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Cancer and other stuff

Noggin deja vu

I mentioned in my last post how, in addition to the wedding excitement, something else had been going on and I guess most people know by now that I have a second brain tumour. Since we got back from honeymoon, it’s been one long round of tests, scans and consultations and I haven’t quite worked out how I feel about any of it so I’ll start with the facts for now.

Having had a tumour removed in April this year – successfully and with no real subsequent problems – I have to have scans on my brain every three months. A week before the wedding, my regular check-up rolled around and I was due for the results on the Thursday. I finished work on the Wednesday and toddled off to see Naomi the brain doctor, armed with a long list of wedding-related admin that needed doing that day. The usual bridal stuff – spray tan, waxing, nails. No-one was expecting this scan to be anything other than normal so the plan was: nip in to hospital, get the green light to see them again in three months then get on with the rest of my day. There was a lot to do/sort so I told Andy to stay at home and wait for the delivery of the wedding cheese and crates of elderflower fizz for the party.

I got to the hospital a little early and Naomi wasn’t yet there so, after flicking through an old copy of Grazia (seriously hospitals, there’s a newsagent upstairs – is it too much to ask to not have to read about ‘spring trends’ in September?) and figuring out when I would get chance to meet up with family who were arriving the next day, Naomi arrives and calls me in. She explained that, while the site of the original tumour bed was clear, a new tumour had been picked up in a completely different part of the brain – still on the left side, but in the lower part, the part that controls balance. While I sat there, open-mouthed in shock, she quickly reassured me that Mr Kitchen (the amazing surgeon who had done the first op) had been consulted and, having reviewed the scan, he was sure that, again, it was operable. It was smaller than the first (7mm vs 22mm for the first one), not in a position that was likely to cause seizures like the first had, and her advice was to go and have a lovely wedding and honeymoon and they would make a plan with Alison whilst I was away. If you’ve ever had a wedding, you’ll know that tension is somewhat on the high side the few days before so obviously getting this news was not ideal. I stumbled outside, rang Andy and my parents and quickly told them what had happened but that I wanted to keep this to ourselves until after the big day. I couldn’t face any tears and all the questions that inevitably come with something like this. I hadn’t even figured out any of my own questions by that point, I just sort of nodded dumbly, agreed to call Naomi when we got back from Greece and headed straight to my spray tan appointment, barely allowing myself to think about what I’d been told. Thinking back now, I can hardly remember much about the 36 hours after that appointment, it was just a whirlwind of deliveries, packing my dress and shoes for the hotel, family and friends arriving en masse, being at the venue the night before setting up flowers, candles, tables. Luckily The Godmothers were on hand and, having quietly told them the news, they just did their usual awesome thing of swinging into action and being amazing. I left the venue on the Friday night excited about the next day, but also queasy with the thought of having to hold it together when really, I was still utterly reeling and in complete shock.

The wedding came and went, and we flew off to Greece on the Monday exhausted but happy. When we arrived home a week later, I called Naomi who said Mr Kitchen wanted another scan done just to make absolutely sure they knew what they were dealing with, and she suggested that, as I already had bone and CT (lung) scans booked that week anyway, I should go ahead with them as between the three of them (Naomi, Mr Kitchen and Alison) they wanted a full picture of exactly everything that was happening everywhere in my body before making a final decision about what needed the most immediate attention. I had a horrible week of waiting rooms and injections, involving three scans in four days and the following week I saw Alison for the first time since July when I’d trotted off into the sunset having been given a two-month chemo break to focus on the wedding. She was as disappointed as anyone when she’d been informed by Naomi about the brain tumour (and remember, after the first operation in April, I’d been told my chance of ever having another brain problem was low – around 10-20 per cent so to have a second one so soon caught everyone off-guard). She had the results of my other scans and while nothing had shown up in the bone, the disease in my lungs had got a fair bit worse. Which I knew really, the cough that’s been occasional over the last couple of months is steadily becoming more persistent. We had a long, very candid chat about where I’m at, what my options are and she suggested that, assuming Mr Kitchen was still relatively happy with what the second brain scan revealed, I should go ahead with the surgery. While the tumour was fairly innocent at that stage, if they left it to grow I could start running into neurological problems which could “quite severely affect your quality of life.” I don’t actually remember when exactly quality of life starting becoming the buzzwords that they are now but I think it’s an indication of where this whole situation could be heading in the (near?/distant?) future. Put it this way, it’s been a very long time since a good outcome has ever been floated as a possibility.

I went back for the second brain scan result last week, and while there are no other nasties anywhere (that they can see anyway), this tumour is growing quite quickly – an extra 3mm in just 2 weeks, so I’m having surgery on Tuesday morning to get the little sod out. I’ve been reassured that, while it should be relatively straightforward again, it’s going to be a little more tricky than the first op as it’s sitting by a large vein. I’ve seen Mr Kitchen’s hands, they’re steady. Last time I was home the day after surgery. I’ll be reminding myself constantly of these things tomorrow when I get admitted. There was talk of whether a special type of radiotherapy called Gamma Knife would be more suitable but there would be problems getting the funding for this – apparently there are v strict guidelines which say your other cancer needs to be ‘stable’ and sadly the disease in my lungs is anything but at the moment.

The bigger problem (and yes it’s possible to have a bigger problem than a tumour growing wildly in your noggin) is what options I have to try and get the lung disease under control and the stark fact is that there is really only one thing left to try. Over the past three years, I have had no less than 8 different types of whizzy, sexy drug that everyone’s had such high hopes for, including the trial drug that came to nothing and the super expensive but oh-so-exciting drug paid for by the Cancer Drugs Fund that, again, did diddly squat. The only option left is an old drug that hardly gets used any more, that, in Alison’s own words, will have to be “dug out of the archives”, but which is the only one I haven’t tried. In her opinion, this isn’t likely to be successful – about a 15 per cent chance of it doing anything and, additionally, I’m now running into symptoms from my lungs that are only going to get worse, not better (although they have things they can do to try and ease that). So when I get home from having my head drilled open, again, I have to make a decision about whether I even try this drug. I am aware that at least some people reading that may have just done a sharp intake of breath – “of COURSE you must try it, this could be the one!” – but if you knew what I knew about how shit chemo is and how soul-destroying it is to keep trying and trying and trying when nothing is working, I suspect you would have some idea of the predicament I’m in. Of course there is another part of me that thinks “what if?” But the devastating reality which I have to accept is that time ISN’T SOMETHING I HAVE THE LUXURY OF ANY MORE. I know people don’t want to hear that, believe me I don’t either, but if, as Alison says, I could (read ‘could’, not ‘definitely will’ – even Alison doesn’t have a crystal ball) start feeling poorly from cancer within a relatively short space of time and I can tell from my cough and the fact I’m really quite tired a lot of the time (not exhausted by any means, just not the spritely bouncing thing I once was) that that’s already starting to happen, then do I want to risk spending 2-3 precious months feeling crap from chemo, it not working and everything really starting to go tits up anyway? Am I better off grabbing my ‘well’ time with both hands and bowing out gracefully now? But what if I do give it a go and it slows it down a bit, giving me those extra precious months?

I’ve got a lot of thinking to do over the next couple of weeks, if you can think clearly when you’ve just had another sliver of your brain cut out and for once I’m not asking for anyone’s opinion. I know everyone has one but opinions are meaningless unless you have the context I do. People often ask me if there is anything they can do and I usually say “no I’m fine really, but thanks for asking” but on this occasion I have one particular request of all of you – please, for God’s sake, don’t do the bloody head-tilting. I don’t want, have never asked for, have absolutely no use for, your pity. I’m in a shitty situation but I’m working through it, there are plenty of people in the world who are in much worse situations. Don’t feel sorry for me, I can’t bear it. The words “amazing” and “inspirational” – bandied around ALL THE TIME when talking about someone with cancer. Not that I don’t think people who are getting the f*ck on with their lives in the face of something as crap as this isn’t to be applauded, it totally is, but amazing and inspirational? Being amazing for having cancer? What an utterly shit thing to be deemed amazing for. I am not cancer. It’s a thing that happened to me and is now, obviously, a big part of my life. But it’s not who I am, please please remember that. I still have faults, insecurities, inconsistencies, annoying tendencies. I’m still trying to be a better person and everyday I have a lot to learn. I’m not amazing because I have cancer. I’m not amazing at all, I’m just trying to ‘be’. And I’m scared and I’m trying not to be too, because being scared of cancer is worse than having it.

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10 thoughts on “Noggin deja vu

  1. Florence on said:

    You are right. You are you. You are the sum of your experiences. You are this ‘full of life’ girl which happens to have the big C. This mean little bugger which challenges you in every way possible. This makes me angry. Super angry. But you so understand what all this is about: learn, love and getting on with it. No pity. No fear. Kick that little s**t in the guts next week!

  2. laylalayla on said:

    I’ve been reading your blog for a while now, since I was hijacked to planet cancer myself. (I was one of the few lucky ones, so far I have defied the odds).
    I hope it helps a little to know that there are people out here, miles away, who are thinking of you, willing you on, saying a little prayer now and then, haranging God to give you a break.
    Of all the cruddy, crappy hands to be dealt, you have one of the bleakest. Yet you’ve faced it with dignity, humour, resilience and resourcefulness. In whatever way it may come, you deserve a break.
    The only thought I did have is whether you could have some radiotherapy for your lung mets?
    I will be thinking of you next week. I hope you have a safe and peaceful time in hospital.

    • They think lung mets now too big for quick blast of cyber knife. If/when I get significant breathing problems, they can do a bit of radiotherapy for symptom relief so that’s something. V nice to read your comment, thank you

  3. Gail Moore on said:

    I know how knowledgable you are and only you know what is like to be in your shoes! And lucky you -you have a wonderful husband to be there for you& family & many friends. (And he is lucky to have you! & the little one too!) Will be thinking of you on Tuesday -and you breezed thru last time, no doubt will again. And keep watching for the good looking ?anesthetist.That would take your mind off things for awhile!!! Gail in Ohio

  4. The odds of you having another brain tumour was 10-20% so who knows, you could be one of the 15% that this new chemo works for! Maybe this time you could beat the odds but in a good way!

    Massive decision I know.

    I don’t know if you’ve ever read it but’ The Cancer Assassin’ blog is fantastic! Laura (the writer) had exactly the same (termina) cancer as my sister and she is the only person I have read about who has defied all odds. She did have chemo but she also completely changed her life; what she ate/drank, what beauty products she uses etc. who knows, it might be a load of sh*t but when conventional medicine doesn’t have much to offer then I guess anything is worth a go….

    I hope that you defy all the odds too 🙂

    Gem x

    • Sophia on said:

      Wishing you a swift recovery from your surgery this week and all the strength you need to make the right decisions, for you, in light of these developments. So glad that you had a fantastic wedding day- your dress was beautiful and unique! Thinking of you, Sophia x

  5. Sarah Lou on said:

    I’ve been a reader for quite some time now and I just wanted to wish you lots of luck for tomorrow and speedy recovery.

    I think your blog has touched a lot of people – and all of them will be thinking of you tomorrow. x

  6. methenandnow on said:

    wow…

  7. I hope your surgery went well this week. No one can tell you how to make these kinds of decisions, all I can say is that Ellie would tell you not to give up just like you did to her. If there are options there, take them. I’m sure you’re sick of advice from people (like me) who know nothing of what it feels like to keep on trying to beat this bastard cancer but you sound like you have people around you that are worth keeping going for and that is priceless. By the way you looked stunning on your wedding day, loved the dress…and the shoes of course. Jess x

    • Thanks, yes she had v good taste in shoes alright. Hard to say really isn’t it? Who knows what she would have said? And whether it would have been the right thing for her, but maybe not for me? I say this having just got out of hospital having had v painful brain surgery (not like the last time!) and been told this morning that they also found two new tumours. So I guess I’m assessing, realistically, how much more fiddling around with my body I can cope with. Three and a half years is a long time and me personally, I have to face facts rather than keep hoping this could be ‘the one’ when I’ve heard that so many times in the past. Anyway, we’ll see xx

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