12 HOURS IN SURGERY!!

0 DAYS TO DBS

 

I need to start this blog with honesty because I feel if I don’t mention this I am not being truthful to my story. Maxine and I had decided to separate, this decision was taken a few weeks ago but she wanted to be involved through my operation because she had attended all my hospital appointments in preparation for this.

We have to live in the same house due to circumstances until end of July so it would be childish of me to say I don’t want you involved. I would be lying if I said this didn’t have an effect on my state of mind but things happen and I feel we are dealing with this the best way we can.  Obviously not having that closeness of a true partner was going to make this experience a strange one but Maxine was very supportive throughout my stay in hospital.

So its Monday 23^rd 1.15pm, Maxine and I put my case in the car and head off for the QE Hospital, Edgbaston, Birmingham.

We arrive at 1.45pm approx. We found our way to the second floor and the Welcome Short Stay Ward reception. We sat there for about half an hour before my name was called. A nurse popped her head around the corner and asked me to follow her. She took me into a small room and carried out a few basic checks, weight, height and blood pressure, I did say at this point blood pressure! “I think I can guarantee you it is High” because it was about now that I realised this DBS was really happening!

The Nurse said it was high but plenty of time to get it down. There appeared to be some confusion about my pre op paperwork?

 

We walked back to reception where I sat back down for about 10 minutes before we were shown to the ward.

The ward was very spacious and felt comfortable and I was seen by a nurse almost immediately and allocated my bed, number 6.

 

 

 

She asked me my details and left us for about 10 minutes whilst she processed my admission to the ward.

It soon became apparent my pre op notes which included all my pre op results had been mislaid or lost! Max and I just looked at each other in disbelief as the nurses started carrying out all the tests I had already gone through!!

I began to wonder had I made the right decision?

 

Max told me not to let it worry me and be positive, they finished the tests. Finally my ID in the form of a wrist band, I am now officially hospital number V477020.
I posted this picture on facebook and somebody (sorry can't remember who) said I've got your number! lol

 

 

 

Max stayed with me until 6pm making sure I had everything I needed and even shared some of my first hospital meal (Chicken hotpot with veg & chips followed by Jelly & ice cream)…….Let’s just say it was okay. I walked down with Max to see her off knowing my 3 children were due up within half an hour so I said goodbye to Max and sat outside having a cig!

They came about 20 minutes later and we went up to the ward. It was a very important visit for my youngest daughter, Penny because she was going on holiday the following day when I would be in surgery. The holiday was booked months ago and I know she felt guilty that she wouldn’t be there for me after the operation. I would never have made her feel guilty and between us we would keep her informed. She bought me a lovely card and wrote this inside

 

Father

Hope everything goes well

I’ll be thinking about you the whole way to Croatia

Sorry I can’t be there

Love you so much Daddy

Lots of Love Penny

Xxx     xxx      xxx

 

They left at around 8pm and it was at this point I started to feel very emotional. I knew Maxine and Rebecca, my oldest daughter was coming up in the morning but I wouldn’t see George my son or Penny before my operation, I know it was stupid to think but if I didn’t get through this surgery that was the last time I would see 2 of my beautiful children! My emotions were running away with me and getting worse because I was on my own.

Just before I got into bed I did something I had never done before and I posted it on facebook, I don’t know why I did that? But I did so I have to mention it now.

 

I updated my status at 22.23 on the Monday night

 

“I’m not a religious man at all and I have never believed in life after death. But I’ve just said a prayer to the big man and told my Dad who passed away 27 years ago I’ll see him in a few years I’m not ready just yet!!”

 

Thank you to everyone who sent me messages throughout the day, they meant a lot to me and helped me get prepared for this

I messaged Max a couple of times and received a lovely text from my son George before I went to sleep.

I had a pretty restless night’s sleep waking every hour or so or being woken by a nurse who wanted to check blood pressure and temperature. The nerves were at an all-time high at 5am I was desperate for the hours to disappear and just get this done now.

As expected the time dragged up until 8.30ish when Rebecca and Maxine arrived. Just after they arrived my anaesthetist came to see me. A really nice guy who talked us through everything and gave me a lot of confidence I was in safe hands.

It was just after he left my new Parkinson’s nurse Jamila arrived, she asked if I was okay and ready, I think I reluctantly replied “yes, I think so!” She asked me which side of my chest I wanted the stimulator battery box in, I said the Left, don’t know why just felt the most comfortable? She drew an arrow on the left hand side of my neck so the surgeon knew what side to run the wires down.

 

 

 

 

 

 

So that was it I was ready for the off. Becky and Max gave me a kiss and I was wheeled out of the ward on my journey to my first stop the MRI scanner.

Becky and Max went out of the ward via another exit both a bit upset soon to be laughing as the exit I had been taken out of met up with them!!! Tears were wiped and as I said we all laughed which was good for all of us I think. They followed me pretty much all the way to MRI when I gave them a last wave from my bed.

 

I was pushed through the doors into the scanning area where there seemed to be so many people waiting for me I felt quite important! I was transferred onto another bed, presumably the one I would spend the rest of the day on. I had a nurse asking me lots of questions just confirming I was me I think?

After about 15 minutes I was wheeled into a separate room where I met my anaesthetist again and I think there was another 2/3 staff in there. I thought I was firstly going to have a cage fitted to my head, followed by a MRI Scan, and then I would be anaesthetised. I was wrong I was going under now and they prepared me by putting a needle in the back of my left hand.

The anaesthetist connected a syringe to it and my hand went cold, I was gone and unbeknown to me wouldn’t really be awake or aware of anything for another 12 hours!!!

 This is the time when it’s not about me, it’s about my family and friends who have to do the waiting for news and my god they did their share of it this day.

 

I remember, albeit vaguely being brought round by my surgeon who was asking me if I was okay. I found out later this was about 6pm, approx. 9  hours after going under. I replied to the surgeon by trying to tell him a couple of words, these were the ones Maxine and I had agreed I would relate to her after the operation so we knew my memory hadn’t been affected.

The words were the name of a place where we had our first drink and chat together, the name was Bassetts Pole. I recall the surgeon struggling to understand what I was saying then he recognised what I was mumbling on about, he said is this a code between you? I said yes

I had to hope this had got to Max, I found out much later it did.

 

The surgeon had called Max and gives her the code and told them that I was in recovery and all had gone well. Apparently 10 minutes later I suffered a massive Haematoma in my chest (a bleed) that swole to the size of a football. I was rushed back into surgery and spent a further 3 hours under my second dose of anaesthetic.

 

I eventually woke up in Intensive Care Unit 12 hours later and was welcomed back my lovely daughter and Maxine, I was so pleased to see them.

 

More to come!

 

 

 

HAD TO BE DONE!

ONE MORE!

Maxine, Beccy, George, Penny, Mom, David, Ciara, Innes, Stephen, Stephanie, Nicole and all my family and friends ( TO MANY TO LIST)

I LOVE YOU XXXXXX

SEE YOU AFTER

MAGGIE - MY NURSE

1 DAY TO DBS

This will be my last blog until sometime after the operation because I won’t have access to my lap top. I could probably do it on my phone but I’m not that clever!

I didn’t have a good night knowing I was going in to hospital today and when I did sleep Parky was wanting a scrap, I tried to walk away but he was having none of it.

He did me a favour though because when I woke at 6.30am aching and in pain I knew my decision to go ahead with this operation was the right one.

 

There is a group of very special people I haven’t mentioned up to now. They are the Parkinson’s Nurses. We have all heard of Macmillan Nurses who do a brilliant job caring for people with cancer but Parkinson’s nurses don’t get any publicity so I want to talk about them.

 

I apologise because I can’t remember the date when I first met my nurse but I will never forget how lovely, caring, compassionate, knowledgeable and sensitive she was towards me, my wife Kaye and my condition.

Her name was Maggie Johnson, who I have now known for a number of years. The day we met she visited our home which was a lot more relaxed than going to a hospital or clinic. I think she spent a couple of hours with us talking about the condition, how we both felt, how the children was about it and all the other related issues medication, treatments and the future.

What I found really special was the focus on how my wife and children was in dealing and accepting the condition. People forget that your immediate family is affected almost as much as you and it is vitally important they are involved and informed. Maggie did this so well, I’ll never forget how at ease I felt when she said “It’s not all about you Rob”

 

This was the start of a fantastic relationship with a true professional who knows her job, is always there for us and someone I feel I can talk to about everything. Even when I had gone through my marriage break up and she met Maxine for the first time she was never judgemental and has become very good friends with Max.

As I said Maggie (and I’m sure all the Parkinson’s nurses) are very professional and caring but I got a very special one!

My life with Parkinson’s would have been very different and difficult without this lovely lady and like all the nurses in this world, they are “Angels” who do a wonderful job with little recognition.

 

SEE YOU AFTER

 

Don’t forget Tuesday evening NOBBY !!!

Written Confirmation at last!!!

2 DAYS TO DBS

 

Sorry, missed a day yesterday, I spent some quality time with my loved ones in Stratford.

 

Had a good night (piss up if I’m honest ha ha) up The Yenton with some good friends. It was a shame some people couldn’t be there but I know there were reasons you couldn’t make it.

 

Anyway 2 days to go and YIPPEE, guess what? I got a letter from the QE Hospital yesterday confirming me to go in Monday 23^rd at 2pm. At last I have written confirmation, I can relax and stop stressing.

 

Oh, hang on, wait a minute, a second letter, you wait all this time and like Buses, 2 come at once! I know what this will be, an apology for all the confusion, Feeling Satisfied J

 

So I open it …………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………..that’s enough anticipation dots, I’m trying to give a little suspense to the blog, ok so I’m no Alfred Hitchcock!!

 

You Ready?

 

Well it wasn’t an apology, how silly of me to think this, it was another confirmation letter, and yes you guessed it, to go in Tuesday 24^th at 7am

 

GOD, GIVE ME STRENGTH!!!

 

It’s sorted, I go in Monday 23^rd June at 2pm and Operation gets underway Tuesday morning. I will be indisposed for approx. 8 hours.

 

I read a story earlier about a guy who went through DBS and so he and his wife knew he had come through without any memory loss, they agreed a word/phrase that he would say to her after the operation.

I loved this idea and want to do similar so I have agreed a word with someone for after the op

 

 

 

 

I would also like to do the same with you. So after my op, sometime on Tuesday evening I am going to post a name on Facebook. Then you’ll know the grey matter is intact, well as intact as it is now?

Don’t laugh at the name, this was a very special individual to me and the kids, it was our cat

 

NOBBY

 

Yes I know your laughing, but that was his name and that’s the name I want to use so look out for it on Tuesday. If it doesn’t appear, well I will definitely have forgotten the cat lmao but hopefully not to much more, fingers crossed.

 

DBS Surgery is NOT a cure!

4 DAYS TO DBS Surgery

Well the QE Hospital admin staff certainly is surpassing all expectations. They should be awarded the UK Title as

“THE MOST DISORGANISED USELESS DON’T KNOW THEIR ARSE FROM THEIR ELBOW DEPARTMENT IN THE COUNTRY”

I have lost count of the number of phone calls now from various people at the QE. Everyone telling me a different day or time I should go in. We are now told to go in on Monday 23^rd at 2pm? I’m not holding my breath just yet, there is while to go!

OH and still nothing in writing for the biggest hospital appointment of my life!!!

 

I want to talk about DBS surgery and explain what it is actually going to do for me. This is important because I have spoken to people about it who think it is a cure – IT IS’NT but everything will be explained.

Parkinson’s Disease is a debilitating, degenerative condition and currently there is no cure. There are many types of medication that can control, stabilise and help the condition. Unfortunately because the condition is constantly degenerating the medication generally only has a certain working time span (I was told about 10-15 years)

A very important point to make here is never forget the amount of people, organisations, charities and time being spent on developments and research to find a cure. And if not a cure at this stage exciting new medication, surgeries and treatments.

 

WHEN I WAS DIAGNOSED I WAS VERY NIEVE AND DIDN’T CONSIDER ANYTHING THAT WAS GOING ON OUTSIDE OF MY WORLD. I THOUGHT MY LIFE WOULD BE OVER IN 10-15 YEARS!!

LOOK NOW I’M GETTING SURGERY THAT WILL MAKE A BIG DIFFERENCE, HOPEFULLY GIVE ME A BETTER QUALITY OF LIFE WITH MORE STABILITY AND LESS PAIN

 

Deep Brain Stimulation Surgery (DBS) I am not going to attempt to describe the technical detail of DBS, should you wish to you can get very detailed explanations on Parkinson’s UK or Parkinson’s Disease Foundation web pages.

 

The surgery in my case and I see it is a replacement for the medication I am taking. My medication has increased over the years as its effectiveness has worn off. 2 years ago I was taking a stalevo tablet about every 5 hours, I am now taking them every 2.5 hours and sometimes less.

The problem with this is my day is peaks and troughs, no stability in the control of my issues through the medication. If you recall I discussed my ON/OFF Times earlier.

 

If I take a tablet every 2.5 hours and I am awake for 16-18 hours a day that breaks down to 7 x 2.5hours.

If I get 1.5 hours in each x 7 that means I have 10.5 hours of ON time in my 18 hour day

 

As I said the problem is it can be all over the place. The surgery we hope not only replaces the medication (maybe not completely) but stabilises your condition. We are also hoping the OFF time will reduce by circa 50%.

This could mean from my 18 hour day I could get 14 ON hours which would be wonderful. The shortfall would be managed with some medication.

 

Hopefully that has explained why the DBS surgery is a good option for me and worth any risks that are associated with it.

 

BIT OF FUNDRAISING

5 DAYS TO DBS Surgery

Well, I said yesterday, I was hoping to receive the letter confirming the operation details for next Tuesday. It didn’t arrive but I managed to speak to my new Parkinson’s Nurse Jamila this morning. She explained there are a few issues with administration currently.

The good news is she said it’s definitely going ahead and everything is booked. She is going to call me on Friday with times etc.

I came off the phone happy everything is set, and then I felt blind panic, REALITY HIT ME, ITS HAPPENING, WE ARE ON! I don’t know if I should laugh or cry SO I’m doing both!!

Funny isn’t it, you want something so much and when you get it you begin to doubt it ???

I said I might just go back at times, well this is one of them. I want to mention a fundraising event we did in May this year.

When I heard I was accepted for surgery I decided I wanted to organise a fundraising event for Parkinson’s UK.

The reason for this was firstly because I had been accepted and it was 10 years since my Parky’s journey started. (If you’ve been paying attention 2004 in Majorca)

Parkinson’s UK had helped me a lot over the years, firstly with my benefit applications and for general advise or just to talk to.

I know it’s a cliché but I wanted to give something back.

The last time I raised money for them was 8 years ago when George (my son) and I did a 13,000 feet Tandem skydive when we raised over £1000. If I can find the DVD I’ll try and get it on Blog!

I decided to organise the event at my local pub The Yenton. I got a mate, Paul Kelly involved, and we sorted the room with Mick the gaffer. We put on a DJ and Karaoke and sold entry tickets.

On the day we had a raffle, an Auction and a few other money raising ideas. The pictures tell the story!

This was how we advertised it and we sold the 120 tickets within a week!

THE YENTON

CHARITY EVENT DISCO/KAREOKE TO RAISE MONEY FOR PARKINSON’S UK

SUNDAY 20^th APRIL 3PM

Tickets £5

Rob Dyer has had Parkinson,s for 10 years, diagnosed at just 41.

It is a debilitaing, degenerative and frustrating condition that can effect anyone at any age!

Rob is having Deep Brain Stimulation Surgery this coming June at the QE Hospital, Birmingham. He wants to give something back to the charity that has helped him.

ANY SUPPORT YOU CAN GIVE WILL HELP PARKINSON,S UK IN FINDING A CURE

                                                                       Contact Rob or Paul Kelly for Tickets                                                      

 

PICTURES OF THE DAY

 

These are the Dancing Girls! (The Glampussies) L to R Bernie, Yvonne, Maxine, ME, Caroline & Becky. I took the opportunity of a photo before they began strutting their stuff!

 Me with my eldest daughter Becky and son George

My 2 lovely girls Becky & Penny

 Having a good time!

Beccy & Paul who really helped me to organise the day - Thanks you 2

Elozabeth (my 3rd Daughter) me & Maxine - Oh and Paul getting in on photo!!

AND THIS IS WHAT WE RAISED £2,036.97

 

THANK YOU TO EVERYONE

 

MY BLOG HELPS JEANNETTE

6 Days to DBS – I feel a couple of Blogs today you lucky people!

 

Well, this time next week it will all be over, my operation that is!

 

Today has started as it did yesterday, awake at 4.30am again!! At this rate I won’t need a general anaesthetic next Tuesday, I’ll be that knackered I think I’ll sleep through the 7 hour operation!

 

I am desperately waiting and hoping for the letter from the QE Hospital confirming everything. I know this is one reason for my sleep deprivation. There is always a chance with the Neurological Brain surgery team something could happen, as in priorities and my date gets moved. I really hope not I couldn’t go through this again!

 

Anyway tablets taken at 5am, cups of tea and coffee and fags done and 25 minutes of off time passed. I’m operating as normal again.

I mentioned yesterday about taking Paracetamol & Ibuprofen and I said I would explain why I take these some mornings. Normally I sleep quite well and deep but Parky does play a nasty role during the night on occasions.

I am lucky because I sleep through it but we occasionally have a serious fight where he attacks my limbs and muscles pounding me. To defend this I twist, turn, tense up and only realise how much he has hurt me when I attempt to get out of bed and this is when I need the pain killers.

People with Parky’s will also recognise a night with a continental quilt that feels like it weighs a ton!

 

7.15am Starting to struggle, arm has gone limp and face has gone! Waited until7.30 took tablet. Bad off time 45 minutes before able to move arm comfortably!

 

I went on FB and looked to see how yesterday’s blog had been received. There were lots of likes, shares and comments and a particularly poignant comment that I have to share.

Jeannette is a lovely lady I used to work with. I knew she was following my blog but when I saw this, I was overwhelmed that my blog had impacted on her like this!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10am Here we go again. Typing away hand just stopped,  tongue and bottom lip dropped!! So frustrating, time for a drink and a cig. Not that bad 20 minutes off time.

 

You may be wondering what I mean by OFF time. For people with Parky’s and the medical staff, doctors, nurses etc. OFF time is when the condition is effecting you in whatever way you suffer, stiffness, numbness, shaking, dyskenesia, freezing etc.

Your ON time is when medication has kicked in and your feeling okay