1) Introduce yourself – Who are you, where are you from and a bit about yourself.
I’m Sarah Kallend and I’m 53. I live in the glorious Derbyshire countryside with my husband Martin and our two woofs Rhubarb and Lyla. And I just so happen to be Auntie to Rachel, the author of this What a Pain blog. I’m a Emotional Health Therapist, which has been pretty helpful given what’s happened over the past couple of years .
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
In August 2017 I was diagnosed with an Epidermoid Brain Tumour. I feel like the first thing I have to say is, “thankfully it’s not cancer” and of course that’s true, and of course I AM so thankful for that. But that phrase, and the need to say it at the outset, is very much a part of the experience of someone with what used to be called a ‘benign’ brain tumour. More of that in a bit… Anyway back to what it is and how it all started.
I’ve had this all of my life: I was born with it, but it took 51 years before I knew anything about it. Epidermoids in the brain are formed in the first few weeks of life when skin cells somehow get trapped on the inside of the newly forming brain. No one knows how common this is; it’s quite possible it happens all the time and that only some survive and then start to grow. It’s rare: less than 1% of brain tumours are this type. To give you an idea, around 15,000 people in the UK are diagnosed with a brain tumour each year and around 80 will be Epidermoids.
An Epidermoid can grow anywhere in the brain but the most common place is between the brain stem and the cerebellum at the base of the skull. That’s where mine was discovered. This type of tumour is slow growing. It is either discovered if someone has a brain scan after an unrelated incident like a concussion, or as part of exploring symptoms that emerge when the tumour grows large enough to start causing trouble.
In terms of symptoms, I have suffered from balance issues since I was a child. In my ’30’s I saw a consultant for extreme vertigo, which was never resolved. Given that the cerebellum controls balance it now makes sense.
After 20 years of living with those symptoms, towards the end of 2016 strange things started to happen. I had a couple incidents of complete memory loss. I’ll say more about memory later on, but my GP took them seriously and made a note in my records. Then in February of 2017 I began experiencing phantom smells. Ironically, given that as part of my work I run an online stop smoking programme, the phantom smell was cigarettes. This went on for days at a time and carried on until I had surgery later in the year. Again my GP made a note. Retrospectively, it’s likely that these smells were ‘auras’ that often precede rogue brain activity like epileptic fits.
So, some strange things, but then in May the pain kicked in. I woke up on May Day and literally couldn’t get out of bed. My upper back was so painful and the whole of my left side, from my face down to my toes, was numb. Eventually I ended up at the local hospital where they diagnosed a slipped disc and sent me home. Instinctively I just knew it wasn’t that and went to to the GP a few days later. I saw a locum who agreed with me, but concluded that it was a reaction to a change in my HRT medication. He didn’t say the phrase ‘mini-stroke’ but that as it turns out, was what he suspected. Again, instinctively I felt that this wasn’t the answer.
After a week or so the pain subsided substantially, but I was left with a permanent feeling of pressure between my shoulder blades. I likened it to an elephant sitting on my back.
The fatigue started at this point too.. I was permanently washed out and my usually ‘Tigger’ spirit seemed to be morphing into an “Eyore’ one. Then the facial pain started. Sharp stabbing pains in my head and left eye that literally took my breath away. The tumour was pressing on my trigeminal nerve. I can appreciate why they call trigeminal neuralgia ‘suicide disease’ as you feel like you simply cannot live with pain at that level of intensity.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time?
With even more symptoms ramping up, and several more incidents of the severe inter scapular pain, I went back to the GP who ordered an MRI. My deteriorating mental state is exemplified by the fact that I didn’t even think to ask what part of me they planned to scan!
When the day came, I was pretty surprised to be locked into a full face mask, clamped to an MRI machine for 40 minutes. Less than a week later I got a letter inviting me to an appointment with a Neuro-surgeon at Sheffield Hallamshire Hospital. That felt pretty real. They don’t invite you to meet with a brain surgeon (and that quickly) unless there is something to say do they? I went into that appointment with my husband Martin, thinking to myself, that best case scenario I had had a mini-stroke…. playing at mid field was Multiple Sclerosis with top place going ‘brain cancer and imminent death’. So I didn’t know what to think when he showed us the MRI and pointed to a white mass the size of an eyeball tucked between my brain stem and the cerebellum.
Thankfully, Epidermoids are easy to diagnose from a scan as they usually show up as bright white as they are not structured like a normal tumour. The living, growing part is actually a sticky sac (great at attaching it’s self to facial nerves) and the mass is protein waste which shows up as white. The consultant explained that it was not cancerous, but that it had grown to the point where it was displacing my brain stem (hence the symptoms). He said he wanted to see another MRI and then we’d meet up again.
Six weeks later we sat in front of him again and in the meantime I had discovered The Epidermoid Brain Tumour Society and had read EVERYTHING it was possible to read about this condition. Which was why I knew he had no idea what he was doing! He launched into a rambling monologue that drifted bizarrely from “this is inoperable, it’s too dangerous “ to “we need to wait till you’re about 70 before we operate as once you start you have to have multiple surgeries” to “I doubt this is causing you any problems anyway”, even calling in at “if you scanned all the people walking down that road, I bet loads of them would have one!”.
Thankfully I’m a pretty confident person and I stood my ground and said that surgery was possible and that I wanted to see someone who had the skills to do it. After an uncomfortable stand off, he agreed to refer me for a second opinion. We left wondering how long that would take, and we didn’t even make it home before the hospital had called back to say could we make an appointment the every next day? Yes of course we could!
The next day we met with Mr Carroll, the first guy’s boss and boy, what a different meeting that was! He explained that he had operated on many Epidermoids, and we discussed trying medication to reduce the symptoms, but my research had suggested that was only likely to be a short term fix and I was clear I didn’t want that.
I had the phrase, “get this thing out of my head” going round and round on a loop in my head. He agreed to ‘debulk’ the tumour: basically leaving the outer sac in place (disturbing it too much runs the risk of it disintegrating and forming multiple new ones) and sucking out the mass, thereby relieving the pressure on my brain stem. He was clear that this beast is well known for growing back much quicker once it’s been disturbed (in 93% of cases!), which made some sense at least about the first consultants comment about waiting for as long as you could to do the first surgery).
I knew from my research that elsewhere in the world, many surgeons operate even if there are no symptoms because once they start, the nerve damage can be permanent even after the pressure is removed. For me it was (and forgive the pun) a ‘no brainer’. By this time my speech was slowing down, every step was literally getting heavier and heavier and normal life had stopped. My sister said recently that it was like watching someone turning off bit by bit and I just knew I had to do everything I could to claw my way back before I lost myself completely. We set a date for surgery six weeks later.
4) Had you heard of your illness/condition/disability before you were diagnosed?
Never, and because it’s so rare, even many Neurosurgeons have never seen one.
5) How did you feel when you were told your diagnosis?
Confused mostly. Not particularly scared which might sound odd, but I have a deep personal faith and almost immediately we were told about the diagnostic I had a ‘picture’ in my head of me waking up in ICU after surgery, so I knew two things: that I would have surgery and that I would survive! The confusion was mostly because I felt a combination of relief that we knew what it was, trepidation about what lay ahead in terms of the surgery and the possibility of repeated surgeries in the future, but also this strange sense that maybe I was making a fuss unnecessarily because after all it wasn’t cancer.
6) What treatment did you have? Were there any problems? Did it help?
The surgery went as well as good brain surgery goes. Mr Carroll reckons he took away 95% of the bulk. I was told that after any kind of brain surgery it can take up to two years for things to stop moving around in your head and a friend I met through The Epidermoid Brain Tumour Society tells me that she was still improving up to 4 years after her surgery, so I am not done yet!
Recovery is long… very long. Most of my symptoms went straightaway – the interscapular pain and pressure, most of the Trigeminal Neuralgia (I can tell when I’m stressed, because it comes back like a shot!) and the phantom smells all went. The post surgery symptoms weren’t great of course and I’m left for now with a brain that sometimes get’s ‘stuck’ or overloaded, but the people closest to me are used to what that’s like and give me great support. I still have some strange things happen sometimes when I transpose numbers, but unless I’m thinking of a new career as an accountant that’s workable ( now I’ve stopped worrying about it!). I have a very lumpy head, complete with metal screws, that’s still quite sore and a super itchy scar that’s still healing, but that’s a small price to pay.
7) Did family/friends/colleagues take it seriously? Did they support you?
My husband and family were and are brilliant. In truth only Martin has been on this journey with me every day and has developed an amazing ‘radar’ for what I’m like at any moment in time. I know I need to develop a better sense of self regulation as I often find that when I’m away from him I can over do it, as he’s not there to act as ‘the brakes’. My close friends and church family were also supportive. One reflection that others with long term conditions may relate to is that some days can feel quiet lonely and extroverts like me need company to thrive. Thank goodness for Social Media!
8) How does your illness/condition/disability affect your life?
I work for myself as an emotional therapist and whilst this no doubt equipped me with additional internal resources for this journey, there has been, and still is, significant financial pressure with being unable to work for a prolonged period of time. Thankfully I am now fit enough to work and am beginning to rebuild my work with clients.
Earlier I mentioned memory issues. I know that as we age (and also go through the menopause ladies), the memory likes to play games. The memory issues I have related to this tumour are not the same as the ‘old lady’ type and I know because I have them too! These are not like a lost memory, more like one never created in the first place. I did have (and now VERY rarely have) incidents where I have absolutely no recollection of a recent conversation or situation. You can prompt me all you like, but it is literally like it did not happen.
A bit bizarrely I can forget that I have forgotten: so when my daughter and her boyfriend went to Cologne on a trip I was repeatedly telling her I wanted to hear all about the trip, when in fact we’d had a long FaceTime call all about it that I’d then repeatedly been told about. Still nothing…though obviously it must be getting better now, as I have remembered that I’d forgotten in order to write this!! It proper messes with your head!
Thankfully my work is very much ‘in the moment ‘ and when needed I just write things down. I try and strike a balance between being sensible about what I take on, what I’m capable of and sufficiently challenging myself. Cognitively it’s a case of ‘use it or lose it’ for all of us and doubly so for me as I’m re-stretching my brain function.
As statistically it’s likely that I’ll be having further surgeries (my surgeon told us, on average he ‘debulks’ Epidermoid patients every 5 years), I feel like I need to enjoy what I have whilst I have it!
Having said that I have made a major change in my lifestyle to give me better odds of being in the 7% that don’t need future surgeries. A year ago, after researching the impact of diet on brain health, we adopted the Ketogenic Diet. It’s an almost zero carbohydrate way of eating that primarily consists of green vegetables, fish, good fats, meat and eggs. Originating in the 1920’s as treatment for children with epilepsy, it’s currently quite a ‘fad’ diet for weight-loss, but has a growing following for people with chronic and acute health issues as it is anti-inflammatory. For myself the rationale is that rogue brain cells use glucose as fuel and so by starving my body of sugar and instead metabolising fat as fuel, I am robbing this Epidermoid of its chance to grow. My 12 month MRI is in March, so we’ll see…
9) What is something you wish people knew about it?
Going back to my need to counter my condition with the “it’s not cancer” comment, I wish people knew that non-cancerous brain tumours are not harmless. Quite aside from debilitating symptoms, brain surgery is risky and the more you have the higher the risks of course.
As part of the international Epidermoid community on Facebook I know that people can be left seriously disabled by this condition and it’s related surgeries and we’ve lost some members too, due to surgical complications. The term ‘benign’ is actually quite offensive to me (the NHS do not use this term any more, but it’s still in common usage). The dictionary medical definition of ‘benign’ is “not harmful in effect’”and more broadly, “kindly or friendly”. Quiet frankly I don’t know whether to laugh, cry or punch someone who calls what’s in my head ‘benign’ or reminds me how grateful I should be that “it’s not cancer”. Yes I get it… and I am grateful, but comments like this makes me feel I am making a fuss over nothing and it also takes me back to that first neurosurgeon and his crass comments.
The other things that I wish people knew: about brain surgery in general is that recovery takes years and not weeks or months and about this Epidermoid beast in particular, is it’s recurrent nature. I have had many other types of surgery (including a hip replacement 3 months ago) and when they’re done, they’re done. This doesn’t feel like that and it’s NOT like that. I don’t spend all day every day thinking about what’s left in my head and what (if anything) might happen in the future, but this condition is a part of today and tomorrow as well. The reality is that I still have a brain tumour… it’s being managed and thank God not causing havoc in my body right now, so why do I feel like people expect me to have put it in the past? But I do…
10) Anything else you’d like to share about it or your experience?
I want to reiterate that for me, knowledge was power… if I’d accepted all the rubbish that first surgeon was spilling out, who knows where I’d be now? I had the confidence to challenge him because I’d done the research. Getting that second opinion was the key to making progress.
To learn more about Sarah or about HeartSpeak please visit her website
sarahkallend.com.
I can personally attest to the effectiveness of HeartSpeak, I had a session with Sarah in 2017 after my disability discrimination court case against my former employer had finished. HeartSpeak helped me heal after a very difficult 18 months. My full review can be seen below.
Sarah’s professional social media:
Facebook: heartspeaker
Instagram: @sarahkallend
