Living through and learning from a brain tumour experience

Neil Bindemann PhD, Executive Director, Primary care and Community Neurology Society

 

“Would you mind taking a seat, the doctors are examining your scans. They’d like to come and talk to you.” Well that was it! I was wrapped in a blanket and I’ve never had so much sugar in a cup of tea.

I found myself in a room with 3 surgeons. “We’ve found a mass…. you have dangerous hydrocephalus… we need to admit you, so a bed is being arranged!” There was I thinking I’d just have the tests and go home and see my local neurologist for a follow up. You see, because of my neuroscience background and several years running the Primary care and Community Neurology Society, I thought I might have MS. Mind you a brain tumour had crossed my mind.

Phoning my wife to tell her “I’m not coming home” was rather tricky, to say the least! But before I got chance, she said ‘can I call you back, I’m just getting the children from school”. To describe my thoughts at that point, would need a few *****s!

The ‘Bindepeople’ on holiday on Dune du Pilat, France 2018. (In height order at the time!!): Neil, daughter Grace, wife Eleanor and son Arthur

Friday, March the 13th2015, (Comic Relief Day as it happened!) is for ever etched in my memory. The day of my operation. I know that this date can raise the stress levels for some, and I have no doubt that on that occasion it did for my wife. The operation went well; the hydrocephalus was no longer and although the surgeon couldn’t remove the mass, he debulked it, removing sufficient for a biopsy and fitted something called a ‘Rickham reservoir’ – a dome-shaped device placed under the scalp with a plastic tube that goes into the third ventricle of the brain; the purpose being to minimise any future intracranial pressure.

Fast forward a week; I had recovered from the surgery, passing the occupational therapy and physiotherapy tests, and back home. But a big question mark hung over my future until my phone rang. It was just as we were leaving the restaurant where we’d celebrated our wedding anniversary. It was my surgeon; the news was encouraging; the mass was a slow growing grade 2 pineocytoma. I needn’t return for further surgery and would have an MRI scan in 3 months. What a relief!

As I live through my brain tumour experience, my first learning point concerns the importance of preparing people for when they leave the security of the high level of care received from a specialist hospital. No matter what type of brain tumour, and in fact, whatever diagnosis, the sense of ‘isolation’ once back home was not insignificant, and I know I’m not alone in such a feeling. Therefore, I’d suggest it would help if a staff member explained, either to a family member or the person themselves, that it’s not unusual to experience feelings relating to isolation after a stay in hospital, which may be in part due to them becoming attuned to the relative safety of the hospital environment. Such an explanation may help people cope better. Plus, it offers an opportunity for them to consider ways, prior to returning home, to help adapt.  I’m sure ideas offered by the hospital staff would be welcomed!

When I got home, the impairment of my immediate recall/short term memory became more apparent. Luckily, with my neurosciences background I rationalised – ‘Given the need for the surgeon to tease apart regions of my brain associated with memory, the neurons would reconnect, with practice and time!’

I still remember that ‘halleluiah’ moment when I was rewarded for such thoughts. I had been out in the garden, and I went to make a cup of coffee. ‘But where was my mug? I had it in the garden’.  I then recalled being in the shed, of all places. And yippee, there it was, on the shelf! I can’t tell you how much that lifted my spirits.

I had spent months since the surgery fretting about losing my house keys and my wallet. Every time I left the house, I’d constantly checked my pockets, rather urgently. Virtually every time visiting a shop or café or on a train to return home I’d think, ‘Have I got my wallet?’ and then urgently check my pockets; doing the same for my house keys. But I still kept practicing my immediate recall, making mental notes of actions I had taken, hoping to get those neurons rapidly reconnected! So, you see, it was a very significant moment for me, remembering that I’d left an object in a rather obscure place. I believe my level of ‘mental fitness’, which I now talk on, contributed.

My second learning point is – if it is known that the neurosurgery will impair any aspect of a person’s memory (even just for a short time,) consequently interfering with everyday activities (and thus impairing quality of life), they and their partner and/or family need the necessary preparation and support from the healthcare services.

But, perhaps my key learning point comes from the most eye-opening experience, which in my opinion illustrates why we need primary and community care health services to be far more engaged in neuro-oncology care. It would require them to take such a simple step and make a dramatic difference to so many patients’ and family’s lives, not to mention the potential cost savings from supporting and building a person’s mental fitness!!

A few days had gone by since returning home; I had started back to work – I held the belief (and still do), that my rehabilitation would accelerate by working. That stems, in part, from my father’s attitude of what I term ‘living through illness’, plus his exceptional psychological skills and desire to support people’s quality of life. Mind you, I had a need to work, as I am self-employed! One morning, during those early weeks, a letter arrived. When I realised it was from Kings College Hospital my heart rate suddenly accelerated. I needn’t have worried. It was a copy of the discharge letter sent to my GP. I read it and didn’t think any more of it.

But as I continued to work through my memory deficit, the quality of life impact of my driver’s licence being revoked and the accompanying loss of independence, to say nothing of my rather uncertain future, that discharge letter started to irk me. “Why had nobody from the healthcare ‘professional’ team been in touch?”. The answer to that question, which stunned me, comes in just a moment.

First, getting to my third learning point – when a person and their family has experienced a trauma (remember they come in all shapes and sizes!), which has been clearly documented in the discharge letter,  please, please, please can ‘the powers that be’ make sure someone picks up the phone and calls the patient and family. It doesn’t have to be the GP, it could simply be a caring receptionist, who calls to say something like ‘Hello Mr/Mrs/Ms xxxx, I see you’ve had a rather difficult time these past few weeks, so we just wanted to give you a call and make sure you’re OK. If you do need to talk then we’re here to help’.

If companies can set up automated telephone systems to try and trap you into enquiring about Payment Protection Insurance, surely it shouldn’t be beyond wit of man for the NHS to place a human being at the end of a telephone call!!

Now, if you are a health service manager or a health professional with a management role reading this article, then I hope what I am about to relay will encourage you to look at whether you run a healthcare service or just a healthcare system. I say system, because that is what I believe many people are increasingly experiencing. If it was a ‘service’ then the NHS would ensure ‘care’ didn’t get disconnected from the ‘healthcare’, as it continues to find ways to create efficient ‘processing’.

Why do I say that, you may ask? Well, once my GP had very kindly apologised for what I will say was an oversight, in not getting in touch once he received my discharge letter, he then went to lengths to explain that because I wasn’t diagnosed with cancer, such a bowel cancer it wasn’t deemed necessary for me to be contacted. In other words, I didn’t fit the system!!

My jaw felt like it dropped to the ground at that moment! I was so stunned that I didn’t respond. I left the surgery thinking, what about everything I had experienced as a result of visiting the hospital for some tests:

The sudden news from the MRI result that I had a growth in my brain,

The dangerous situation I was in and the urgent need for a bed and neurosurgery,

Having to phone my wife to tell her that I was not coming home,

Then the subsequent reduction in physical functioning,

An uncertain future for me, my wife and children,

The cognitive problems.

i.e. the significant TRAUMA!

Thankfully, I believe it was the positive thought that had entered my head (during 2015/2016, recovering back home and coping with the significant quality of life impact of losing my driver’s licence) that, as I had managed to come through everything, relatively unscathed, I must be reasonably ‘mentally fit’. I also hold the belief that I’m fortunate in having some knowledge of the neurosciences, plus a father who gave me an interest in psychology and quality of life, which all contributed to my mental fitness.

In fact, it was while chatting with my father in the early part of 2019, that it suddenly dawned on me why patients’ quality of life was central to his clinical practice and meant so much. It was his experience of having lived ‘through’ a couple of life-threatening illnesses in his younger days that gave him a true appreciation of the value of life and therefore, what it meant to maintain ‘quality’ in a person’s life, especially when they and their family were coping with cancer treatment.

I’ve used and emphasised the word ‘through’ several time now and that is because I believe it offers a very different and positive approach to coping with an illness, compared to ‘with’. I shall try and illustrate this with a recent experience with a friend.

It was during February of 2019, my friend heard me speak briefly at a fundraising concert for the Silas Pullen Fund (a local Brain Tumour Charity). He wrote to me to explain that their daughter’s husband had just been told that a tumour had come back, despite the major operation to remove it from deep behind his nose, close to the optic nerve and the radiotherapy after the surgery. He’d even picked up strength and was about to go back to work, and it was at the sign off consultation they stopped him in his tracks.

They were awaiting more tests and consultations. He said his daughter and granddaughters (13&11) were coping well but looking for truths and answers. Palliative chemo was mentioned but his daughter, who he mentioned has a science degree, would have none of it. She wants a cure or at least something to slow it down.

Now, I wish to state that I am not a qualified psychologist, but I do believe I have gained, what I would term some ‘life’ psychology skills, plus for what it’s worth I do have a neuro-immunology background. My response to a rather difficult situation was:

“I feel it is about feeding ‘hope’. And I would say that anything that keeps stress down and supports the body’s immune system and also encourages a strong ‘belief’ that the family will live ‘through’ the cancer, will make a difference. It is about building everyone’s spirit. I believe the children needed to be integral to all of this. Perhaps if I put it another way, I know my father is going to die and I know that one day so am I. When my father dies, I will be living through ‘death’ and ‘bereavement’. My children will have to do the same when it happens to me. But the focus should always be on living, until that time comes. If we do that, then who knows how long the person will live.” I’ve since had time to think about this some more. Putting it another way – living ‘through’ an illness still acknowledges the illness, but it’s about using the experience to your advantage, and perhaps then helping others, if that is feasible. If you are living ‘with’, I believe it creates ‘baggage’ that will hold a person back. If you imagine travelling ‘through’ a tunnel, there is always ‘light at the end of tunnel’. If you start doing this with patients, I am convinced it will make a significant difference to them and you.

This brings me to another lesson that I wish to relay. It is something that in my opinion, should be second nature to health professionals and probably is, for the majority, but clearly not for some.

I was reading the wonderful book, A Mighty Boy, by the mother of Silas Pullen, Sarah. It is quite simply, an education, a must read, especially if you believe that you never stop learning through life.

When Silas had the misfortune to be diagnosed with a very aggressive brain tumour, a glioblastoma metaforme, grade 4, Sarah and her husband Ben were told, and I quote:

‘There’s nothing we can do. There’s no successful treatment for this type of tumour’….‘I’m sorry but your son is going to die. He has 12-18 months with treatment and only a few without’

Of course, it is vitally important to set realistic expectations, but that must be balanced with giving patients and families/parents a sense of hope, as it contributes to the idea of keeping ‘living’ at the forefront of our minds and it doesn’t place ‘death’ there. When that is done, it is amazing what can be achieved, even when a person may have the same tumour type. I am referring to the account of Dr David Servan-Schreiber, who’s book, ‘Anticancer – A new way of life’, provides an account of how he rose to the challenge of brain tumour – thought to be a glioblastoma, which was discovered during an experiment on himself. Dr Servan-Schreiber lived for a further 19 years.

Having had the experience that I have had, I truly believe that minimising the trauma of a life-threatening/shortening diagnosis and feeding peoples’ minds with hope, must be at the forefront of care. I believe it will build mental fitness. Not only that, if health professionals go into a consultation with patients and or family members with a plan to help minimise the trauma, while ensuring they are setting realistic expectations, it may even help them cope better. The stress that can arise from knowing the results hours/days before the patient/relative isn’t insignificant for many healthcare professionals and it is something that is often overlooked.

To get a sense of how one health professional is so beautifully aware of what some brain tumour patients go through please read this wonderful article by Helen Speare, a Speech and Language Therapists with a special interest in brain tumours.

If you would like to learn more about the work I am involved with, do visit any of the following organisation’s websites:

The Primary care and Community Neurology Society (www.p-cns.org.uk)

The British Society of Lifestyle Medicine (www.bslm.org.uk)

The Community Therapists Network (www.communitytherapy.org.uk)

I will be presenting at the P-CNS event, Mind, Medicine and Music: Achieving Excellence in Neurorehabilitation, 5th of July, Tonbridge, Kent

We hope to have www.neuroncology.co.uk website up and running in the not too distant future. If you know of any possible sponsors who may be interested in offering funding support for this website development, we would love to hear from you. Please email info@p-cns.org.uk.

Thank you to the International Brain Tumour Alliance, www.theibta.org who gave permission for this article to appear here.