Phew…

… another scan and another massive wave of relief. Twenty-two months after being told the cancer had spread and I should be thinking months not years, three and a half months since having to stop treatment because of side-effects and the scan showed that once again everything is reassuringly stable. The tumours have never disappeared, instead they’ve shrunk hugely and I hope that they’re more like scars or husks than anything more sinister….but science and biology really never was my area of expertise!

As has been the case at previous scans I feel like it takes a while for the good news to sink in. I never jump for joy when I hear the news but I felt totally different waking up this morning to how I felt yesterday morning. It probably didn’t help that my pre-scan dreams were all about a mysterious faceless person trying to kill me and when that delightful episode finished I dreamed about people putting cannulas in my arms – it doesn’t take much to decipher what was going on there! This morning I woke up happy and as if a massive weight had been lifted. It helps that we booked a holiday the moment we got home yesterday. So in a couple of weeks we’re off to a beautiful looking villa in Turkey. I cannot wait.

Phew…

Timehop and Denial!

I have a lovely little app on my phone called Timehop that can show me what pictures and comments I posted on social media for that day a year ago, two years ago etc. Most of the time I find sweet pictures of my boys doing a selection of silly things which amuses me and keeps them amused too or, as I ran a baking business for several years there are lots of tweets about the amount I’m baking with pictures of greats piles of brownies and florentines etc. However I’ve been a little taken by surprise by some of my recent posts as they show that at various points things were not quite as I remembered them. The tweets and posts throughout May, June, July 2013 show that I was still busy, still baking but battling against a degree of tiredness and lethargy that I simply hadn’t acknowledged at the time or remembered properly since. I remember that my back was giving me trouble but I had forgotten how tired I was and the timehop posts have reminded me. I was slightly horrified when I received baking orders as all I wanted to do was lie down… It’s very odd looking back and seeing it there but I realise that there was clearly an awful lot of denial going on. I do remember at the time that I was hoping there would be a simple explanation for the back pain but I think I dismissed the tiredness – just put it down to working hard. It’s only looking back now that I realise how wrong it was. I’m in a good place at the moment have what I consider to be pretty normal energy levels and it’s such a stark contrast to two years ago. I feel quite sad looking back as it makes me realise how desperately I tried to ignore what was blindingly obvious. My timehop today took me by surprise. Alongside some very silly pictures of Max from his sports day two years ago there was also the following FB post from four years ago: – Image-1 It’s so odd to see this and realise that I’d let yesterday slip by without thinking about the date and remembering the significance but still perhaps it had contributed to the slight melancholy that overtook me in the evening. Pre-scan nerves certainly account for most of the stress but I wonder whether sometimes those significant dates sneak in to your subconscious. I was able to click on the post and see the comments that people have left – my favourite was from my very silly husband – “This is the first I’ve heard about this. Would someone mind telling me what the bloody hell is going on?!” – made me laugh then, made me laugh again today. Always good to be reminded that even when things are pretty rotten – it’s always good to laugh. Image-1[1]

Timehop and Denial!

Scans: part 2

I have lost count of the number of scans I have had. The first was back in 2011 when I was first diagnosed. This was a good one as the outcome showed no sign of cancer leading us to conclude that it had been successfully cut out.

The next two were dreadful. The first of these was at the beginning of September 2013 and this was the one that showed the cancer had spread to my liver and the surrounding area. This was followed by a further scan a month later in order that I could be approved for the Ipi/Nivolumab trial.  This one was horrid as it showed that there had been significant growth in all the tumours but it was entirely to be expected as I hadn’t, at that stage, had any treatment.

The next scan was the amazing, brilliant, it-might-actually-not-be-as-bleak-as-it-looked one in January 2014. This one showed that the treatment was working and that the tumours had shrunk by nearly 50%. This Claire and Andy and I toasted with champagne before even getting the tube home!

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After that there were scans every 6 weeks until November 2014 when they moved to be 12 weekly. So far, all of them have been good – they’ve shown either stability or in some cases, small amounts of shrinkage. I’ve said before that at every scan I always fear the worst my upcoming scan is no different. It’s due on 23rd July and I haven’t had treatment since 5th March and so my nerves are doing what nerves do…

It’s two days into the summer holidays and I’ve been having a really very lovely time with my boys. I am incredibly blessed and extremely biased but they really are wonderful boys and at this very early stage in the holiday I’m loving having them around and really enjoying their company. Yet, as is always the way it feels very bittersweet (a word that I’m sure I’ve horribly overused in the last two years). When I look at their little faces, when I hear them laugh, when they cuddle up to me on the sofa I am filled with an absolute dread that I will only be able to enjoy this for a very limited time. The more time I spend with them, especially now that I don’t work and so have a lot of time with them – the more painful it gets as the fear comes sneaking in and threatens the wonderful life we have together.  These thoughts are hugely heightened pre-scan and most of the time I’m much better at keeping the under control.

So, like I do every night, I shall go sneaking into their room, straighten out their duvets, push their hair out of their faces and kiss them and tell the I love them. This is all that I can do. I cannot control the outcome of the scan but I can keep on hoping that this little ritual will continue for an awful lot longer….

Scans: part 2

Scans: part 1

In the weeks running up to the scan I begin to question every single ache and pain and worry that it might mean something. As well as this, the ludicrous number of irrational and often paranoid concerns begin to take over my head. The second scan took place in March 2014 when Andy was away in Australia for work and it was the day before Max’s 6th birthday. So for this scan I was terrified about how I’d tell Andy the imagined bad news whilst he was thousands of miles away and unable to get to me in any great hurry. I was also wondering how I’d manage to put a smile on my face and celebrate Max’s birthday if it all went wrong. On top of this Andy and I had promised ourselves we’d book tickets to go to New York to celebrate 20 years together if the scan was ok. Thankfully it was fine but the fear was almost paralyzing. This was one of the worst ones but at the September 2014 scan I convinced myself that I’d be punished for having had a big party to celebrate my birthday 3 days before. Somehow I’d have upset karma by celebrating turning 38. At the November scan I convinced myself that it was inevitably going to be a disaster as I’d been on the trial for a year and that was enough of a reason that the drugs would stop working……

So the pre-scan nerves are pretty terrifying but as scan day approaches the real fears kick in.

As I lie in the CT scanner and later as I sit in the outpatients department waiting for my results the same imaginary conversations go through my head.

I am filled with absolute dread and fear that the conversation will be like the one on Sep 24th 2013 when I felt like my world fell apart. When suddenly the life that I had imagined, where Andy and I would grow old together and my beautiful little boys would turn into beautiful young men, was ripped away from me.

I imagine that they will tell me that the scan shows some growth in the current tumours, or that there are new tumours. I imagine that my lovely smiling nurse will be looking sad or that the amazing Dr Larkin, who I’ve not seen since October 2014 will have been called in to see me to give me the ‘bad news’. I basically fear that the rug will be once again ripped out from under my feet and that the odd but rather lovely limbo that I currently live in will disintegrate.

Andy, Claire, my Mum and Dad have on various occasions all sat with me whilst we wait for results. They all know that I almost lose the ability to speak, apparently I go a bit grey as those terribly terrifying but very possible scenarios go through my head.

Strangely when I do get given the results the feeling of relief is remarkably short-lived. I think it must just be too complicated to be able to rejoice in being told that this time it’s all ok, this time, you’ve got a way with it.

At the November 2014 scan, once again, all was fine and because I’d now been on the trial for a year the scans have moved from 6 weeks to 12 weeks. Various people have asked me with this will give me more cause for worry but actually it doesn’t. I am seen so regularly by the doctors and I have blood tests before 2 out of 3 treatments in each 6 week period that I know that if there was anything to worry about the alarm would be raised. Instead I am relieved to have a greater break between scans. I only ever think ahead to the next one and living life in 12 week rather than 6 week cycles feels very liberating.

Turns out the fear of waiting 12 weeks is actually really paralyzing! The February 2015 scan (again stable) caused absolutely terror that all sorts of awful things might have happened in the previous 3 months. It’s still nice having a longer gap between scans as there is definitely more down time but the pre-scan nerves are definitely worse!

Scans: part 1

A moment of sadness…

Again, this was written earlier in the year and I wasn’t sure whether to include it as it’s not the most cheery of posts but in that the point of this blog was for me to share how I feel about living with melanoma it seems wrong not to add it.

January 16th 2015:

It is the night before my nephew’s 18th birthday.

I was particularly blessed as I got to meet him when he was just a couple of hours old. He is the oldest of my fine selection of eight nephews and nieces but being the first he was the one who made me an auntie for the first time and to this day he still calls me Aunty Lucy. Like his delightful brothers he is an absolute treasure – everything you could want your boy to be and in that I have two little boys I look to him and his younger brother to see a glimpse of how my two might turn out. What I hate, is that I know that it’s so unlikely that I will get to see my beautiful boys see this particular milestone. So whilst I cannot wait to celebrate with my nephew tomorrow, tonight I am struck down with the bittersweet sadness that seems to rise up at every significant occasion. I cannot bear that I will not see either of my boys turn from boys to adults. I so desperately want to see how they will be. ..

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A moment of sadness…

The 18 month milestone

I wrote this back in March (2015) and as it captures my mood at the time I don’t want to change it so will leave it as it was written.

Right at the beginning of this blog I explained that when I’d asked for a prognosis from my Doctor at the London/Barts she’d said worst case ‘months’ best case ‘not years’. I had taken this to mean that the very best I could possibly hope for was 18 months. Obviously this is a slightly random conclusion to have drawn but it wasn’t my best day and so the 18 month thing made sense and it stuck. So, in my mind, March 24th 2015 was as good as it was likely to get for me and based on how rapidly I declined over the months following that appointment it seemed impossibly far away.

Since changing hospital, getting onto the drug trial and responding so well to the drugs I realized that the March 24th date was even more random as my previous doctor hadn’t taken into account the new drugs and was basing her pretty stark prediction on me having very limited option however the date still struck a chord.

Well this week it happened, March 24th 2015 snuck up on me and I spent the whole day being unbelievably grateful that I was still very much alive and also extremely paranoid that some awful freak accident would befall me that day and the irony would be too much! The thing is with anniversaries and dates is whether you want to or not they get into your consciousness and make you think.

This one was a good one as whatever else is going on I’m definitely very much alive at the moment and the Doctor who didn’t think I would be wasn’t stupid or ill informed she knew enough to know that lots of people who found themselves riddled with melanoma tumours around their liver generally didn’t survive for very long. So I am definitely one of the very lucky ones. So this week I’ve been thinking about how 18 months just would not have been enough. It’s a stupid thing to say as I’m sure very few people get to a point where they do think, well that’s ok, I’ve had enough of being alive now but I cannot believe how quickly the time has gone past. I am no more ready to say goodbye to all those I love than I was back in September 2013. Andy and my boys are not more ready or prepared to live without me.

The 18 month milestone

Holidays

One of the ironies of my situation is that when you know your time is a lot shorter than it ought to be you imagine that you can at least fill your time with amazing ‘bucket-list’ type holiday adventures and yet booking holidays and forward-planning is a minefield.

On the one hand, Andy and I and the boys have been away more over the last 22 months than we ever have before. We have, whenever there has been an opportunity, indulged ourselves with amazing breaks in beautiful houses and hotels throughout England as well as our annual trip to Greece and our holiday of a lifetime trip to New York. We have been incredibly spoilt and very lucky. However, every break or holiday we have booked as had to be done very last minute. They are always booked on the back of a good scan and I wouldn’t dare do it any other way. Ultimately this is absolutely fine. We will get to do very lovely things and go to very lovely places but I do miss the lovely excitement and anticipation of knowing that a lovely holiday is in the future. Again, it is a very real reminder that our lives are not normal and that nothing can be taken for granted.

Back in March, when I was suffering from the side effects of the drugs and was on my first dose of steroids we were hoping to get away for some Easter sunshine. The borough I live in was having a late school holiday and the second week of the boys’ break fell out of traditional school holiday season and so there were lots of amazing holidays available.

I spent ages plotting and hoping that we would be able to book one. Andy has booked the week off, I scoured the internet trying to pin down whether The Canaries will provide a sufficient degree of warmth, whether we’ll opt for a villa with a pool or try a hotel However  because the pesky Melanoma has reared it’s head it threw a side-effect shaped spanner into the works. So, booking that holiday was for once not dependent upon a good scan, it was  dependent on whether I was still on the steroids that were controlling the side effects and the timing of a potential next treatment. As I’ve said on a previous post – we did end up going on a lovely holiday. I  had been off the steroids for a couple of days and the next treatment was booked for the week I returned. As it turned out this was the one clear window as the symptoms re-occurred within 24 hours of returning home but it makes me realise how lucky we were that I was so well when away.

Me and my lovely boys in Lanzarote
Me and my lovely boys in Lanzarote

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Today is the 17th of July, Andy has two weeks holiday booked for the middle of August but as yet we haven’t booked a holiday because once again I’m waiting for a scan. My next scan is the 23rd July and if that’s OK we’ll book something but until then I feel like it’s too risky. On the one hand I haven’t been able to get travel insurance that covers my melanoma and so if anything were to arise it would be very expensive and on the other hand I think there’s a degree of superstition that I fear any sign of complacency will somehow translate into a bad scan. Perhaps not entirely logical but I feel perfectly understandable!

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Holidays