An update, I don’t much feel like writing this one but I also know that there are lots of friends who care and I need to let you know what’s going on.
I had my 6 monthly scan last week in Liverpool. As usual, my 6 monthly scan was over 7 months after the previous which irks me but I don’t think it really matters.
The experience was all round a bit better this time. We left Ivy with a friend (thanks friend!) at 6.30am and Dee and I drove up to Liverpool in mum’s tiny little Peugeot as our comfy car is having MOT muddles. Dee and Ivy both had something quite flu like but Dee soldiered on in her accompaniment duties which I really appreciated. I don’t think it’s a sensible solo activity. The MRI was more pleasant this time for two reasons
- Administrative cock-up meant I got a short scan instead of the usual in depth one so it was only half an hour in the tube instead of 50 minutes.
- I asked if Dee could come in with me, I don’t know why I didn’t ask last time! As we don’t have Ivy with us she might as well. She tried singing to me but I couldn’t actually hear a thing of course. But she could hold onto / stroke my foot which felt really nice. It meant I could spend my half an hour remembering how much I love her instead of how much I fear the results of the scan. Will try that again next time too!
I feel ever so privileged that I get to hear the results on the same day, this is not the norm, many patients go in for a scan one day and wait for an appointment 2,3 or 4 weeks later to get the results. I find that prospect nightmarish, I hate the thought that someone is sitting there knowing exactly what’s going on but I don’t. So we go back to the familiar waiting room. Dee points out that hospitals must be horrid places to work. There’s no natural light at all and a big room of people in varying Shroedinger’s cat states of aliveish or deadish, waiting for news. The consultant appointment is over an hour late, but this is normal so we aren’t surprised. We wait and snack, chat and wait some more.
I like my consultant Mr.H, he’s a good chap. He starts with the usual “How are you?” Which I always find to be a bit of a daft question, I’m here so he can tell me that! I feel great, but that’s not really the point is it? However, I always try and be polite, I really think it’s a good strategy to be nice to the people who are trying to save my life.
Results: There has clearly been some growth over the last 2 years – he has 4 images up on the screen of my last 4 scans and it’s small but definite change. This really shouldn’t be surprising, it was growing pretty rapidly before 95% of it was removed it would be daft to assume the remainder would stop growing now. I’m sad, because I can no longer say “The results are as good as can be hoped for” which has been my stock answer of the last few scans.
Mr H would like to operate, not now, we’ll wait for one more scan to have another look, next scan will definitely be a full 50 minute one. I plan to take my foot stroker with me though which will help. The positive side, if I look hard for one is that I can’t be 100% sure of his motivation. He has a new toy to play with (Intraoperative MRI) and I suspect that a portion (20:80, 50:50 or 80:20?!) is that he wants to take out more of the original tumour that was missed first time around. I’m not left feeling entirely certain that the proposed surgery has much to do with new growth or just that he wants to tidy up /improve on the last one and the new growth is the perfect excuse.
So it’s not terrible news really. This is not the feared “beginning of the end” moment. I’m still terrified that one day I’ll have a scan and we’ll hear about progression to Grade3 or Grade4 but I try not to think about that even though it’s the norm. I’m still hoping I’m going to be lucky one.
So what next? Wait for the next scan which is due in 6 months but expected in 7, prepare my list of questions and expect surgery in autumn / winter. It’s better than the other options – I’m resistant to chemotherapy as I’ve heard horrid things, radiotherapy to the brain is a terrible idea unless it’s totally necessary as it has a horrid side effect of giving the patient dementia, killing off plenty of health cells on the path the the tumour. I recovered from the last surgery in 4 weeks so doesn’t feel too bad, but Mr H says even though it was OK last time it could be awful 2nd time. I try to remain optimistic. Hoping we can schedule it for September/October time so I can watch the Rugby world cup during my recuperation.
The Photo: This made me cry (again). Ivy and Dee were snuggled up under a blanket a day or two after scan day. In the snug keeping warm, resting and watching TV whilst they’re recovering from flu. I wondered in and overhear Ivy explaining to Dee “Don’t worry Mama, I’ll look after you. I promise”. Sounds fairly harmless but didn’t feel it. I know they can, and will look after each other, we have a house full of love. The love will definitely outlive me and that’s as good as it can be. It breaks my heart though, to think that I won’t be there to look after them, I really want to be there and I don’t know if I will*. The statistics are against me, so we are left with hope and optimism and sometimes that’s pretty hard to rely on. I know that love is a bottomless well, it can be given and given and the more you give the more there is. Unfortunately, it seems that grief too is bottomless, I can’t cry it away – the more I feel the more there is. Grief also rears it’s ugly head in the most joyful of moments which is really fucking annoying because it sucks the joy away from me before I get a chance to feel fully joyful. Don’t worry about me though, I have a therapy appointment tomorrow that’ll probably help get a handle of this stuff. I’m doing well, as well as can be expected.
*Important don’t even think about uttering the line “Oh none of us know if we’ll be here, any one of us could be hit by a bus tomorrow”. Fuckidy fuckidy off with the bus shit.
“Two-Cancer Amy” that’s what they’ll call me…
A quick start with some good news on the Glioma/Astrocytoma (brain cancer). Dee and I headed up the road to Liverpool in July for a scan. It’s no fun at all, I got the least nice MRI scanner again which is very small and miserable. I did take my pyjamas this time though so at least I wasn’t cold. Cut to the important bit… The Surgeon had a quick look at the scans and says he can see no change so that’s as a good as I can reasonably hope for. Next scan will be in February. They’re meant to be every 6 months but I think there might be some classic NHS overstretched issues as they’re coming through every 7.5 months. I’m not sure it matters but it’s a little disconcerting.
Now onto some less good but not all bad news… This week I was diagnosed with a Melanoma (skin cancer). It’s a bit of a tough to write as, in a slightly upsideowny world, it sounds far worse to other people than it does to me. So I’m sorry if that sounds terrible and has come as a shock. I’ll reassure you…
- It’s not that bad… I have a grade 1a Melanoma. I think it’s quite funny that yet again I can honestly say… If you had to have a skin cancer, you wouldn’t want a Melanoma (Melanoma is the deadly one) buuuuut… if you had to have a Melanoma then 1a is really the very best one to have and
- Unlike my Glioma, this melanoma is actually really unlikely to kill me, melanoma 1a does kill people but only 2% of them – odds I’m reasonably comfortable with
- This presents me with some exciting and interesting opportunities. It’s all about the genetics…. my understanding of genetics stuff is still poor so I’m unlikely to explain it well but here goes:
- MY DNA might be interesting: What’s wrong with me? It seems reasonably likely that I have some freaky gene that has made me susceptible to both. This would be interesting though not terribly useful. I may be able to get some genetic testing, the only upside of this is that if the gene is hereditary then we can check close family members and modify our behaviour slightly to adapt to this risk (e.g. more sun cream, checking skin regularly, being aware of brain tumour risk) and catch any cancers a little earlier. There is a gene identified which predisposes some people to Glioma & Melanoma – https://www.omim.org/entry/155755 I think it’s actually unlikely as we’re not aware of any other family members having these cancers but these things have to start somewhere I suppose. I may have this but I could just be unlucky. I haven’t done stats, but having 2 primary cancers is really bloody unlucky, especially when one of them is as rare as the astrocytoma
- The TUMOUR DNA is as separate thing. Something happened to some of my cells and their DNA went haywire and made cancer. I think that’s an explanation of cancer in one sentence. Stupid cancer cells. The particular DNA mutation that made the cancer or is causing the cancer to grow or is stopping the cancer cells from dying is interesting. Lots of the fancy new drugs target specific DNA mutations in specific tumours. I know that my Glioma has a IDH1 mutation. As yet, drugs targeting the IDH1 mutation haven’t been effective but work is ongoing. As discussed previously, the genetic testing of my astrocytoma was definitely on the budget end – they only looked for 2 things IDH (which I do have mutated) and 1p19q (which I don’t have mutated).
- As yet, I don’t know anything about the DNA of my Melanoma. However, there is an opportunity. It maybe that I can access some treatment on the more “experimental” end of the spectrum. In particular I’m trying to get the Melanoma tested for BRAF markers as there are some effective drugs targeting this. If the Melanoma has a BRAF thingy then maybe my Glioma has one (a minority of Gliomas do) in which case a BRAF inhibitor (which is signed-off for Melanoma but only had early trials with mixed results on Glioma) might be accessible to me. Probably a long shot but it’s worth looking into.
- My initial research is throwing up a lot of Melanoma drugs which are being trialled on Glioma so one drug hits 2 cancers feels like a good way to go. Although from a medical perspective chemotherapy is not needed for either in isolation I’m yet to have a talk with an oncologist who’d like to look at my adjusted risk profile. I’m fishing for this and the Dermatology team are taking my notes back to another MDT meeting (MDT meeting is their “cancer chat” sessions, it seems most medics hold these weekly) with my request for someone to look at the 2 together. I think that modern medics are meant to be aware that they are to “treat the patient not the illness” but I’m not quite sure that the reality of this has found its’ way into practice just yet and I don’t know what happens to people with two primary cancers (neither do any of the medical professionals I’ve spoken to!).
I haven’t yet queried the full “Scientific and Medical Advisory Board”(SMAB). I hope you’re reading. Any ideas please email me!? And even if you don’t think you’re on the SMAB and have an idea let me know, there’s always space for new members!
So, what’s next? I have some more surgery on the skin thing in a couple of weeks, they’re taking another 1cm margin (wide & deep) around where the melanoma was. This won’t be too bad but I’m supposed to refrain from doing much with my body for 2 weeks which is quite a long time if they’re expecting me not to lift Ivy up. I’ll try using the other side. We’ll see how that goes! I’m also waiting to hear back about some genetic testing and I’m doing a bit of work (ie asking clever people questions) to see what I can or what I should be thinking about regarding genetics of the melanoma and the glioma.
In the meantime, we’ve had lots of fun here at Gwalia. This week I’ve mostly been playing with a digger. It’s the perfect thing – fun and useful!
ps. great news on the fundraising effort, we’re now on a grand total of £32,486.49 thanks to some amazing stuff that my lovely friends have been up to, you can see the latest total here. I’ve been told the funding is going to this project which is highly relevant. If Dr Brennan can pull this off and work out why, and hopefully find a way of stopping the progression of my cancer to the really nasty one (“malignant transformation”) then that’s actually my best hope by some distance. Timescales might be a bit iffy for me but fingers crossed!
March 14th. I’m not going to forget this date. A year ago from right now, I was recovering from my cranitomy.* Urgh, that was a rough day. Not as rough as you might imagine but fairly rough nevertheless.
In the news today, we learned that Stephen Hawking has died. He and I vague crossing of paths many years ago. My second year halls overlooked the new Maths department and I used to peer out the window, very occasionally getting a glimpse of Cambridge’s most famous resident. Stephen Hawking is an inspiration if ever there was one. Age of 21, doctors expected him to live for only two more years. But Hawking had a form of the disease that progressed more slowly than usual. So the young Hawking and I have this one grave thing in common, facing a miserably short life-expectancy. I’m hoping to the Hawking of Low Grade Glioma, that I have the odd one that progresses very slowly. 76 is a good age. I’d be happy with that.
#”Those who live in the shadow of death are often those who live most” says Guardian’s Obituary. It’s a question that some of my friends have alluded to in conversation. I think it’s something people want to hear, there must be an upside, surely now I live life in the moment, to the fullest, appreciating every second with a new zest for life.
Harumph. Unfortunately, that doesn’t work like that for me. I would mostly like to forget all about it. Dwelling on the dooming, looming death doesn’t make me “live more” it just makes me live more miserably. Of course I did have a good old think about it and can honestly say that I have the most wonderful life with the most wonderful people in it. I love it, it’s amazing. That just makes it more sad though, not happier.
Right on with it… I sat down today to write a happy, positive post. 1 year on, it’s my “Craniversary”. This is a great day for 2 big reasons.
1) I survived the first year!
2) I’m allowed to drive again
Surviving the first year was always fairly likely, worthy of a minor celebration nevertheless. The driving thing is really exciting. Not being allowed to drive has been annoying, frustrating, debilitating and miserable. I’ve been really lucky, my friends and family have made up for it but driving me places and coming to visit but I still hated the lack of independence. Long days cooped up inside with the baby, attempting and failing to get jobs done whilst simultaneously failing to be a good parent.
So one year on and some other things to celebrate…. We (you!) raised over £23,000 toward brain tumour research. That’s amazing. It’s made me feel very loved and supported. Also, you never know, it might work. That’s the plan anyway! Thank you. Thanks for kind words and visits and general love. Give me a shout if you haven’t in a while. I like people, that’s why I don’t want to leave!
* It’s also two of my oldest friend’s anniversary, congratulations guys! The day after the wedding, 9 years ago I was staying over with another friend when I first met Dee (virtually, but that still counts). So clearly a special day for many reasons!
Hi! I’m so sorry I forgot to update you. In summary, I’m feeling pretty good. I’m full of health and beans and enthusiasm.
I have to start with an apology. Firstly, maybe I should never really have written THIS. “So, How are you?” ask very few people since I publicly took the piss out of you for asking this question. Serves me right. Don’t worry, I know you care really. Which means the delay in getting this update out is all the meaner of me.
I have been writing, I just didn’t finish and publish anything. That means we go from no posts in almost a year to all of this writing at once. I’m going to colour code, Green for the snotty ones you might need tissues for. Skip the links and scroll down if you just want to hear how I am now.
A quick summary….
- I recovered really well from the surgery. I wrote about it. I didn’t finish it so I didn’t post it. Shoddy if me. I’ve filled in some of the gaps and left some of the gaps in. Read it here
- I had a scan in June which went reasonably well. I wrote about it but didn’t send it. That wasn’t nice of me, I’m sorry.
- I got busy at home and plastered Ivy’s bedroom wall. I got very sad and wrote this. This is really what stopped me publishing the writing. I’m not sure anyone wants to read something that sad. You’re welcome 😉
- Then I had a moment of being less busy and got even more sad and wrote this. I didn’t know how or if to share it. I stopped because Dee does my proof reading and I didn’t want her to read it. You might want to skip that one too.
- So I phoned a therapist. She was on holiday. So I phoned another. She was also on holiday. It seems that the end of August is a bad time to get really sad. That’s when the therapists go on holiday. So I waited and went in September. This lead me to write this. Yup, it’s another sad one.
- And Life Expectancy: to floss or not to floss?
- I wrote about preparing for scans and Scanxiety.
- I had another Scan on the 4th of January….
EGG CHECK 2
I got the old MRI machine again, so no fancy mirror or music. It wasn’t fun, I lay almost naked in the freezing cold in and MRI scanner for an hour and for the first time felt really resentful and miserable. The machines, and some people, get hot in the scanner so they make you hand your clothes in and blast freezing cold air down the tube. Next time I’m allowed to take my pyjamas to wear.
When my first ever MRI on my knee many years ago there was music. Possibly because I was at a private hospital, nice. The benefit of the music is that it makes it possible to count the songs and, say each song lasts about 3 minutes, gives a sense of time. Without a sense of time, the cold and the incredible urge to wiggle became almost unbearable. There’s a panic button but I resist pressing it as I imagine it would only make the whole thing last even longer and also, I’m a big brave girl and I can handle this. Yes I am. I am. I am. Just.
Additionally, I’m not fond of needles and in particular not fond of cannulas (that’s when they put a big needle in your arm and just leave it there). This adds to my discomfort. Still, I’m a big brave girl. Yes I am. Once, in another hospital on a different day I had a cannula go wrong and the drip missed the vein and just started filling up my arm under the skin. A bubble the size of a golf ball grew up and up. It didn’t help my anti-canula disposition. That was very sore. Then I had a baby, which frankly redefines the scale on pain. It’s not unusual in hospitals to give a “pain score”, they say “how is the pain on a scale of 1 to 10”. Getting the baby out is useful because I definitely know where 10 is. Brain surgery? Didn’t really get past a 3 or 4 so that’s good. Canula gone wrong? Probably a 5. I could list my experiences which reached 8 & 9 but that’s not necessary. So, rest assured mothers, if you’ve had a baby and needed significant stitching after I can, with some authority reassure you, that’s somewhere up there in the region of a 10.
To get to the interesting stuff. Left Gwalia at 7am, Mum, Corinna and Janet looked after Ivy. Ivy was sick, unusually, on someone else. I had the scan, it wasn’t nice. Had a long wait then a brief conversation with Mr. H, good news, “no change”. This is as good as can reasonably be expected. A small part of me harbours a fantasy that he’ll say “Oh my gosh… It’s gone!” but this is very unlikely so in conclusion, yup “good news”. Next scan is in July. I promise to write. Really, I will. I made a commitment now so I must!
So the next scan comes in January. Again, with the help of the therapist I began to understand the “Scanxiety” this brings. It’s not that I’m massively worried, I’m pretty sure it won’t be a bad one this time. If we boil down all the scanning, the waiting and the chatting the result will either be “Progression” or “Stable”. It’s like getting down on the blocks and waiting for someone to fire the starting gun. The starting gun on the last bit of my life. Ready…. Set….
“Stable”. It’s a false start. Come back again in 6 months. Get down on the starting blocks. Wait… hold it there, hold… hold….
“Progression”. BANG. Let’s go. The countdown has begun. Now we know not just what the problem is but how bad and how long it might be. Read HERE to understand what this means in my head.
Will it be today? Probably not, but I have to have a few hours waiting around in the hospital to check. On your marks… Set… Ready….
Life Expectancy and Flossing
I avoided getting into this previously, it’s a tough subject matter to tackle. In the landscape of incurable brain cancers my life expectancy is really pretty good. Yes, it’s that “lucky” thing again. I’ve been trying to think of a way of explaining it. I can’t stand the way someone might say “Doctor said she’s got 2 years to live”. This sentence only makes sense if the doctor has a gun and/or has no understanding of statistics (or most likely, doctor has been miss-quoted). I think my doctor probably doesn’t have a gun and does have some understanding of statistics. I tried to persuade him to draw me a life expectancy curve but he wouldn’t. I think he knows roughly what it looks like but definitely doesn’t want to put pen to paper. I have to read a bit into his words and also, of course, every life expectancy statistic for grade 2 astrocytoma , IDH1 mutated that google can find for me. I’ve quit googling this now but it was a hard habit to stop. I could draw you a curve as I see it, but I won’t either. I’ve decided the best way to communicate where things are is like this.
I’m 36 now. The chances of me dying before I’m 40 are reasonably low. Much, much higher than most other 36 year olds but I’ll be quite surprised and extremely disappointed if I don’t make 40.
The chances of my celebrating my 50th are pretty low. I hope that this will change as a magic bullet cure or even a reasonable life-extending treatment is developed and made available. As things stand though, presuming no change on the science front reaching 50 would be an amazing result. Yup, still sad about that. Then the crying comes again. How old will Ivy be when I’m 50? How old will mum be?
TO FLOSS OR NOT TO FLOSS
The biggest question of them all? At which point, given a shitty life-expectancy should you give up flossing? I think many people would agree that flossing is a bit dull and not a lot of fun. What sort of timescales are involved do you think? I think if I was going to die next month I’d stop flossing. Next year? Maybe. 5 years? Definitely keep flossing.
What about other things though? At which point to I give up kale mountains and just eat pudding? This is like a litmus test for life expectancy optimism. For now, I’m still flossing and eating kale. What about some of the bigger life decisions? Business commitments? Building ideas? Big projects? The next baby I always thought I’d have? How optimistic am I? What sort of timescales do we base these big and small life decisions on? I’m not feeling so lucky now. How nice it would be to be in the privileged situation where this doesn’t even come up as a question. I don’t think many people discuss life-expectancy whilst planning these things. Maybe I need a support network of people in their 80s or 90s go over this with, I wonder if they discuss life-expectancy when they’re planning things. I don’t think I am able to describe the pain in this well enough to expect empathy, it’s the aspect of grief that draws out my most angry side. It’s not fair. I want to plan things. I joined a Brain Tumour support group on Facebook. The people on there keep dying. I left.
warning: snotty one
I was sad. I went to see a psychotherapist. I’ve nearly always been pretty pleased with my good mental health, especially now as it becomes clear that my physical side is so very flawed. Over the summer, I felt very, very sad. I think my sadness and emotional trauma is pretty much reasonable and proportional given to the experience I’ve been through and I decided a little help might be in order. I learnt a lot and it’s helped me to have more positive relationships with my nearest and dearests. I’d recommend it. A few of the things I learned
- I’m not exactly scared of dying. The dying bit isn’t the thing that worries me. It’s the responsibility I feel toward my family and Gwalia. It’s my job to look after them and I struggle to shake the pressure of that responsibility.
- There’s a coin. It has two sides. That’s what they have.
Initially I saw the positives. Of course we’ve talked about it at home, but I haven’t spent a that much time preparing for death or speaking in detail about the dying with my family. “I’m going to get lots of notice” I explained to the therapist. The expected progression would mean that once the start gun is fired the decline is sharp but I’ll still get 12 or even 24 months notice of my death. I proper countdown. I can make plans then. It’ll be fine.
The flip-side is that’s actually quite a slow decline. I don’t know a huge amount about the brain cancer dying business and I tried not to read or think about it too much. So I didn’t read about it. It didn’t stop me thinking though. Because the cancer can come back in any part of my brain I can’t tell which bit of my brain will fail first. I suspect the sight. The tumour is on my optic tract after all so that seems like the most likely place. I ponder what it might be like to be blind. My therapist suggested it might not be that bad, if you loose one sense the others become more sensitive and for some people that can be a positive experience. This makes sense, I’m pretty good at seeing the positives. Except, you might remember, I already have a pretty hearing deficit. Arse. If only the tumour was on my auditory nerves, I’d rather loose my hearing totally than be severely deficient in both. It’s a fun game, you should try it. I’ll call it “Deaf or Blind?” What’s your favourite sense?
Now whenever I see people with a big brain injury problem I wonder if that might be me. Will I lose control of my limbs or my mind? Which limbs might it be? What would that be like? What if it’s my bladder? Bowels? Mouth and swallowing tools? Maybe I’ll be one of those people with the permanent shakes or jerks. But what will happen if I can’t swallow? I’ll need a feeding tube. That won’t be nice. The thoughts go around and around, I can always think of a worse bit of body to loose then I add a bit of detail into the previous possibilities and that one begins to seem like the worst one. But what about if I can’t move at all? Do you think that would hurt? Where will it hurt? Do painkillers work on that sort of thing?
Or, will it be my mind, my intelligence or my ability to communicate. Will I lose all my words? My ability to speak or my ability to understand? My ability to recognise things or people, speach or sounds. Or all of these things. What if it hits my emotional senses and I become violent or aggressive. Or suicidal. Shall I go to dignitas or jump off a cliff? I read that the palliative care in The Netherlands is quite nice. But we’re coming out of the EU so maybe that’s off the table anyway.
I can keep this network of thought trains going indefinitely. It’s sort of boring to go on and on but also fascinating and horribly addictive. This is the joy of brains and brain cancer. Brains are really special, they have a role in every aspect of our minds and bodies. Not for the first time, I find myself wishing I had foot cancer. Cancer, you can have my foot. Just take it. Anything but my brain.
Each fantasy disability comes with a question I’m not able to avoid. What sort of burden will I be? How will they manage, firstly without my help to do the work about the place but with the additional effort it might take to look after me. It’s a double whammy and I don’t like it.
warning snotty one
Eggshit, brexshit, it’s all shit. Also, I clearly can’t stay away from these puns. Must be the brain injury (and/or my comedy genius is unstoppable)
A while ago, my sister mentioned that it might be a bit unfair to miss out all the miserable stuff in my communications. She’s right, it’s not OK to suggest that I can handle all of this in a ‘hunky-dory-it’s quite funny really’ way. What if someone else gets really ill and can’t find the funny side? Hang on a sec…. that’s me now. I’m sad and dying and it’s not fucking funny.
Then after the June appointment life began adjusting back to normal and I wanted to forget the brain stuff. I couldn’t forget about it but I wanted to. The bloody egg, despite its significant debulking, just comes popping up into my thoughts over and over again. Just when I think I’m getting on with things up it bubbles. “You do remember you’re dying don’t you?” it says. Fuck. I forgot there for a while. It was nice, I was normal me again but then bang “I think you’ve had a couple of hours / days too long. Don’t relax. You’re dying. You need to worry about it, cry about it, contemplate it. What’s wrong with you? You couldn’t possibly have forgotten”. So it comes; I worry, cry, research, build up some hope. I manage to stop contemplating death for a while and start enjoying life. Then, it starts again… “You DO KNOW you’re dying right?!”. AAAAAAAAAAAAAAARGHGH. We’re all bloody dying, why is it just me that has to think about it all the time?
Do I cry at night when there’s no one there to hear? Yup, as quietly as I can so as not to wake up Dee and Ivy. Am I shit-scared of dying? Yup. Do I sometimes cry so hard that snot & tears pour out of my nose, dribble down my chin and soggying up any nearby sleeve, collar or random bit of fabric? Yup. How did that snot get on my glasses? Dunno, it just seems to get everywhere. Sometimes I have to turn the pillow over, not for the cool clean side but just for the side that’s not soaked with snot and tears. Imagine your own funeral much? I can’t help it. Whenever the topic of death comes up, my mind goes instantly to thinking about my own death. Imagine your future but without you in it? That’s not fun.
warning: snotty one
2016. The year I gave birth to Ivy, my first, my beautiful, my perfect little baby. That’s what 2016 was meant to be about. Instead, 2016 became the year they found a Brain Tumour.
My daughter Ivy is 11 months old now. Last week I finished plastering her room. At last, she’s nearly ready to move out of our room so some last minute DIY was in order. Stood in her room, finishing off the plaster and in a hidden corner, I commit an unusual act of plaster-vandalism. I press my hand firmly into the wall leaving a shallow imprint (the plaster isn’t soft enough!). In it I scratch the word “Mami”. Underneath, I gouge out a little heart with “Ivy” written it, much like you might have seen scrawled on a school desk or toilet door. I’m crying now, I stand back and imagine my now grown-up daughter finding the hand print in the back of the cupboard and placing her had in it. She finds it a good fit then looks again and sees the heart. “Mami really loved me” she says to herself.
Why the tears? I’m frightened I won’t be here to see her grow up and that she won’t know me. Why am I frightened? I’m frightened because I’m scared I’ll die and I won’t be there to mother her. Little Ivy’s need their Mami’s, that’s meant to be my job.
I went for my 3-month scan in June. Another hour in the MRI machine and another big shot of gadolinium juice in the arm. I like to think it’s a bit like the glow-in-the-dark green stuff from the Simpson’s but it’s probably not that fun. Interestingly (*too strong a word?), gadolinium build up from repeat contrast-MRIs is a bit of a concern in the brain tumour community but I suspect that’s the least of my worries right now.
I have been especially lucky (once again!) that Mr H is trialling a new set-up for some of his patients, especially those of us travelling a distance. I was able to get an MRI scan in the morning then my review with him in the afternoon. Most patients have a scan one week then the review around two weeks later, this not only entails two boring trips to Liverpool but also waiting around anxiously for two weeks knowing that somebody knows how I’m doing, but it’s not me.
Good news first, they let me in the fancy scanner this time! I think I got lucky. There was music of the not too bad variety and a little periscope to see out. It’s almost as if someone decided to put themselves in the position of the patient when designing the machine and work out how to make it a bit nicer. There wasn’t much to see with the little mirror but it certainly made it feel a little less claustrophobic. I’m debating with myself whether I can request this machine next time by claiming distress and claustrophobia but I’m ethically torn – it was much nicer but I can cope perfectly well in the old one and wouldn’t want to bump and genuinely terrified person down to the scarier scanner. Am I selfish or am I moral? Find out next time…
The scan results were as good as it was likely to be. There appeared to be very little change in the residual tumour so that’s good. After the scan I’d remembered that the first scan result is quite an important prognostic factor, it’s the first chance there is to accurately measure the growth rate. Mr H discussed some weird glowy bits on the scan that they couldn’t work out. Seemingly it looked a bit cancerous but it was entirely symmetrical on both sides of my brain, essentially too perfect. So either I have an almost too perfect lumpy bumpy cancer growth or there’s something else going on. Fortunately, the radiologist, the surgeon and all the people in the MDT (multi-disciplinary-team) meeting all agreed that it almost certainly wasn’t anything sinister. Also, I’m quite excited as my key SMAB member and radiologist is coming to visit so I’m going to quiz her on see if she might speculate on my glowing brain. I’ll let you know how it goes!