Events summary

TIMELINE OF EVENTS

As with everything I’ve written of late, there are caveats!  This section in particular is patchy.  Some bits are likely to be just wrong.  There are a number of reasons for this…….  Everything happened so out of the blue, information has changed at various stages, we’re all exhausted, there’s been a heady mix of necessary but confusing prescription drugs, my brain is a bit swollen (literally), and there have been various ‘handovers’ between family members.  Mostly, we’re all human!  Importantly for me, it’s just about trying to give some sort of explanation about what has gone on and what is likely to come next. 

It is important to know that all Medical Experts have been amazingly honest and that the changes in results have been delivered as and when information has become available and has been assessed.  I am deeply grateful for that and have the utmost respect for them.  I have not felt patronised at any stage and their honesty has reassured me throughout. 

In terms of my family, they have done exactly as I needed them to do.  They have handed over responsibilities at various stages at my request, and have kept my stress levels down by trying to be as ‘normal’ as possible.  Again, completely giving me what I needed at any given moment.  Trusting me, unquestioning, whatever I need.  I could never have asked for more.

I will again try to be succinct, but that has always been a challenge for me…..!

DATE	APPROX TIME	EVENT/ INFORMATION AS WE KNOW IT
20.01.2017	03.30	My husband is awakened by what he describes as being ‘charged by a herd of rhino’.  I am having a grand mal seizure in bed.  Completely out of the blue.  He does what needs done.  Gets our son Fin up out of bed and they call an ambulance.  The ambulance arrives and emergency treatment begins.  This is about keeping me alive and stopping the seizure.  I have no memory of this bit at all. Initially I am taken to local A&E, which is conveniently located about a mile from my home address.  Throughout the night and following day I am moved between two fairly local hospitals (approximately 30 miles apart).  This is about keeping me stable and carrying out necessary scans to try and find out what has happened.
20.01.2017 – 21.01.2017	?	We’re all a bit lost with this bit.  There are movements between the two hospitals, scans, family arriving….  Everything you would expect to happen in the middle of a crisis. Strangely, and despite some ongoing seizure incidents (not grand mal but facial I believe) I have some very clear memories of this time.  They are patchy but focus on faces, names, feelings.  I also, for some inexplicable reason, began to contact people.  My family allowed me to do this.  They knew it was strange behaviour but also knew that I didn’t have a phone signal for half of it anyway, and recognised that taking my phone would be the most damaging thing they could do to me.  They gave me space, swept up after me where necessary, just rolled with it. Interestingly, my analytical mind appears to have switched into gear at a very early stage.  Why I felt the need to send a message to my Line Manager, explaining actions needed to be taken ahead of a meeting, is beyond sensible explanation.  Part of me just thinks my brain had been through such a shock that it was easiest for it to just pretend everything was normal.  Deal with work – that’s routine and doesn’t require any deep worry or thought.  Bizarre for those receiving, but so many just accepted it and did whatever was best for me.  I should point out that in the middle of all this, my bosses were dealing with a shooting attack against a police officer, day to day meetings, and a staff member who may be dying and has probably lost her mind.  If ever you have questioned the resilience and ‘unflappability’ of law enforcement professionals then you should rethink…… Who I contacted at what stage is kind of interesting, but also really very ‘pure’.  I felt instinctively drawn to people.  I have no idea why.  Some are obvious – people I have long, personal and loving relationships with.  Some are less obvious; people from work that I have shared laughs with, some people I just have always thought were decent but for no apparent reason. Communications went by email, text, Whatsapp, even some phone calls. At some stage I am told by a medical expert that I have probably had a stroke.  But scans and checks continue.
	Morning	Ongoing contact with completely random individuals.  One of my favourites is to a group of three close friends that begins “Man overboard!  Man overboard!  Man overboard!....”  The rest of the content is factual, appears completely lucid, but must have been nothing short of disturbing to read.
	Morning	Information from Medical Experts that an MRI scan shows a brain tumour.  Approximately 6mm in size.  In my right, temporal lobe.  My charming response was “Well, that’s a bit sh*t, isn’t it?”.
23.01.2017		Still in Rehab Ward of local hospital.  On high, but necessary, doses of steroids alongside anti epileptic drugs.  Still issuing bizarre orders and behaving a little oddly.  Still being completely supported by everyone around me!  I could be paying a bill one minute, marvelling over the joy of the taste of an apple the next, crying uncontrollably the next.  Very likely to be a bit high, undoubtedly suffering shock, exhausted from lack of sleep, and suffering from swelling in my brain. At some stage Medical Experts tell me it is unlikely the tumour is a primary.  It is more likely to be a bit broken off somewhere else in the body.  This is potentially bad news, but I am grateful for the honesty.
24.01.2017	Evening	Update from Medical Experts – there is no cancer outside the brain.  This is great news.  Obviously I don’t want a brain tumour, but I definitely don’t want to hear I am dealing with cancer throughout my body.  So it’s positive.
31.01.2017	09.30am	Attendance at Royal Victoria Hospital (RVH) to meet with Neuro Surgeon.  We’ll call her Lizzie.  She goes through scan results with my husband and I.  I remain officially an inpatient of local hospital Rehab Ward, but my husband has been allowed to transport me to RVH for meeting.  This is so appreciated and makes absolute practical sense.  I am not fit to be out of hospital, but neither should I be using up valuable resources such as ambulances.  Everything is done in consultation with my family and I, with the understanding that I am a bit confused and very, very frightened.  The support is simply unfathomable. Lizzie goes through the scans…….  Confirmation that there are two things going on.  I have a ‘spongy’, invasive tumour throughout a large part of my brain.  Right hand side, affecting temporal and frontal lobe.  The scans are fascinating and terrifying.  Early thoughts are that this is a slow growth, low grade tumour.  Extensive but has probably been there for years.  Incurable, but could be lived with.  Lizzie explains that she would like to have a further think about it and discuss it with colleagues.  Makes sense to me.  Treatment may be through medications, ongoing scanning etc.  No significant decisions made at this point. Further confirmation that amongst this spongy tumour have developed some cyst-like tumours.  These are different.  Angry.  They want to ‘take me out’.  There is no way of knowing why the cancer has changed, what their motivations are, or how they will continue to change and adapt.  These are the ‘nasties’.  Instinct would be to get them out, but the risks are higher.  They are touching places that affect area such as movement and speech, are unpredictable, and could be dug in hard.  Again, scary, but Lizzie wants time to think.  This makes perfect sense to me.  Don’t rush in.  We don’t know why they are there or what they want.  Yes, I want them out, but not at the expense of my life.  Realistically they could take me out at any given moment, but so could a bus…….  Not nice to hear, but it’s the truth. So two very distinct parts to the problem.  Two potentially very different treatment options.  A need for urgency but also a need for caution and review.  I don’t like any of it, but I accept the honesty and am heartened by the pure science.
03.02.2017	Afternoon	Discharge from local Rehab Ward.  I come home and start to try to rebuild a life.  It is full of attempts to achieve simple things.  I take 20 minutes to make a cup of tea, but then feel like I’ve achieved the most amazing reward ever.  I’ll be left exhausted, but so happy and proud.
07.02.2017	09.30am	Further meeting at RVH with Lizzie.  My sister goes with me this time.  Really just a further review and update on treatment plan as it currently sits.  Lizzie confirms she feels she can remove part of the spongy tumour during ‘sleep surgery’ and then we should follow this up with ‘awake surgery’ the following week.
22.02.2017	Planned ‘Asleep brain surgery’, 09.30am	Planned surgery to remove part of the spongy, invasive tumour.  Messy, shave your head, ugly scar surgery.  Not curative, but could buy me years.  I am content Lizzie would not attempt this if she didn’t think it was a genuinely good idea.  We have agreed parameters – I do not want to be left full-time cared for, however I can live with a few memory gaps or some physical disabilities such as minor facial droop etc.  She has an amazing mix of confidence in her abilities, combined with the empathy to not take chances.  She’s not a miracle worker and things can go wrong.  That won’t be her fault.  I trust her.  She’s got my back.
01.03.2017	Planned ‘awake brain surgery’, 09.30	Planned ‘awake surgery’.  This is a far less scary surgery.  It could get rid of the ‘angry peas’  There remain risks but the outcomes could be literally life changing.  There are fewer risks in many ways.  It’s explorative.  Still very scary though – I’ll be awake with someone poking about in my head.  But I’ll have an amazing team of speech therapists etc checking ‘what happens if……’  Better that than diving on in.  As with the other surgery, I am completely at ease with the reasoning behind the decision.

So there you are.  Some is wrong, some is a bit rambling, some is just confusing.  It’s the best I can pull together and I apologise again for the length.  It’s taken hours!! 

The most important bits to remember are this………  My family and I have until 22 February to get fighting fit mentally and physically for surgery.  That involves sorting out sleep patterns, controlling and mitigating the effects of necessary but annoying prescription drugs, finding our new ‘normals’.  I’m mixing mental stimulation through my writing, with physical stimulation through short walks.  I have to be careful of overstimulating in both areas and am very guilty of doing this……  I start slowly in the mornings and I wrap up slowly in the evenings.  I often get it wrong and then am frustrated and angry with myself.  Sometimes it just randomly changes through no real fault of my own.