Health Ombudsman Complaint - part 3

Part 3 of my complaint about my complaint to the health ombudsman!… I have listed only a couple of the summary points at a time, so I can include my comments about them in the same blog post.

This one is mostly on the 2 appointments I had with Dr Vo - when I asked for a referral to a neurologist and did not feel at all listened to, plus how the Doctors can write they did ‘neurological exams’ when they only did a part test.

3) I do not believe Dr Vo gave a true representation of my symptoms, on either of the dates I saw her, on my medical notes and have major concerns in her ability.

4) I have concern that the doctors at Giggs Hill were not following the guidelines for full ‘neurological exams’.

Point 3: On my medical notes on 9th March 2016 from Dr Vo it states that I had ‘no headaches’ which is not the case.

I do remember saying to her that “I never normally have headaches, but that I had been getting an increasing number of dull pains in my head and also head pains and pounding.” Which was significant and new for me. But I recall she asked this while she was sitting at her desk facing away from me and not looking in my direction at all.

To back my case - I had contacted a practitioner in December as I had been getting a dull ache at the bump at the centre back of my skull, and also been seeing, at various times since, a craniosacral therapist, Bowen practitioner, homeopath and osteopath because of these pains and dizziness. 

As well as the physiotherapist I had been referred to via Dr Brodie and had seen twice by the first time I saw Dr Vo, so I know I had both sharp and dull head pains or headaches (if you prefer to call them that) when I saw her. Hence why

 I don’t know how she could write ‘no headaches’.

I also have a chart which I write down any major symptoms on, and from the 28th February I had added a new column where I specifically noted “head/neck pounding” – which means I had already been suffering with this for a while before I wrote it with the start of my new chart.

She also wrote on this date that I had ‘no neurology’ I assume by this she means the nose to finger test? Which after looking at how they should be done online I do not believe she even did correctly as the distance of her finger I felt was the same in all, when it should have been a different depth. 

I had NO heel to toe test done, so with a patient complaining of severe and constant dizziness/vertigo surely this should have been the most obvious neurological test?

Dr Vo also has it on the notes and told me it would be a 3-4 week wait for my x-ray report to come back, despite it showing as arriving back the next day on my notes. Hardly helpful when I was told by her to book a follow up appointment as I left her surgery allowing this length of waiting time, when I felt so awful.

I think in my appointments Dr Vo decided the focus would be neck pain as I had equal concerns with my dizziness as well as the neck pains and headaches. I had told her this- but she focused on the neck pain, saying 

we could only address one issue at a time.  

My husband again walked me into the consulting room supporting my balance- as he did with all the appointments (as I would have bounced off the walls otherwise). I was also clearly told at the start of one of the appointments ‘what was my main symptom?’- even though I had several, which all seemed to be linked. How was I to know which is most serious or relevant in which to tell her? 

At the last count my body is still connected- so why she could only focus on one issue at a time, and not a symptom cluster I have no idea?

I feel my dizziness got ignored over the neck symptoms. If she had counted everything she may have seen a different picture?

On the final Glenlyn reply letter dated 30 January 2017, it says Dr Vo was acting re the specialists suggestion (ENT) when she offered me painkillers – yet the letter from Dr Wilson states that:

 “if her symptoms are ongoing particularly related to her neck then it may be worth pursuing a Neck Specialist Opinion”.  

Surely Dr Vo should have referred me for this if she was ‘doing as suggested’?

On the complaint reply letter from Glenlyn- point 3 states why I asked for a neurologist and on the ENT letter it suggested a ‘neck specialist’. This was as when I went to the ENT appointment, Dr Wilson spoke with a colleague as to my next best course of action and then told me they most likely thought my issues would be from my neck, but to definitely get to see another specialist- either a rheumatologist, osteosurgeon or neurology/neurosurgeon- which ever was best for neck/nerve pain in the area that I live. Surely a ‘neck specialist’ could be all of these?

This letter also states I should have got another appointment within a week if things were continuing, yet it took 2-5 weeks to get a routine appointment. Maybe Dr Vo didn’t realise how bad the appointment waits were at her own surgery?

Dr Vo also made it very clear as I left the emergency appointment that these appointments I was not to use again unless it was an acute emergency- which ongoing dizziness and pains were not. Also that she was not able to advise us in them if I could claim any type of sickness benefit etc -as I was unable to even look after the house let alone do anything apart from sit on the sofa. In fact 

I felt she took more time up telling me why I was wrong and what she couldn’t do then she did listening to and helping me.

It also says “she was reassured by both the ENT specialists opinion as well as the x-ray findings and normal neurological examination”- but surely this should be the opposite and she be even more concerned that none of these tests had found an answer to the cause of my symptoms? And in fact it be more of a reason to refer me to a specialist? (be it neck or neurology)

As I put in my previous letter “Both my husband and I felt that my symptoms and concerns were not treated with respect by Dr Vo, and that it felt she was all but saying I was exaggerating them or being a hypochondriac.

At no point in either of the two appointments with her did I feel listened to and that she was asking questions. I did not feel as though she understood how seriously it was effecting every part of my life. I kept trying to say to her various things that were happening to me in the hope it would make her connect the dots on something and diagnose me, but felt I was just being annoying and that she was not listening.

Also these points were raised on my last letter relating to on your link from:

http://www.gmc-uk.org/guidance/good_medical_practice/apply_knowledge.asp  (although the actual web page you gave me no longer exists) I have copied the comments I disagree with in blue.

14. You must recognise and work within the limits of your competence. So surely a GP should refer me to a neurologist rather than insist in take pain killers or insist I have an x-ray when I was showing progressive, sub‑acute loss of central neurological function?

15. You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:

a. adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient

I assume this does not include tutting and rolling your eyes at a patient when they say they don’t take pain killers? – as Dr Vo did to me and was witnessed by my husband.

Dr Vo and Dr Milne also did not examine me with the heel to toe test at all during the appointments. (only Dr Brodie and the private doctor did this)

b. promptly provide or arrange suitable advice, investigations or treatment where necessary. So why didn’t I get referred, even when I asked for a neurological referral?

c. refer a patient to another practitioner when this serves the patient’s needs. This did not happen.

16. In providing clinical care you must:

a. prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs.

So why did Dr Vo want to prescribe me diazepam? How did she know this would serve my needs, when she had seen me all of 5 minutes, I had none of the main conditions for prescribing it, and was already having the possible side effects as issues? If I had agreed to diazepam there would have been the very real possibility I would have had a stroke or died while spaced out on my sofa!

b. provide effective treatments based on the best available evidence. I did not see this. I believe if a layperson can find the evidence that I needed an urgent scan, a fully qualified Dr should be able to.

c. take all possible steps to alleviate pain and distress whether or not a cure may be possible I totally disagree that this happened. I was given further distress by being refused referral, felt I was not listened to and even ridiculed, even thought my symptoms were going rapidly downwards.

e. respect the patient’s right to seek a second opinion Although as I could not get any referral on request- we had to pay for a private Dr’s opinion.

If you supposedly read and took into account these comments on my previous letter, then 
please tell me how you know that Dr Vo followed all guidelines correctly if you were not there? 

I was there and I left the room in tears as I felt so disgusted and not listened to. She did not seem interested in wanting to help me, and for much of the appointments seemed more interested in writing notes at her desk than even looking at me. I felt she had no respect for my opinion on what drugs I wanted to take – or not, and didn’t seem to care one bit that I could barely do more than sit on my sofa feeling worse each day.  My husband was also there, his opinion was that she just wanted to write a prescription and get us out of the room as soon as possible.

I would also like to know what Glenlyn has written in their Significant Event Analysis meeting about Dr Vo (I am still awaiting this information) as regarding Dr Brodie’s actions it says they were “considered appropriate” at this meeting. What about Dr Vo’s?

Regarding point 4:

I do not believe that I was given a full neurological exam at any point after January 2016 at Giggs Hill, (apart from with Dr Brodie in January) It clearly says on www.gpnotebook.co.uk/simplepage.cfm?ID=x20040509161757089560 that these following 3-minute neurological examination has been designed by neurologists to exclude sinister causes of headache including brain tumour and haemorrhage.

Yet I am 100% sure neither Dr Vo or Milne asked me to do the heel to toe test or walking on heels- both which I KNOW I would have failed.  I walked in being held by my husband- how can they not have tested me for this?

I remember doing some eye tests and possibly facial ones, but even when I did most of these when I was admitted to St Georges their only ‘hard cerebellar sign’ noted was ‘inability to do heel to toe walking’. So surely if this was the ONLY test I failed despite having swelling in the brain and hydrocephalus - why weren’t they done with a patient complaining of dizziness by the GPs?

Health Ombudsman Complaint - part 2

Part 2 of my complaint about my complaint to the health ombudsman… I have listed only a couple of the summary points at a time, so I can include my comments I gave about each summary point in the same blog post.

The points I want changed or reinvestigating regarding my complaint against Glenlyn are: (although I have tried to write what I feel are the summary points here- I wish ALL the concerns I have in the WHOLE of this letter to be covered under one of these summary points and all of this letter deemed relevant- please tell me if they are not covered and I need to edit them)

1) As I asked on my letter dated 17/8/17: re Summary “Point 2) Please can you change this to:

“I am concerned that the practise refused to refer me to a neurologist upon request on two occasions."

2) “I am concerned the practice did not pick up any of the signs of a brain tumour despite them being almost text book signs.”

Regarding point 1 above. I know that both times I saw Dr Vo she refused me an appointment with a neurologist, despite me requesting one at both the appointments.

My husband was also with me in these appointments and heard her say she would not refer me. The reasons being she had not ruled out lesser issues which meant I needed to have an x-ray and then take painkillers to follow ‘her’ protocol (I cannot see this is any medical protocol).

I was not advised by her to keep a symptom diary or do anything else to show that I needed a referral.

I know it was written on the reply letter from Dr Strickland that Dr Vo didn’t recall refusing my requests for a neurologist, but why would a GP write she refused me as it will only get her into problems if I was right in needing the referral. (Which is the case)

This disregard and my extreme concern of what was happening to me was the reason I took a complete list of all the possible symptoms that might be even remotely related to Dr Milne when I saw her.

Regarding point 2- as I wrote on my last letter: “It says on ‘The Brain Tumour Charity’ website:

If a brain tumour is located in the cerebellum, symptoms may include difficulty with: Balance, A loss of co-ordination, Difficulty walking and speaking, Flickering of the eyes, Vomiting, Stiff neck, Problems with dexterity (skills in using your hands)

Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing.

Raised intracranial pressure (ICP): Headaches, Seizures, Changes in vision, Nausea, Tiredness

www.thebraintumourcharity.org/understanding-brain-tumours/symptoms-and-information/adult-symptoms/

I had, and told the doctors, that I had- Loss of balance, loss of co-ordination, difficulty walking and speaking, feeling my eyes were flickering when my headache was bad, stiff neck, changes in vision and if they had asked would have said I had problems with dexterity, nausea and tiredness.

I am also very concerned that it says: Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing as I felt that the headache and dizziness being worse with coughing etc was an issue and made sure the doctors knew this. Plus I was waking at night and the morning with headaches - when I never suffered from headaches previously.

I also have proof that the Doctor Milne knew of this as when I received my medical notes back from Glenlyn they included the letter I took into the surgery when I saw her on 23 March 2016

- Details are below, along with added highlights showing how almost each of the comments I had written were symptoms of a brain tumour.

Evidence 1 (Blue Text is a copy of the letter taken to Dr Milne on 23 March 2016)

I have added in red next to my comments a letter representing the symptoms of

Intracranial Pressure:

Headaches – H

Seizures – S

Changes in Vision – V

Nausea – (no symptoms)

Tiredness –T

Cerebellar Tumours:

Balance – B

Coordination – C

Walking and Speaking – W

Flickering of eyes – F

Stiff Neck – N

Dexterity – D

Current symptoms

Loss of balance- feel I am on a boat. Hit objects as I walk past, or think I will. B, C W

Legs feel wobbly and weak. T B W D

Hurts when I turn round too fast/far (parking car is hard) then get dizzy B N D

Occasional tingling/numbness in neck and head. (like been laying on something hard) N

Tightness on top of head, or back of head (between ears, above or behind) H N

Squinting to focus straight. V

Back of head and neck (atlas joint?) pounds at times. Definitely hormonal (started during period and bad with each since- could feel around eyes too) H N

Head pains seems worse if I sleep wrong (on front with pillow, or tip neck up and back) H N (medical literature clearly states “Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing”)

Both headache and unbalance worse when cough, sneeze or strain. (if I put my head against the wall it seems ok!) H N (medical literature clearly states “Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing”)

Occasional headache on front top of head. H

Started neck pain when painting ceiling, but vertigo started getting bad a month or so after this. B N

Symptoms for a while

Occasionally- Struggle to balance self with eyes- walking seems jolted and makes me feel unbalanced. V B C W

Travel sick and feel weak and wobbly after a drive. V B

Blurry eyes & floaters (had checked out my Kingston Hosp ages ago and optician) V

Lights blind me – sun or car headlights in dark V

Find myself pushing imaginary glasses up to see better (I had glasses for years) V

Had odd tingling episodes- was checked for carpel tunnel years ago. Plus have felt similar in legs to when all hairs been pulled out after cranial therapy

Occasional issues swallowing (keep wanting to swallow)

Occasional twitches, where I can feel a muscle tightening up and twitching, esp when stressed/nervous/cold. T F (I also wonder could these have been mini seizures?)

Clumsy! C D

Can I rule out?

Brain tumour or problem? (this was MY main concern… as even I knew I had several symptoms of a brain tumour …and I am not a Dr)

MS?

Chari malformation? neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected (this is a cerebellar disorder- so hence why many of the symptoms were the same)

Dyspraxia? (I have most of the symptoms!) can I get tested?

Irlen Syndrome? Some eye symptoms. Physical problems- Headaches & Migraines. Dizziness. Frowning. Mood swings in certain environments. Nausea. Sore, dry, red or watery eyes. Squinting Strain and fatigue. Stress from computers, reading and lighting. Tiredness. Stress. Panic. A feeling of disorientation. Restlessness.

Health Ombudsman Complaint Is this service honestly here for the patient?

Today I have finally written a formal complaint against the official reply letter I received from the health ombudsman about my initial concern and complaint that my GP’s failed to diagnose my tumour. 

The ombudsman apparently found there was no wrongdoing- apart from my surgery failed to remove my staples!  My reply is a little long and confusing so I will try and break it down into different blog posts… but here goes with the gist what I wrote. This is the basic outline of the letter:

"Sorry it has taken me so long to reply to your letter, but my husband called you shortly after we received your final report that we were totally dissatisfied and disgusted with. We were then somewhat in shock to realise that

YOU gave me the ‘summary points’ as to what you would review and these very same summary points were ONLY what could be taken into account for you to review after this, ignoring my main complaint points against Giggs Hill surgery.

It basically feels like a total farce and a waste of both of our time.

I have since felt rather disheartened to start again with the complaint, as each time I need to re-read it all or I forget some of the issues that I want to make, as my memory isn’t as good as it was before brain surgery and it is very emotionally exhausting re reading how you very nearly died and just how many warning signs the GPs had, and ignored.

We have also been waiting for Giggs Hill/Glenlyn to send us copies of my medical notes and also the ‘significant events analysis meeting’- the last of which after several ignored phone calls we have had to formally request under Freedom of Information act and are still waiting for.

We were also not made aware that I should have asked for my medical records before or during my initial complaint to you, but only got told this when we phoned to ask how do we complain about your service, the final report and the lack of response to my concerns. Surely this should be on your online guidelines or initial reply letter? After all you know what steps need to be followed as you do this every day, I have never complained to the health ombudsman before, nor had a significant illness and brain injury. Are you there to fully support the patient or not?

I am not also sure why I, as a patient, should be researching things like NICE guidelines on what testing should be done for the symptoms I had? Surely that should be what the health ombudsman should be doing for me… not seemingly wanting me to give all the information until you can no longer deny that the GPs made mistakes!

We both feel it needs to be made FAR clearer when you are coming up with the summary that these will be the ONLY points on which the complaint can be addressed. At no point during the phone conversations I had with your staff was I made aware of this. If I was aware I would NOT have agreed to only having the 6 summary points, would have clarified what can be covered under each point, plus would have asked for these summary points to have been in writing so I could digest them better and ask my husband for support.

For example under point 1 ‘Mrs Barlow complains about the care and treatment provided by Glenlyn medical centre from January – March 2016’, I assumed that this would include ALL of the meetings, treatments, referrals, drugs offered, time it takes to book appointments etc that I had with Glenlyn between these dates- but this is clearly not the case!

I have also had 3 different people who dealt with my case- Iqraa S (who I spoke with initially for 60 mins or so on the phone and she went over some of my concerns and clarified the initial complaint letter), then Gemma M and finally Charlotte C. At no point was I notified if this was normal practice, my case was being moved to a different department, or the staff left or were both working on my case etc. I just received another brief phone call from them when they wanted further information. In fact with one of these changes of caseworker, I called up to see what was happening with my complaint and was told that another person had taken over.

None of them called to ask if I would prefer to be called by phone or emailed. Which would have definitely have been mail or email- as I still struggle with memory and understanding since brain surgery, and email gives me time to digest it and reply clearly. Plus the phone line was often too quiet for me to hear well. This is surely against your own recommendations and what your customer service said I should have been offered"

(I have added the summary points and reviewed them all- which I will add on following blog posts)

"Despite your previous finding that the only mistake that Glenlyn had was not to remove my staples when I asked, please read all the info above and

tell me to my face that there were no other mistakes made?

From what I was told by the neurology staff at St Georges Hospital, when they brought my already urgent operation date forward a week due to my increasing brain swelling and fluid, I would be likely to have a stroke within a couple of weeks if I didn’t have urgent surgery. Several of the staff agreed that having a private scan probably saved me from that, or even death and expressed their concern and shock as to how my symptoms got ignored. Maybe I didn’t look ‘ill enough’ as I know one registrar expressed surprise at how well I looked after seeing my scan.

Yet from the mistakes by my GP’s on the NHS I still wouldn’t have even seen the neurologist by the time I had surgery. Even if they did then offer scans and surgery that same day it would have still put me in this dangerous life threatening position!

How can Glenlyn say that they did nothing wrong when basically it boils down to the fact that if we hadn’t paid privately I could well have had a severe life changing consequence - or be dead? They would have been paying out a little more compensation to my family than the costs I asked for…

That is what this case boils down to- two doctors failing to diagnose my severe symptoms, offer me an MRI or urgent referral for a very major, albeit rare, problem that could have killed me if I had not had parents who paid for a private Dr who all but instantly suggested I needed an urgent MRI.

Isn’t this exactly what we go to our GP for?"

…it actually scares me. How many people have died because they were ignored like this when they saw their GP with similar symptoms of a brain tumour? I was ‘lucky’as brain tumours go as mine was benign and this 3 month delay didn’t give cancer a chance to become untreatable with surgery. Mine was able to be cut away. Others are not so lucky as I want ALL GPs to understand what the symptoms are for brain tumours, so they don’t ignore or treat any more brain tumour patients as a hypochondriac

.

Money and Exhaustion

Today I spent the day crying…

The final straw that started it was a letter from Tax Credits saying they were reducing our money by £50p/w as we had underestimated our 2017 income by £1000. With that I cancelled my small monthly donation to Water Aid and my organic food order from Riverford, as I simply couldn’t afford to buy organic for a while. And then I cried.

We are down to the basics as it is. I don’t spend money on things that they even allow as expenses for working out your monthly budget when in debt!… 

I don’t buy alcohol or junk food, don’t buy cigarettes or e-cigs, don’t pay for a take away or eating out (except maybe for birthdays!)
I don’t buy coffee or other drinks when out (I bring a warm drink in a flask or drink free tap water) Don’t have expensive day’s out, or even many day’s out.
I don’t go to watch sports, or the theatre, or concerts, or go to the cinema – although we very occasionally have an educational trip out as our only school aged child is Home Educated.
We also don’t pay out for school uniform, school dinners or school trips. 
Nor pay pocket money. 
I haven’t been to the hairdresser in months as I mainly cut my kids, husband's and my own hair.
I can’t afford the gym, 
or to even go swimming
Nor buy lottery tickets, newspapers or magazines.
My mobile phone bill is about £10 per 3 months.
I don’t pay for Sky or cable TV.
nor pay for any website subscriptions. 
I don’t have manicures or pedicures. 
Barely buy makeup (and when I do it’s with birthday money!)
Stick to the same car and don’t care as long as it works.
Can’t afford holidays or weekends away…
I didn’t even bother with Christmas presents last year. 

With my money I choose to buy organic foods for both my and my family’s health, support the environment and use Riverford as it’s an ethical food cooperative- where no one gets a fat cat salary.

But I can’t.

I can’t work, I can barely keep the house organised and Dave still cooks most of our dinners as half the time when I do I am crying from the fact I can no longer multitask, or that I am exhausted for doing so. I often still need to go to sleep or rest during the day, especially if I get up before 10 (and sometimes even if I get up after this!) … I cannot see an employer accepting this as an option?!

The last few weeks I have been trying to add my art work on my website, promote it and my book a little and try and be proactive in earning myself an income. But after a week or so of this I crashed. 

Yet at the thought of Dave even possibly having to get a ‘job’ (rather than be self-employed) to support us (its amazing how many people go when you are not there for them 24/7 and so many clients have disappeared since 2016) I tried to do a bit extra and cook dinner and try and keep the house more tidy, I just felt like I was drowning in it…

Then a week or so ago my back went, I sneezed sitting down and it started seizing up. Just as I was looking at our finances- umm and they say lower back issues are lack of (financial) support… 

I didn’t listen to my body shouting at me to rest and kept going on. After all it was Dave’s 50th Birthday and he was having a gig to celebrate.

But thinking about it now I was getting messages loud and clear to slow. The day my back went I managed to leave the kitchen hot plate on while boiling butter beans and went out! Dave called me half an hour later saying he walked into a kitchen full of smoke with a rather smelly black saucepan! I had totally forgotten to turn them off or turn them down and tell him to turn them off in a while. 

I managed to be distracted when I went out for Dave’s birthday, and all but drove off with the car door open and someone not even in the car…  And I know the last couple of weeks I have been really struggling for words. 

I have constantly done things like calling the spaghetti bolognaise ‘Yorkshire pudding’ instead, and almost every appliance in the house the wrong name. (One day someone will put the dishes in the washing machine!) Forgotten things totally, said sentences completely wrong.

So after a late night on Friday- I crashed. I was exhausted. I couldn’t do a thing all day and went back to sleep for a couple of hours on the sofa. The next day, despite getting up at 11am, I briefly used the outdoor gym and felt my body had turned to jelly and needed another sleep by 3pm! 

I had wanted to go out, but I was far too exhausted and unable to think, let alone speak straight that I knew I couldn’t. I went to bed for the night at 10pm with definite brain fog. I didn’t wake until 10.30 today and felt like the fog had lifted a little…

But then the tax credits letter hit the kitchen table. I cried the lap of the park walking the dog and whilst that usually clears away my emotions I just couldn’t stop even when I got back in.  

How can I earn money if the minute I do anything more than ‘normal’ I just crash after- totally shattered?

I want to do something worthwhile for others, but it has to be when I am able to. I have to accept this as it cannot be another way.

Brain fog- reality is somewhere behind

I’ll Restart Again Tomorrow.

Last night we again ended up with no children around, and so were asked if we wanted to go to a local friend of a friend’s pub for New Year’s Eve. Yes, why not?

I was fine about it, I don’t really see any more significance in the New Year being a new start than any other day of the year. 

The 18th May- the day I had brain surgery is a more of an emotional time to me and of new beginnings starting. 

So Dave and I went with a friend, along with two of our parents who were with us.

The pub was nice enough and the people who run it were lovely and chatting to us like friends too. But just a few minutes in and I don’t feel I fit there. 

Firstly they were raising money for ‘Stand up to cancer’ and although I know this isn’t a mainstream or even spoken about opinion - I struggle the typical viewpoint to 'fear' and 'fight' cancer. I hate all the pharmaceutical companies, the oncologist's and charities who exploit people’s suffering for profit. There already are known things that can help get rid of cancer- yet these are hidden by the 1939 cancer act and so barely anyone knows about them. I have known people shrink their tumours naturally, yet the doctors just don't even ask what they did...? Saying it was 'spontaneous remission'!!

Many a time have I heard when you address the 'cause' of  the cancer you can heal - and not just expect to stay the same, eat toxic foods, use toxic products and think toxic thoughts and take a magic pill that will cure you -as seems to be what these charities are standing for... (My thoughts on this are here)  I honestly don't believe they will ever find this 'magic cure' however many billions they spend... 😪 and so I cannot be part of this chairty which I feel dis-empowers people.

OK, so I just avoid that part of the room and can easily refuse to buy any raffle tickets.

Then the pretentiousness of many of the people there starts showing… or maybe that’s just me feeling the amount of people who were doing or saying something just to be popular. The ‘surrey bubble’ people as I call them. Preening themselves in the bathroom mirror to put on their persona so no one will notice their insecurity.

Then there is the alcohol… that socially acceptable poison (yes I know it’s a pub- what else should I expect?!) and the fact it’s so hard to just get water to drink, and the looks of pity when I do. I am feeling more separated from ‘people’ by the minute…

For a while there was a singer playing acoustic guitar who kept my head connected to something I knew- music. Then he stopped.  They still had songs playing in the background but the noise of people just seemed to be getting louder and louder with every drop of alcohol they drunk. The high pitched voices showing off their latest achievements or talking about the trivial. 

After about an hour I am starting to struggle, I feel like I need to run to find some peace. I go for a slow trip to the bathroom and just take my time in the comparative silence there. But it doesn’t last, there is only so long you can loiter in the toilet!

I am still trying to block out everyone apart from who I am with, but it feels like the noise is still increasing with each minute and my patience and coping is falling rapidly. I know a few years back I wouldn’t have been able to take any more and would have gone into overload, told everyone to fuck off and driven myself home at this point. (One huge advantage to always being sober and the one driving) But instead I pull out some ear plugs and grab Dave’s phone and try and zone out with that. 

Although it doesn’t help much when everyone else on social media seems to be going on about having a Happy New Year too. Nothing personal and how they are actually feeling, just this ‘say what we are supposed to say’ bolloxs. 

It feels like there is this huge elephant in the room of how unhappy everyone is, yet they don’t dare say their truth and instead just grab another drink…

My brain is on overload with the noise, or is it the fakeness? I don’t know if it is the after effect of brain surgery, a possible touch of Asperger’s or just being a little introverted and needing my space and solitude, but whatever it is …I can’t hack this. 

I am thinking I must be one of the only people who can stand taking pictures of a band- near a fucking PA speaker, a drummer and bass and guitar speakers; but cannot stand cackling women talking all night at full screech ... my brain felt like it was exploding… 'Get me out of here'…

I am trying to work out why I don’t feel the need to run at any of Dave’s gigs, yet an hour with just the noises of drunken people talking is just too much now? Actually my ideal at a gig would be to have someone I know also sitting watching with me and just be there so I am not alone with the other drunks in the pub. 

I actually quite like sitting alone, drinking water and singing the words to myself. The music and the words heal me, they make up for the rest of it.

Also (as someone who hasn't drunk alcohol for over 25 years) it's easy to see the people who are drinking compared to those who don't. Those few that don't look healthier, their energy is different, they know what you are talking about and are just more 'awake'. They have addressed their demons (or spirits) - literally! 

Whereas right now I can feel the self-destruction and yet them thinking this makes them happy - despite the fact I can almost see them breaking inside. I don’t fit in here.

I sit there with tears rolling down my face. 

Then through my blocking out earplugs and even more blocking out, trying to switch off, brain - I hear its midnight as the incessant cackle seems to get even louder. I vaguely look up and smile at Dave as he says Happy New Year, but cannot manage it for anyone else. If I do I will start an avalanche of tears- and I have to drive home, and cannot do that with blurry eyes. So I stay staring at the phone.

I sit there and just send silent thoughts of love to my children. Then my mobile rings and it’s Roan on the phone wishing me Happy New Year, so I go and talk in the toilets to him (the only place I can hear him). Listen to his childhood joy of watching the fireworks at my parents’ house, of it just being another day.

But as I leave the quietness of the toilets I know this is enough, my eyes hurt, my head hurts. I have to go. I tell Dave I am going to sit in the car and he walks with me as we go back to where we parked it and this time I manage to park outside the pub. I put on my 'chill me' music on - Muse - loud enough so that I can only hear that and avoid all the fireworks and drunken shouting in the street outside and just be. 

I feel the shivers running down my spine and sing along to the songs- in my own little world for about 20 minutes.

I still feel I am somehow cut off from the others as they return to the car to go home. I just feel fuzzy to them and like my senses have had to reduce input. The lights are too bright, the voices too loud, so I have to focus on my task of driving home and just switch off the rest. 

I simply can’t cope with people.

As we get back indoors I just want to go to sleep- restart again tomorrow. New Year or not.

The After Effects of Brain Surgery

For some reason I have struggling with the side effects in my head over the last few weeks. I am sure cold weather and being in a cold wind makes everything in my head tighten up and feel number again. When I am out I put my hood up on my coat as much as I can, but that doesn’t seem to be able to stop the tightness feelings.

Then I had a cold and with it sinus pain. I have occasionally had similar for years before- when you bend down to reach something or sneeze the pressure behind your eyes, forehead or back of head increases and all but starts to pound. 

But now this same pain just reminds me of the months waiting to find out what was causing a similar pain in the back of my head and increased dizziness every time I moved, coughed or strained.

The pain I kept asking the G.P about and yet got no answer… 

I can count the number of times I ever had a headache on one hand before I had a brain tumour- so basically having even a mild ache just reminds me of it.

Today I saw a post today on a brain tumour forum where another person is struggling with the dents in their skull seemingly deepening years after surgery– they were told these were caused where they are put in a head brace during their craniotomy. Others also said they had problems with their heads often not even near their surgery site and so I thought I would write a post that may possibly help others realise their symptoms are ‘normal’. Well normal after brain surgery!😉

These are my symptoms today:

• When I wake up my neck feels twisted.
• I still can’t sleep comfortably in many positions.
• My head often gets tight and it feels like the skin pulls.
• I can’t feel much of my head!
• If I get a spot or something I cannot feel it.
• I have two scars, as well as a hole for the ‘drain’ tube during surgery.
• It can itch – what feels like ‘inside my skull’!
• The hair has mostly grown back.
• My head feels SO lumpy- even not near the scars.
• I have an area that sometimes clicks when I rub it, and feels constantly bruised.
• I have tender area on the top of my head.
• I occasionally get sharp pains in my head.

The first I am sure is as I had my neck muscles cut during my surgery and after have been told that some of the muscle has wasted, so I have a big dent in my neck on my right side where the muscle is ‘missing’. 

I know when I stretch the muscle it relieves the tightness a little, but when I wake, at the end of a long day, or am stressed I can really feel my neck muscles ache, the head numbness and my scalp pulling. Sometimes when I go out, I end up doing neck stretches as I am struggling with the aching in my neck, or the fact it feels like my head is tightening up.  

Cold weather definitely makes it worse. 

For months after surgery, no matter how I slept, I kept waking feeling like I had been laying crooked and leaning on my neck wrongly- and it took a while for the feeling to go away. I do still occasionally get this, but normally much milder.

At night I still am not able to lay in some positions without my neck hurting or head feeling tight, just lying on a pillow on my left side feels like I have been laying on a stone after a while – I just have to move. I have tried all sorts of contour and flat pillows, yet nothing seems to get rid of it. 

If I lay on my back I still prop my neck up on my left side with a cuddly toy to avoid me constantly tipping and twisting my neck to one side. If I am lying on my front I cannot face my right for very long before my neck muscles really start tightening. 

Some nights I feel I just cannot get my head comfortable.

I had my greater occipital nerve on my right side totally cut, so I know ‘why’ I have a numb head, but getting used to it is another thing! (See my post on when I first realised I would always have a numb head here) 

When I brush my hair, I get a referred tingle in what normally feels like 2 other places. I have had a heavy object fall on it, bashing my head and yet didn’t feel any pain - it was like it landed in cotton wool.

Just after surgery it felt like I had a 1cm layer of glue left on my head and a constant feeling of numbness. (Part of me really wishes I had known this was going to happen- but then maybe it is better to take one step at a time and not know beforehand?) Now it's 19 months after surgery and most of the time I don’t feel the numbness, unless I touch my head. Then it instantly feels odd. 

I just about have sensation if someone else touches most areas, but I am not at all accurate in pinpointing where the touch is. If I catch my hair or the cold weather ‘gets my nerves’ I have the numb feeling back and what feels like a wig on that part of my head! I can accidentally catch my hair and not feel my scalp pulling or pain at all.

Even if someone pulls part of my hair, I cannot really feel the pain and this strange sensation feels like the area is about 2 inches away from where they are pulling. 

Most of the time I can cope with it fine, but occasionally it upsets me and I get frustrated with it. It’s why I cut my hair after a few months as long hair seemed I was constantly triggering this ‘numb head’ response. Now my hair is growing back, the sensations seem to have improved a little (or I have got used to them!) and the feeling of wearing a part wig has decreased (although certainly not gone). The area that is shown green on the diagram is the worst of it, although the blue area behind my ears doesn’t feel right either, I have a little more accurate, although very dulled, sensation there.  

 

Picture from https://clinicalgate.com/105-occipital-neuralgia/

Oh and I have a really odd feeling every so often, where I lean on a seat cushion, a car seat etc at roughly the central of this green area shown above- and it is like I have just leant on a wooden board and its ‘pressing in’ the whole of my head. Like my skull ‘is’ the wooden board.

Then this numbness goes down my neck and that tightens and the wig feeling comes back- and it always stays for about 5-10 minutes after no matter what I do. It feels so wrong.

I have had some spots near the scar (when the area had been healing) and could only feel a tiny bump with my fingers and then at times a sharp nerve pain somewhere near the area if I scratched it. I have made spots bleed and not felt a thing on my head, just the bump- so every so often ask someone to look at it for me to check there is not a sore area.

When I knew I was having surgery, I obviously realised I would be having a large scar where they were doing the craniotomy and understood I would need a small hole at the front of my head where they would put the drainage tube in during surgery. 

I didn’t realise until after the operation that I would also have an approximately 4cm long scar and subsequent dent in my head at the front where they got the drainage tube in! 

Touching this dent really made me squirm at first, after all it seems I can feel the inner sides of my skull and get my little fingers depth into it. I have been reassured that I cannot damage my brain as it is still a little further in and covered with a tough membrane, but it doesn’t stop me cringing and putting my hood up if I walk in woodlands or anywhere near trees as I am worried I will poke a branch straight in the gap! 

Some times this dent itches, sometimes it feels tender and achy around the area. I can just about feel the ‘hole’ where the drainage tube was now, as sometimes it feels sore and I can feel a dented area there.

The itching has got to be one of the most annoying and constant symptoms. I don’t know that anyone else that has not had brain surgery can understand what it feels like, but my best explanation is it is like getting an itch under shoes that you cannot take off, you can only scratch through the sole and not feel much, or above or to the sides of your foot where the material of your shoe is softer, but it’s not in the right place. You cannot properly scratch it no matter what you do. 

Someone told me they likened it to ants crawling in their skull. There is nothing I can do to stop the itch. Of course I end up scratching it unconsciously, then realising and having to stop myself and all but sit on my hands while I wait for the itch to subside. Sometimes I can itch my neck and it helps relieve some of the feelings. Mostly I just have to ignore it- and (as I was told by my neurosurgeon) hopefully help break the neuron connections!

My hair has mostly grown back. I am told there is no obvious missing hair on my main scar, and in fact the scar is very hard to see. At the front where the dent is, if I pull my hair in the wrong direction I can just about see a patch where the hair hasn’t grown, but no one has ever told me they have noticed it unless I actually move my hair and show them. One advantage of curls!  

19 months after surgery.

From a 30 or so staple surgery, you now cannot see any visible scar, and the dent (from muscle wastage) I can feel is hidden by my hair.

This is the only slightly visible scar - a tiny bald area and dent

Although I have to move my hair out the way to find it!

My head feels like a load of lumps and dents! The area of surgery literally feels like the skull has a plate on it, it sticks out more at the bottom and feels like a ridge to the side.

The natural bump at the centre back of my head feels like I have less of a bump on the right side as my head is still bigger there. I assume they somehow ‘pinned’ my head during surgery- I don’t know if any of my lumps or dents are because of this?

At the back of my head almost under my right ear at what is I assume the back- base of my skull, if I rub this area it still feels bruised and tender. Occasionally I can touch it and it feels like the bone clicks. I try and avoid it!

From the day after surgery I had a really sore area on the top of my head- nowhere near either of the incisions. It felt like my hair had been ripped out and the scalp damaged from the action.

After a few months it still felt extremely tender each time I touched it. Gradually this feeling has reduced and it only annoys me every so often- mainly when I am tired or run down. I have been told this is from the damaged nerve.

Sometimes I get a few sharp pains in my head, mostly at the back where the scar from the tumour is, but occasionally somewhere else. I think it is my version of a headache?

I often still touch my head, I guess in the hope I will get some feeling back. It sort of feels relaxing, yet at some point I realise yet again how little I can feel and I think it gets ‘too much’ for the nerve endings, so I end up just rubbing my head in frustration of the itch and numbness, my hair going everywhere, just trying to get it to work properly. I end up tying my hair up just to pull it all out the way so it dulls the sensations that’s its ‘wrong’.

I have been told that things can still improve, most of them within 2 years after surgery, so I hope it still keeps getting better?  But I guess it’s something I have to put up with as a side effect of being alive! 

I know I was told before surgery that my head would never feel the same again after, but since then I haven’t had much support at all with how it feels and if it’s ‘normal’. I guess the side effects are slightly different with everyone, and sometimes it’s better to live with hope that you will be the lucky one? 

Maybe my symptoms are lucky? I do appreciate they could be far worse.

A Very Happy un-Christmas

Saying you are not going to do anything for Christmas feels a little like I imagine it would be if you had just announced you had given up your well paid and respected job, have bought a camper van and plan to go driving around the world. 

Everyone thinks you are mad, but won’t say it – well not to your face anyway. 

Although I have a feeling more people would understand the desire to travel than the desire to stop the Christmas ‘celebrations’? But I didn’t celebrate the 25th, and (very surprisingly for my past Christmas record) it was a lovely day.

I had told the kids (and Dave) ages ago that I was not going to be celebrating it, but that they could do what they wanted to as I would not stop them. The kids chose to either go to their partner’s family, or my parents, and have Christmas with one of them. There was a part of me telling me that this shouldn’t be right- that I am somehow letting them down and ruining Christmas for them. But deep down I ‘knew’ it was fine, despite what society may think. 

I was doing what makes me feel best and with that I am sure what was best for them too. Plus if there is one thing I want my kids to learn is to do what brings ‘them’ joy and not what is expected or wanted from them. Loving and honouring themselves.  

Plus why would they want to be with me when I am just putting on my fake ‘oh isn’t this fun’ expression, hating every ‘celebration’, while silently just wishing the day would fast forward? I knew as a child when my family were stressed so why wouldn’t they too? I don’t want that for them.

I didn’t buy Christmas presents, nor send any cards or say Happy Christmas to anyone.

I did buy each of my children a fluffy clothing item for winter solstice and gave it to them on the 21st. Plus for Roan (who is only 11) I got a PS4 game he wanted to give him on Xmas eve (I felt too unkind giving him nothing when I had brought presents for all the older kids when they were his age). But that was it.

No stressing over shopping or waiting for items to arrive in the post, no making myself skint and us struggling to buy dinner and pay the bills for the next few weeks just so people can have an extra present they don’t need which is supposed to somehow be a sign of our love.  

As society said so.

So we took the kids to my parents on Christmas Eve, I still got given some items when I requested not to have anything - so took them home with me (and which if I am honest has annoyed me as I said not to do so as I wouldn’t be buying anything back- but I did tell them, so I guess it is their choice if they still feel the need to buy things) and the day was about as Christmassy as I could manage. Many a time it came too close and I wanted to walk away, and I did escape for a walk in the woods with the dog. But I managed it and we left before dinner. I then got a headache coming home in the car and felt I needed to sleep to ‘reset’ myself after we got back. I don’t think many people can understand how physically draining a supposedly fun family experience can be?

My parents actually gave me a jigsaw puzzle, so that evening while Dave was watching some junk on telly, I numbed my mind into a meditative state by jigsaw! I was totally in my own little world for a few hours- just what I needed. 

On the 25th we didn’t wake until after 11, got up and took the dog for his favourite walk in the local woods, had some lunch and I fell asleep again! 

Dave watched some TV, cooked dinner (yes we had a delicious bean casserole with lamb noisettes) then later went over a friend’s house to see them. We spoke to each of the kids – who all seemed to be having fun- and I was just glad I wasn’t there. Not pretending.

I didn’t miss any of it, my stress levels have been half what they are for a normal Christmas, I don’t have to take anything back to the shops.  Put decorations back in the loft or tidy mess. I still have the same amount of money in my bank account. I didn’t have to pretend- I could be me and no one moaned at me for that, and my kids all did what they wanted.

A no stress, un-Christmas… I’m repeating it next year.