Thursday, 24 May 2018

Vestibular Neuritis and Explanations

On Tuesday I woke at 3 am to a nightmare, that I was dizzily spinning violently. I lay there in the dark telling myself it was just a nightmare, until I woke again at 6 am doing the same thing, this time I could see the bedroom and the swirling vision that accompanied it. 

Dave asked me what was up and I said I went madly dizzy when I moved my head, and as I showed him how, I felt like I was on a horrid swirling fairground ride! 

Just like when I first sat up after having my tumour removed. 
Oh hell!

A phone call to the hospital’s neurology department said there was no one there to talk to and I would need to go to A&E. So still wobbling (although the violent spinning had stopped) I get dressed, and Dave drives us back to St George’s. 

I feel totally nauseous, probably partly as I woke up so fast, partly as I am panicking as to what the hell this could be (and have all sorts of brain surgery worries running through my head) and partly as the spinning causes the nausea. I am sitting in the car unable to stop myself shaking and my leg moving, then stop myself retching and eventually throwing up! (Thankfully I’d not eaten since the evening before.) 

We get out the car and I have to do the arm in arm walk that I have done far too many times at this hospital, the memories and fears are all flooding back big time. Please let it not be my brain tumour or site causing problems… πŸ™


A couple of hours later, after blood tests etc, we finally see a Doctor who does various neurological testing and says it is unlikely to be my tumour or surgery causing the problems, but in fact my inner ear! Vestibular Neuritis. 

The last MRI I had was only 6 weeks ago and there was no sign of the tumour reoccurrence or any issues showing such as raised craniosacral fluid, and it would be VERY unlikely anything changed since then, plus my neurological tests are all fine. 

He says they are waiting for my blood tests results which would show if I had any bacterial infection, but as my ears look ok and I have not had any pain, he said it is probably viral and tells me he will be back when the blood tests are through. 

In this time a nurse kindly asks for a urine sample and my permission to do a pregnancy test!… I go back to the cubicle laughing at the possibility and Dave deciding that a pregnancy is as terrifying as a problem with my head! I totally agree!

The doctor comes back a while later, saying my bloods were all fine, with no sign of any infection and I query with him could it have been a type of seizure or anything (I have not had one, I don't know what they feel like) and he says no - seizures don’t ever just cause dizziness, plus Dave tells me I was talking to him throughout. 

Also two years after my surgery (especially with everything looking fine on the scans) it would be very very unlikely to suddenly cause a problem.


As I then questioned it saying ‘It just felt too similar. The only time I have spun as violently as that or felt so dizzy is after the surgery and especially as my neck muscles are so tight at the moment it made me scared that something was wrong.’ 

I then added that the neck muscles didn’t feel that different to what they have done since my op, but they have ‘constantly been tight today, like I have a board inserted down my neck’ and he said “Is it as they explained after surgery what your side effects would be?” … um no… no one explained anything!

We were then given a discharge letter plus the choice of tablets (no thanks) which he said wouldn’t shorten the illness, just possibly help with the dizziness and nausea (double no thanks! - I don’t manage drugs well and even paracetamol make me feel sick) and so went home without them, still wobbly, but slightly less panicky.

It is now two days later and I haven’t had anywhere near such violent spins, but have felt my vision spinning gently since, especially after I sit up or look at screens too long, and had 48 hours worth of nausea (sea bands, ginger tea and homeopathy helped) plus still feel a bit wobbly when I walk or turn… but I guess I have got used to that over the last two years!

But what is getting to me is the fact he said:

“Weren’t you told about side effects after surgery?”



I had also seen similar a couple of weeks ago on a brain tumour support group Facebook page, when someone questioned when was I seen after my craniotomy. Now I did see the neurosurgeon 3 weeks after, when my neck was swollen (as urgent - checking to see if I had too much fluid on my brain), and again as a routine follow up at 3 months. 

Had a few neuro-physio sessions 2-4 months after surgery - but she could not advise me on anything to do with my side effects or surgery - apart from the balance side of it, and I saw the Genetics team to follow up if I had VHL (plus scans, blood tests, eyes tests.) 

But nothing about how I was, how I was coping, how I was healing, when to do things or what I should avoid, what side effects were normal, ideas on coping with agonising healing neck muscles, getting over the trauma of major surgery, help with our finances - or anything… 
basically we left the hospital 48 hours after surgery and Dave was my (unqualified) nurse, with my kids some kind of (also unpaid and unqualified) care assistants!! 


I didn't even get a leaflet with charity support lines to possibly help me…

After my 6 month scan, I wanted to see the results, ask some questions. I didn’t really know why I had a large deep hole at the front of my head, nor how big the plate was, were the various feelings and numbness ok, what were the chances of it ever coming back, if the dent in my neck muscles could be improved, or even were any of my neck muscles actually removed during surgery? 

I had emailed several questions to the surgeons secretary in December 2016 just after I received my scan results, but it took until August 2017 to actually see him and get the answers!! 

I kept saying it doesn't have to be Tim Jones, but anyone who can answer the questions for me, and I am happy to be emailed, written to, called or see them in person - whatever is best - but I would like to speak to someone please.

8 months is a long time without any answers! 


Although in the end by the time I got there I pretty much knew what many of the answers would be, as I knew what side effects I was still getting and so time had answered for me.

 ⇎⇎⇎


This was why I had started writing… I had no one to get these answers from, so I just started writing to myself to help release the trauma and emotions I was having. 

If I had seen a nurse or therapist maybe I would never have got to question myself? Plus there was a very strong drive to write things down so that no one who has to go through similar in the future should have to go it alone… it may be a benign, once removed tumour with no serious side effects, but I still had a craniotomy! 

Someone was ‘playing’ with my brain for a while! 
I still have side effects daily. 


And it is still singularly the most stressful, painful, emotional, exhausting, damaging thing I have ever experienced, compounded by not knowing what I should tell my kids or if I’d even come out of it alive and unscathed.

Many of my blog posts are written as I still see people asking on various online support groups these similar questions, I see them being reassured and less fearful by knowledge and support, yet other people are providing this for free. 

As I asked before, why isn’t there a craniotomy support nurse and a counsellor available for all patients after brain surgery? 



Not just those who have cancer or ongoing problems? (Although from what I have read online it doesn't even seem all cancer patients have this support!) Why if the hospitals cannot provide this do they not at least give out the contact details of the various brain tumour support groups?

It needs to change… 
Anything will be a start… 
Please… 
You cannot just send people home to get on with it… 

hypericum flower - used for depression and anxiety

Sunday, 20 May 2018

Facing Brain Surgery - Yet Hair Still Matters!

One of my (possibly totally illogical) fears when I knew I would have to have brain surgery was would they shave a large part of my head. I know hair grows back, and it really is a minor part of all that is being done, but I have always had long hair and it’s felt ‘a part of me’ for a very long time. 

Thinking you might lose it is not something I wanted to face on top of everything else, when I was already feeling extremely vulnerable and didn’t want the world to know I was having brain surgery

Plus my hair hides a multiple of things - and it is probably my defining feature. If it had to be done then I would just have to face it, but I remember asking on a brain tumour group if it was likely they would shave much, as I needed to know. 

As to cut it all off would be a bit like saying I was going to lose a limb - lose a big part of me - and I would need to ‘get my head around it’! Thankfully they told me that the surgeons normally just shave a small amount either side of where they will cut and minimise any hair loss.

I guess part of my fear of losing my hair was also a memory I had. Recalled vividly while wondering why I had just been called to go back to the consultant to find the results on the same afternoon I had my MRI. Terrified as to what ‘problem’ they had obviously found. 

In the drive back to the hospital I just repeatedly had a vision of me as a young child walking up the front footpath to my house with my Nan walking behind me admiring my curly red hair saying:

 “I hope you never have a brain tumour and they need to cut them gorgeous curls off”.

“Is this what I have - a brain tumour? Did she know what would happen? Why on earth did she say this? Am I really going to have my hair cut off?”


I know I was also scared I had Multiple Sclerosis or some other degenerative brain disease, but somehow inside I knew it was a tumour even then. This was going to have to happen…just like my Nan predicted…😨


I really wasn’t ready to have my hair cut off, but had looked online at ‘back cuts’ before surgery, where they all but shave the back part, near your neck (where I knew my cut would be) so I could keep the top long, this seemed bearable, but how would I predict how much of the area would be shaved in surgery? 

In the end I decided to leave it until after the operation - partly helped by feeling so ill and not sure I could face the hairdressers, let alone having to wash my hair there and bend my neck over the bowl. 

My neurosurgeon said he was planning to make a straight cut up the centre back of my head, and would leave as much of my hair as possible -  I could have a back cut after.

As it was he didn't cut a straight line, I have a bump on the centre back of my head which he said wouldn't have been the easiest place to put a plate over afterwards. So I had a S shaped scar instead, starting at my neck and going towards my right ear. 

I also didn't realise I would be getting a fair sized amount of hair removed at the front of my head - for where the drainage tube would be inserted during and after surgery.

Here are my pictures just after surgery. As you can see the surgeon only shaved a minimal amount of hair for the size of the cuts.




Just before surgery I had tied my hair up in a top knot ponytail, assuming they would leave it tied up out the way and still be able to access my head. But clearly this didn’t work as after my hair was simply a glued mess! I looked at myself and thought I looked like a witch, who knows what others thought? It certainly made me look like I had just had brain surgery! 😁

This was the attractive mess I woke to the next morning, and the back of my hair was glued together in a lump, not tied up! The glue gradually unglued itself, but not enough to brush it or even tie it up again neatly.



When I was discharged 2 days after the surgery, Dave and I were told that I could wash my hair from the next day, but he had to do so very carefully for only a short time, avoiding rubbing my head at all and using gentle shampoo. (I only use Faith in Nature shampoo - which does not have SLS as this irritates my scalp and this was brilliant) 

We were also warned that it would take a couple of attempts at washing to get all the glue out. 
What we were not told was that when Dave washed it, huge clumps of hair that they had obviously shaved during surgery would also fall out with the glue!

I had only felt up to attempting to wash it 2 days after I left hospital, even then I wasn’t able to muster the energy to lift my hands for long enough to wash it myself , was disgusted with how fake and ‘wrong’ my head felt, terrified I would damage a staple or something as I couldn't see what I was doing. 


So I sat in a shallow warm bath (I was told not to soak the scar in water) while Dave showered and washed my hair. It oddly felt like a test to see how I could cope, my husband having to nurse me, but one that I knew I wasn't allowed to fail. 

I managed a few minutes, then these clumps of hair fell out - maybe each only a few centimetres patch from where they shaved me- but my hair was well over 30 cms long! So the amount that fell out seemed extreme. Huge horrid clumps I couldn't feel. 

It felt like he was touching a wig attached to me, not my own hair. I felt sick and cried. I also hated it when Dave touched my head, I knew he was touching it, but I couldn't feel it properly. 

I kept asking him how much glue was on my scalp and he said only a little, yet I felt like I had a centimetre thick layer of papier-mΓ’chΓ© on it. 
(It would take me another 3 weeks to find out that the main occipital nerve was cut in my neck, and my head would be staying numb) 

Plus I felt insanely dizzy, so all I managed was to sit there with my eyes mostly shut, trying to hold it all together while crying stupidly. 


After all the clumps of hair and most of the glue had fallen out, I said that was enough and Dave put a towel on my head, helped me out the bath and found me clothes. He then had to gently dry my hair while I felt I could barely stay sitting upright much less hold the hairdryer to my head. I normally dry my hair with my head upside down, but I couldn’t bend my neck from the pain, so he partly left the roots damp as I couldn’t cope with any more. 

My daughter put my hair in a plait, trying to cover as much of the scars as possible (my 9 year old hated seeing them!) And it stayed like that for a couple of days.
8 days after posterior fossa craniotomy
This picture above was taken on the 26th May, 8 days after surgery (when my neck muscles really hurt- excuse my face!)

The picture below was taken on the 30th July - 2 months after surgery

2 months after posterior fossa craniotomy


But as you can see even then the scars were hardly visible within the rest of my hair.

In the end I decided against the shaved back cut, due to my scar not being only in the centre at the back and having to shave a too bigger area. 


But several months later (even after I had got over the fact I would always have a numb side to my head) each time I touched a patch of my hair, or it got caught slightly in my handbag shoulder strap, or I moved my hair at the back.

I had this horrid sensation that I was touching a wig as my hair did not feel connected to my head. 


Plus it also triggered me far too much in being able to feel the numbness without actually touching my head. Which most of the time I couldn't now feel unless I was either in a cold wind or I touched it. 

I also had the added annoyance that I mostly tied my hair up - but if I leant on a hair clip it felt like my whole skull had a metal plate inserted in it! I hoped that if I got it cut, by the time it grew back I would have either got a bit more feeling back or just get used to this numb feeling - which I would hopefully get used to better as my hair grew again. 

I also hated the tufty bit of hair at the front of my head, which as I tied the rest of the top of my hair up- stuck out as it couldn’t be tied.

So in October 2016 - 5 months after surgery -  I got the back of my hair cut to the same length as the parts that were shaved. I simultaneously hated it (I wasn’t me!) But loved it as it did exactly what I wanted - it stopped me constantly feeling the numbness.




tufty hair after craniotomy

'short' hair after posterior fossa craniotomy

'short' hair after posterior fossa craniotomy


Two years later and my hair length is almost back where it was, although I have chosen to keep the top shorter so I don't need to tie it up - it doesn't get in my way, and I still don’t like leaning on hair clips. 


I actually measured my hair length 2 years to the day after surgery and it was 13 inches!! - apparently 12 inches is the average growth rate for 2 years. I am back to being ‘me’!

I also feel the numbness far less, I think the area I cannot feel is only a tiny bit smaller when I touch it than it was before my haircut, but I normally cannot touch my hair and feel the wig sensation. I think my body just doesn’t respond to the feelings the same now. So the haircut idea did as I wanted!😊


Hair grown back long 2 years after craniotomy


I also read the book ‘Do No Harm’ by Henry Marsh recently. One page which really stuck out about shaving hair was: 

“There is no evidence that the complete head shave we did in the past, which made the patients look like convicts, had any effect on infection rates, which had been the ostensible reason for doing them. I suspect the real - albeit unconscious - reason was that dehumanising the patients made it easier for the surgeons to operate.”

I am glad our surgeons now realise we are human! πŸ’— 



                                                                        Do No Harm - Henry Marsh

Wednesday, 16 May 2018

Mental Health and Hospitals

It’s mental health awareness week and so over the last couple of days I have seen various posts on Facebook in support of this, trying to raise awareness that struggling is ok and not a sign of weakness and its actually showing strength to seek help, as well as personal stories.

But a couple of the posts I have read, including one on a brain tumour support group, have had me in tears… bucket loads of tears at how little help and support there really is, and how less stressful tough situations could be with some change. 

A few stories involved hospitals - giving birth, a family member having surgery, or struggling with a severe health condition and the fact there was just NO support for the person, partner or parent. This person had then gone out of their way to talk - several years later -  opening up how vulnerable and isolated they were, how little help they got (basically none – apart from friends and family) in the hope that their story will possibly support others and also, hopefully, help to change things…

Their stories just hit home hard…


When my children were born and nothing major went wrong, just the attitude towards me was awful, totally undermining me and my instincts- and most of these were by women, but in a seriously misogynistic culture . I wrote this here on my personal Facebook wall on Monday:

“20 years ago today I knew I needed to be where I was about to give birth, I went to hospital after just one (painful and long) contraction and then had no more. When I got there I was put on a machine to monitor me - that was showing 100, but I had no idea what it meant- as I was talking to Dave throughout with only a 'tight' belly feeling ...
A while later he went and moved the car and I got up... To be faced with 30 mins of back to back solid contractions until finally a midwife realised I was in the loo a lot and was in fact about to give birth!  πŸ˜³
A further 10 mins later Zach was born with his hands up by his head  πŸ˜¬ (probably covering his ears from my swearing!  πŸ€) while I just sat shaking with shock!
It was the start of me trusting my own instincts ... (And having home births after!  πŸ˜‚)
But 20 years later and others still do not accept instincts are often right ... It feels we have to go backwards to go forwards ... πŸ€”
20 years ...  πŸ’•

I could have added that in that time I was in hospital, I was told I had only just arrived and basically to stop moaning as I couldn’t be in ‘proper’ labour yet as I could walk and had only just arrived, and basically laughed at when I said I needed to be where I was giving birth… 

but if I had ignored my instincts at the best I would have given birth in the car park! 

Why are our instincts and feelings ridiculed and ignored? With birth, it is a instinct going back forever… but it seems the doctors and midwives cannot control instinct and so try and medicalise it and remove all power from the mother.

With my other births I felt many decisions were taken without my agreement (and I never had an emergency!) Even with my second home birth (my 4th labour) the midwife didn’t believe me when I said I was in labour - as again I was walking and talking without ‘regular’ contractions. I had told her this is my 4th birth and I don’t do ‘regular’… but she went home anyway. 

Dave called her back 40 minutes later when I said I had hit transition- and sure enough when she arrived I was almost starting to push and he was born about 10 minutes later!πŸ˜‚

When this baby was ill in hospital a few weeks later, I was a wreck. It had brought up past bad memories and I was struggling to cope. Not to mention I had to sleep on a camp bed at the side of his hospital cot for a week, waking every short while as my baby was coughing and choking, also struggling with the same cough draining me, trying to pump milk with no support.

I had asked if there was anyone to talk to, and there was nothing. No one. Support and help just didn’t exist. 

The nurses just looked at me as if I had asked for a ridiculous stupid request, not someone to listen… and they wonder why mums have post natal depression, and post traumatic stress syndrome afterwards?!



I have also had other medical ‘treatments’ where a Doctor has literally laughed at my pain and said “What do you expect?”… clearly not understanding anything of what I was feeling.

Then when I knew I had a brain tumour, shown a picture of this lump in my skull by a doctor who was not even a neurologist- it took almost 2 weeks to see the neurosurgeon. 

Does anyone have any idea about how many horrendous thoughts can go through your head in that time? 


The GP surgery didn’t even offer me an appointment (not that they knew anything anyway), there was no mention of support phone lines or groups or counseling or anything. I was a wreck… a terrified jibbering sobbing wreck.

Then after this meeting with neurosurgeon, still nothing… just wait for your operation date like a good girl.

Then before surgery- nothing. 

Although when I went in to theatre and was lying in the pre surgery room, shivering, a nurse saw what a state I was in and held my hand for a while. A human angel. πŸ‘Ό


After surgery, when I just couldn’t cope with the woman in the bed next to me crying and moaning, machines bleeping everywhere, then suddenly being treated for a blood clot … the final straw for me on top of my head feeling like it had been run over by a truck and I was in some parallel universe nightmare… I still managed to walk outside and cry on a chair near the nurses’ desk until the morphine hit and I was almost asleep sitting up. 

The only person able to talk to me a 20 year old student nurse. I wish I could say thank you to her, I have no idea if she still wants to continue nursing after this? But a girl younger than my son was the only person who wanted to help, who could help, who even had the time to ‘just’ listen. 

Why is there not a counsellor or the wards after brain surgery?

Do they have ANY idea just how terrifying it is being there? For the patient and our family?



Then I was discharged, just 48 hours after surgery ended.
I had nothing - apart from a medicine list and instructions to remove the staples at 9 days! 
No idea what to do to help the pain, the nausea, the pain in my throat, the dizziness, the exhaustion and brain fog. 
What signs could be a possible problem? 
What I shouldn’t do? 
I didn’t even know at this point I had the main nerve in my neck cut- that my head would be numb forever. 

Much less any support or counselling, or a former patient who knows what you are struggling with, a helpline number, just an ear to listen …


And just thinking how Dave sat outside the operating theatre for over 6 hours, watching people being wheeled out and past in the corridor outside (including one with a sheet over them!) just makes me so emotional.

 … but he was there the minute I was wheeled out. His voice telling me “You’ve done it Jo”, while I was being moved to the special care ward, brought me back to my senses. Yet he had to wait on a hard chair next to the lift for all this time during my surgery… no one to talk to, nothing

We are made to ‘get on with it’, and when we struggle there is no one to even listen. No wonder we are supposedly having a mental health crisis in this country?

Plus today is the two year anniversary of when I was admitted to St George’s Hospital. I had gone there in the morning hoping to get some painkillers for my headaches… and got admitted, and told my operation would be brought forwards. 

I had not said goodbye to the kids. (I had left before waking them as hoped to be back home soon – although how do you say goodbye to the kids before major surgery?!) 


This was the day when I didn’t even know if I’d ever go home again, or would have major damage if I did. 



I don’t know how many emotions went through me that day- but I know I didn’t think that many were possible! So reading mental health stories from others is raw today.

I ended up walking the dog on his daily trip to the park, with the cold wind blowing away yesterday’s sun, just feeling like the weather was doing what I felt like…shifting the old away and releasing. I cried my way around most of it. The wind helping me release the emotions along with the tears.

I have written this releasing the rest… Tears rolling down my face. We need change. We need to talk. We need to support others. 
If anyone ever wants me, even to just listen … I’m here.
πŸ’•

http://jobarlow.co.uk/original_art_for_sale.html

Monday, 7 May 2018

What Have I Lost?

“What have I lost?” Someone asked me these words a few days ago and I have been mulling it over in my head without really coming to an answer. So tonight I am asking my soul the question with automatic writing. This is the answer…

What have I lost? … And what have I gained?



I have lost: much Anxiety, some Panic, caring what others Opinions are, Worry, Hate, Fear, caring about being Accepted.

I have gained: Peace Inside, Inner Knowing, Trust, Patience, Love, Joy, Living in the Moment, Being ‘Me’.

And this is worth SO much more than struggling with words sometimes, the exhaustion, a numb head, a stuff neck, odd head pains, being a bit wobbly and having a muddled brain!





I am 44, but I accept me more than I ever did before.

I appreciate my life re-started almost two years ago.

I was given another chance.



I have more freedom than many can imagine.

I see things I never saw before.

I feel things I never felt before.

I know things just by really ‘looking’ at the situation.





I don’t see ‘bad’ -  just weakness, imperfection, fear, sadness, rejection - often all being covered up with various actions, addictions, avoidance, anger and blame. Just as people don't want to address their own self.
.
They try and avoid the pain by hurting themselves in doing anything they can to not face it - rather than really admit the problem and listen to their true core.
 

This planet is full of unhappy people, fooled in to doing what is ‘acceptable’ or ‘right’ and not what they truly desire.


They cannot see the lies being fed to them from all angles, so they blame and hate, feel weak, inadequate and fearful, believing their happiness lies in another holiday, the latest gadget, car, pay rise, new spouse, new house etc - when all the time it is laying hidden inside them waiting patiently to be heard, listened to… until one day it screams at them. Demanding action and addressing.

Even then, many refuse to take notice, they still do anything to avoid really listening to the pain. The pain of their body being ignored and silenced.


They have to act tough, bottle it up - anything to avoid it.

So they take a pill, swig a bottle and act like all is normal.




But it can never really work, unless they hit that rock bottom, where there is no where to go but listen to yourself. Feel every last drop of pain, every last ounce of fear, anger, hate, rage, jealousy and ‘normality’. Until they are buried under tears.

Then the tears turn into acceptance, and slowly into joy, love and peace - and an inner knowing that no one can knock you off your track.

Ever.


Then you have power more than your know and you realise you haven’t lost anything, but have gained the world.


πŸ’•

What have I lost?

Tuesday, 1 May 2018

SCAN RESULTS!

Finally!… It was one day short of a month since my scan… But I just have the news my head is:

 “All fine and stable”

 (… although maybe that is just the parts they can see on a MRI that are fine and stable?!…🀣)


It says on the report information that I have  

“post-surgery sequelae in the right hemisphere”.


Sequelae is a pathological condition resulting from a disease, injury, therapy, or other trauma. Which I am pretty sure might be this lovely dent in the front of my head where they inserted the drainage tube during surgery.


This was the MRI image from November 2016- which I think shows it quite clearly!


MRI after Brain Surgery - missing skullbone




As well as  

“Obvious post-surgery lacuna in the right cerebellum”


Lacuna is a cavity or depression - so I still seem to be missing a part, or two, of my cerebellum. (The parts I like to think of as my negative areas!) I had wondered if they had all just been squashed up by the tumour, but seemingly not!

Again the MRI images I have from 2016 pretty much make this clear. The second one also shows how screwed up my neck muscles were! (Probably still are πŸ™)

Cerebellum After Brain Surgery
Cerebellum and Neck After Brain Surgery

So basically I have 2 obvious separate holes in my head (as well as a smaller one where the drainage tube was inserted during surgery) and bits missing from my brain…  but other than that, all is fine! 🀣😁

But it’s been a strange thing knowing I was getting a follow up scan as well as an odd month waiting for the results… as I wrote previously I had been getting palpitations which I think were as I was waiting for my MRI to be booked. 

Then in the week or so from getting a booking date to actually having the scan, I had slight headaches again at the back of my head that were even waking me at night (although on the left side, not where the tumour was) as well as odd pains and buzzes in my head and neck, plus I had felt a bit more clumsy again. 


So while most of me was believing it was all ok and trying to trust, there was a small percentage that was slightly panicking. Thinking ‘Would I have to do this all again?’, although this time I also knew I could, which took away some of the fear.

Then after the scan I had a really strange headache for a couple of days just in one spot, in the numb area on the right side of my head. It felt like it was a really tender almost bruised spot that I had recently hit or something similar. But not being able to feel the area correctly just doesn’t help me much at all! 

Also, last time I had a MRI I had an awful pain in my head while they were scanning me, which I managed to try and block out and stay still and keep trusting all was ok, and as soon as the scan stopped and I got up the pain just disappeared. I feel it is probably a mix of all the emotions that the possible scan result brings up, as well as me being strangely sensitive to all sorts of things…

I also noticed that so many times in the day I was thinking about my head and the feelings in it now – the numbness, pains, sore scalp, itching ‘inside’ skull, buzzing, tight neck, or that something reminds me of before or after the operation and the fear and anxiety, the fact it is 2 years since I found out about the tumour, or the coming home with the amazing feeling of gratitude – but it seems every 10 minutes or so I am fixated on something to do with my head. 

Maybe this is why I’ve been feeling shattered again much of the time?


The radiographers had told me I would find out the result of the MRI within a couple of weeks and chase it if not, so I had this time frame in my mind. After the few days of headache, I blocked it out for a week or so, then as the 2 weeks were almost up, each time I heard the mail fall through the door I felt a little sick. But nothing. 

Part of me is then even more reassured that ‘no news is good news’ as if there was a problem I know the scans ‘should’ get fast tracked to be reviewed further and I would have been contacted, but the other part wonders if it has somehow just got lost.

So just before 3 weeks I contact one of the genetics team Doctors (Apparently the the hospital  have decided my follow up scans are not with the neurosurgeon, but with the genetics team as Hemangioblastoma’s ‘can’ be genetic and so, despite all my tests so far not showing any genetic problems, they will still be the ones monitoring me) and she says my scan shows as reviewed but there still isn’t a report on the system. 

I actually stopped worrying then, as I cannot imagine a problem would have been reviewed and not reported on soon after.


But I email her again the following week to see if it has been updated and yes, finally, I am free to forget about it, hopefully for another couple of years!

πŸ’•