a mortality discussion with a child, a boy who’s main concern at the moment is how far he can kick his pants across the room when he goes for a wee. I just hope that he won’t remember that lie I told because I won’t always be around. None of us live forever.
It was the biggest lie I’ve told him, to protect his wee fragile heart. I don’t regret it. I don’t want him to think about me going away or leaving him for a ‘trip on a ship in a storm’. He doesn’t need to know right now what happens after that storm.
He just needs to know his Mummy (and Daddy) will always be here. Riding out the storm.
The lies we tell.