My Journey and the stages of grief that you go through before you come out the other side.

Monday, 23rd April 2018 was like any ordinary Monday morning or so I thought. There was the usual sound of the alarm clock that had been dismissed three times, before I finally kicked the sheets back and rose up out of my comfy bed. I headed sleepily towards the bathroom and then downstairs to make my first cup of tea of the day. The day was clear and bright. I woke the family, jumped in the shower, made the pack lunches, then I took the dogs for a walk…but something didn’t feel right.

7.45 am – It was time to go to work.  I locked the front door to my house, my daughter Crystal was already in the passenger seat of my car (which I might add – made a change) and off I drove out of the drive way and down the road, heading in the direction of Crystal’s high school. Her school was en-route to my work and as the traffic always came to a standstill at some point near the school, Crystal gave me a kiss goodbye on the cheek, reached for her bag like she had just carried out a ’smash and grab’ and sprang out of the car, whilst we both wished each other a good day with a wave.

I had another ten to fifteen minutes to battle through the early morning traffic before acting like a heat seeking missile and to try and drive into a gap for a parking space near my work. By this time the sun was out and the hustle and bustle of the busy day ahead was gathering momentum. I parked up and with a quickened pace, headed towards the office. Once inside I would meet and greet my fellow colleagues.  Before long I was sitting down with them all to have our ‘Morning Meeting’ held daily by the Branch Manager. During the meeting and listening to the action plan of the day, it struck me that I felt like I had an eyelash irritating my left eye or maybe a blob of mascara had dropped in it. Well what- ever it was, it was seriously annoying. My inner voice kicked in – ‘Come on, wrap this up!! I need to look in the mirror to see where this eyelash was’.

Nothing, not a Dickie Bird! No eyelash visible, no blob of mascara, nought there. All I could see was my green eyes, staring back at me from the compact that I was holding in my hand. Oh well, let’s get too it. I opened up my computer, looked at my scheduled appointments in the diary, worked through my emails, then picked up the phone and got on with my day, which I might add was full on. Every day in fact was full on and I loved it.

I always lived a hard and fast life when it came to work. Never batting an eyelid at working all hours and weekends, not a problem. I have always been very active, taking care of my children to put a roof over their head and food in their tummies. I have three children and as I write this, two have flown the nest and one started college last September 2019. Like most people, I’ve had my fair share of crisis, but never expected the next chapter of my life to be such a complete and utter roller-coaster. Buckle up, strap yourself in, because the Wave of Life was unexpectedly about to hit and I was in for one hell of a ride!

All that week, I was plagued by an annoying, irritation in my left eye and by the Friday morning (27th) at our meeting I could no longer bear to look at my Branch Manager (no offence intended – it was not his doing that I was in agony!) My thoughts were ‘come on wrap this up’! With that I ran into the toilets, was violently sick and suddenly I had an almighty migraine. I returned home, got into bed and slept. That weekend my son and his girlfriend were moving out of my house. They had bought a flat and I had offered to help. Despite the crunching pain in my left eye, which I might add was unbearable, we all tackled the move. For me it was absolute hell. By Sunday evening the pain was so severe, I thought my eye might burst. I had lost count of the amount of pain killers that I had downed and was in the mind that if it didn’t subside within the next half hour, I was going to A&E. Fortunately for me the pain killers knocked me out until the morning.

Monday morning (30th) arrived and I had double vision in my left eye. I carried out the morning ritual and went to work. Whilst there, I informed work that I would be late in the next day because I needed to visit the doctor to check out the double vision that had now appeared. My appointment was at 10:00 am. The doctor took one look into my eyes and told me to go to the hospital straight away and that she would inform them that I was on my way. With that, off I went and within an hour or so I had seen a Consultant and waiting for an MRI Scan. The results quickly came back that I had a Pituitary Tumour and that they needed to operate as soon as possible, for I would lose my sight.

When things like this happen to you, everything becomes so surreal. It’s like being in a Vortex, surrounded by all this noise and chatter – it’s like you are not really there. You have thoughts that they have made a mistake, this seriously isn’t happening and you question the Why and wherefore’s. Even when you tell your family, work colleagues and friends over the course of the week, it’s like you are talking about somebody else. It is so hard to comprehend and it takes a while to sink in, I mean really sink in.

I told my Manager that I needed to stay off work because I was not allowed to drive and that the hospital had given me a course of medication in preparation for my operation. The course of Hydro-Cortisol was to help my body prepare for the shock of surgery. Really – there is nothing that prepares you for the shock of surgery. During the wait, before my operation, my vision was rapidly declining and the day of the operation soon came upon me. When I think back … in my mind, this operation was going to be like having my tonsil’s out and I even said to my Branch Manager that I would be back to work probably in a week or so. I had been given very little information on the procedure, only that they were going up into my head via my nose.

In the weeks leading up to my operation, I needed to prepare myself. I constantly received reminders of this pending scary predicament that I was facing, day in and day out. The stream of cards, gifts, friends and family calling in on me or via the telephone, were wishing me all the best. Even people I haven’t spoken to in years pop up out of the woodwork. They were all asking me how I was feeling and coping. Actually, I just wanted to tell them all to go and do one! There is nothing worse than listening to the constant barrage of well wishers, whilst having to get your head around the fact that you are having major brain surgery and you are scared out of your wits. WARNING, WARNING – This is when it really hits home and you experience the anger and question the Why.

June 4th 2018. My Mum and Dad arrived in readiness to hold the forte at home, whilst I would remain in hospital. The Eve of my surgery was the worst. In fact I couldn’t even go to bed. I had this mad impulse to stay up all night, just so June 5th would never arrive – but as I looked out of the patio windows the sun slowly began to rise along with an intense sickening feeling of dread rising in me. For the first time in my life, I thought that this was possibly how a person may have felt on the morning of their execution.

So now I have come round from the operation, looking like some alien creature sprawled out on a hard sterile bed with two long bungs about 8 inches in length running from the now closed up hole in my head and coming out from my nostrils, with a drip tray underneath them (just in case my brain seeps out, I assumed). Numb and high on Morphine, unable to communicate and feeling totally sick and disorientated, I laid there wondering if there was anything left of my authentic self. I felt like I had been abducted and had some strange experiment carried out on me. Wired up and unable to move, my thoughts were – am I alive or is this all just a dream.

The next 24 hours were critical – I was closely monitored every two hours. A nurse would check my eyes by shining a light in each one and checked on temperature and blood pressure. The water I drank had to be measured out beforehand and how much I pee’d was monitored, plus the nurses were also waiting on a number two bus to come along that required an MOT check to confirm that at least my digestive system was still functioning.

The Surgeon popped in to let me know that he believed the four and a half hour operation, whereby I had been strapped to the operating table was a success. Apparently, the tumour had been in throws of cutting off my blood supply to my left artery and I could have dropped down dead at any moment. In his opinion, I was lucky to be alive, but at that present moment in time, I didn’t feel very lucky. I actually thought, it would have been easier to have died, seeing that he had also informed me that I should expect to go through this operation again, in seven or so year’s time depending on how fast my tumour re-grows. The Surgeon had also given strict instructions that I was not to have any stress. Obviously, my life had other ideas and I was already signed me up on that endurance circuit, of which I didn’t particularly want to participate, but given no choice.

I ended up staying in hospital for several days because the pain in my head, neck and shoulders was unimaginable, despite being told that I should expect to be out within two days. The journey from the hospital in Southampton back to Bournemouth was horrendous and my brain struggled to take it. I went straight to bed as soon as I arrived home.

This was the hottest summer on record since 1976, when Wimbledon Common caught a-light from the soaring temperatures. I had my own soaring temperatures going on. Despite being in the coolest bedroom in the house, with the blinds closed, a cold flannel to my head for most of the time, I was cooking from the inside out. Hot Lava flowed around my body, the intense heat moving up into my head and across my face, whilst I shivered under the duvet covers. The Hydro-Cortisol medication was making me feel sick, the pain killers having no impact and the intense feeling that my body would spontaneously combust at any given time, was absolutely unbearable. This continued for several weeks or so after leaving the hospital and on two separate occasions I ended up back in hospital as an emergency admission. The second time around I was given a Lumber Puncture and sent home with more pain killers.

By now I didn’t recognise myself. Who was this person staring back at me in the mirror. The person I had known all my life had just up sticks and walked out.

Three months had passed and I had had my four week Post-Op check, blood tests, etc, in between and still the old Caroline had not returned. I was beside myself. Before all this, I had been working as an Estate Agent and loving the job. I started my day at 8:30 am and most nights worked late and I still managed to fit my housework, shopping, cooking, cleaning, washing, gardening and anything else that I had to do in to my week.

But now I couldn’t get much done at all. My head hurt constantly, my neck and left shoulder brought me nothing but pain. I couldn’t even wash my hair as the muscles surrounding my head and neck had totally constricted up and the head spasm’s constantly kicked off, along with the feeling that my brains were being fried. I thought that I would have been back to work by now. Some people had said that it should take about six weeks to start to feel better, but that certainly wasn’t my case. By now I was in despair. Bills were mounting up, leaving me with no choice but to borrow on my credit cards, which were already near to maxed out due to doing up my house. I had every intention to be able to pay them off, I never dreamt that I would find myself in this position and so eventually my family had to step in. The Health Insurance Policy denied my claim and I was too ill to fight it. The £92 per week Statutory Sick Pay was just covering my food, leaving nothing for the mortgage, credit card bills, running the car, etc, etc.

There was I, alone, my livelihood gone, my purpose, my goals, my aspirations, myself had disappeared, like all the well wishers before my operation. Only a true handful of friends and a Mum and Dad that had been so loving and supportive, that at the time I just wanted to reject. I felt hateful, I didn’t feel I deserved love, I didn’t want it and I certainly didn’t want to be trapped in with this person. Every day I was waking up to the feeling of being whacked over the back of my head with a plank of wood. The relentless head spasms, that felt like someone had just driven a screwdriver or axe into my head, which occur out of the blue, sharp, extremely painful and bringing me to tears. The amount of times I could be sitting or walking – doing things that I love and Bam! It’s actually like being a Voodoo Doll and being tortured at the same time. Day in, day out. You can’t escape! Even when you finally fall asleep, you get woken up by the spasms, it’s as if someone is lying next to you and punching you in the head.

Every day I would tell myself to pull it together, that I was fit and healthy, that I was healing and I even held in my yelps when I was under attack. By the August I had joined a Network Marketing Company to try and focus on making some money working from home. But in reality it was not possible. My heart was in it but my body was just not able to cope. So I just kept up-to-date with all that was happening via the internet and went to a regular monthly meeting for an hour. It gave me a life line in a way, because I met a lot of like-minded, friendly, helpful people and I loved it. Things started to improve a little and so by the November, with a more positive attitude, I tried to return to work a couple of hours every other day, but eventually I had to come to terms with the fact that just a few hours was too much. I would suffer with the head burn ups and the spasms throughout the day and after those few hours, I would return home, make a cup of tea, sit in the chair and before I had even taken a sip, I would be out like a light within seconds – exhausted. The amount of times I would get woken up with a start, as the cup that I had held in my hands fell to the ground with a smash. My daughter Crystal would help to make dinner and so we lived on a lot of Beans on Toast. I was just too exhausted to eat, wash, even stand up to cook the majority of the time.

I struggled with my new business venture, gathering up friends and family, whilst I sought Physiotherapy at the hospital, which didn’t help. All that happened was that the constricted muscles in my neck and head tightened up more, causing even more pain. I was then referred on to see a Spinal Specialist who informed me that he couldn’t help and believed it to be Occipital Neuralgia.

By the beginning of March 2019 I saw another Neurologist at Poole Hospital, who injected steroids into my brain under the skull at the back of my head, with a very long needle. This intervention was to try and treat Occipital Neuralgia and relieve me of the pain, but in fact it made it worse. After that initial treatment, he urged me to have another attempt just in case it worked the second time. I had it done in the hope that it would and as such, it just finished me off. My condition worsened and I wasn’t able to return to work. I was now heading into …

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#Warning #Breaking Point #Dark Night.

One year on from my operation and four months before my birthday, I was still no further forward with resolving the pain. By now I had read countless books, articles from the internet, watched You Tube videos and been in contact with various people, forums and organisations to try to come to terms and cure my condition whatever that may be.

My mum from the very beginning of my diagnosis telephoned me almost every day with the purest of intentions, in the hope that I was improving. It was coming up to my 50th Birthday, Mum and Dad wanted to buy me a special piece of jewellery and had suggested that I should try and go out and have a look to see what I might like. In all honesty, I didn’t want anything and I told Mum that. They had given me so much with their love and support already and besides I wasn’t really able to get out around the shops in any event. So over the weeks leading up to my birthday, I was becoming more and more frustrated with my mum banging on about this ring or necklace or whatever. Despite telling her that I wasn’t interested, it was falling on deaf ears. In my mind, if I was to have something, I wanted to choose it when I was better, giving me something to look forward too. Because let’s face it, there wasn’t much else. My life was in limbo, I wasn’t working, I couldn’t get a mortgage now, therefore I couldn’t move, I was on my own, heading for 50, Caroline (myself) had disappeared and I was living with this Alien person and being tortured on a daily basis.

What the …..Why do you not understand!!

Some weeks before in the run up to my 50th, I was sitting in the back garden, again in tremendous, excruciating pain and crying. It hadn’t been that long ago that I had spoken to Mike and he confirmed that he was intending on visiting me within the next few weeks and then he would continue on his journey, out to his second home in Bulgaria. Unfortunately, he didn’t make it. Before he could make good in roads on his journey down South, he had a massive heart attack and died. 

I didn’t want to celebrate my birthday. In fact I wished that I had never been born. I had the last 50 crap years with one thing and another in my life and I wasn’t looking forward to the next however many years I had left to endure. I didn’t want to celebrate it and I told my mum, dad, my children, brothers, friends, that I would not be around on that day, as I had intended on going away. A few days before the big day, my mum insisted that they come up to give me my present and one from my brother. It had to be before, just in case either gifts needed to be returned or the 30 days return would expire. Well they arrived, I opened my presents, tried to look happy and grateful and went through the motions. This was the worst day ever and I couldn’t wait for it to be over, just so I could just let out my tears.

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On the morning of my birthday, I woke up to bunting and presents that I did not want. I opened them with about as much enthusiasm as a wet floor cloth and asked my two daughters to take the gifts back. I was getting ready, when my son pulled up on the drive and entered the house wishing me a Happy Birthday and presenting me with a present. I just put the present on the table and went upstairs to finish getting my coat to go out. My son asked me if we were all still going for a meal and I responded with a No and said that I was off out.

I felt like crap, I felt like I could really punch someone, I felt angry, I felt ungrateful, I felt disgusted with myself and I hated Life! I never returned home that night and when I finally did, I apologised. I had spent my birthday with my close friend. She just knew exactly what to say and calm me down. I just let rip – all that I had been feeling came out like the firing off of a Machine Gun, telling her how I was sick of feeling lost, sick of being a burden, sick of feeling angry, sick of being sick and that I wanted it all to stop. I was going through my darkest night and thankfully this was just the kick up the jacksie that I needed.

Some weeks passed and I was going through a transformation. I was trying to come to terms with this person that had taken over my body and grown so much that Caroline couldn’t come back now even if she wanted to. The spasm’s were still there, the head burn-ups, the feeling that my head had been chopped off and stuck on a spike and my shoulder had been dislocated, were haunting me every day. I was at my wits end, but I was now determined to crack this bitch, because from now on, I’m not taking any more of this! I walked into a Mindfulness group in Ferndown, on a cold and foggy October 2019, Monday morning crying and asking for help. It was either that or find a gun and blow my head clean off. I opted for the less messy option of course.

The group was so kind, compassionate and supportive and immediately I was able to open up and tell them my story. I explained that I didn’t know what bought me there, but so far every medical and non medical intervention that I had sought had not worked. I felt that I had regressed into a past life and maybe become stuck when I came out from surgery. I was half expecting everyone to laugh, but looking at them through my tears, all I saw was love.

The weeks and months that followed gave me strength, I was no longer looking down at the abyss every day and gradually after going from seeing a Cranial Osteopath, Chiropractor, Reiki Master, Float Tanks, Emotional Freedom Technique, Accupunture, Lazer Treatment, trying anything and everything, reading up on various Mind techniques to self heal, I soon found myself using coping mechanisms.

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Finally, one day the sun comes out.

I have had to really adjust. I’ve gone from working like a Tornado to a Sloth. I always had demanding, stressful jobs where I had to meet deadlines, working other jobs evenings and weekends. I had an immaculate home, now it’s just clean and tidy. It’s hard to go from one extreme to the other, but in the end you just have to stop fighting it. Acceptance is the only way you can grow yourself out of your situation. You will find this journey so hard, but stay in there. Hold on as Nothing Ever Stays The Same. One day you are in this black hole and the next, the Sun has come out and dries those tears.

During this journey I have gone within and addressed the many issues that I didn’t even recognise that I had. My Mum and Dad are amazing people and I have been blessed to have such supportive, stable parents, despite my immaturity to recognise it in my earlier years and I want to take this opportunity now to say thank you and that ‘I Love You Mum and Dad’ XX

I hope you have enjoyed this short account and that it has given you inner strength to face your fear and walk right into it. Life is so short in any event and every moment is so precious. It takes a major occurrence to stop you in your tracks and make you sit up and take note. Despite my daily struggles, I now find that the little things mean more to me than anything else. To be able to watch my children – now adults, follow their path, that I am still able to talk to my parents and meet up with family and friends. Hold on to what you have and treasure it, for you do not know when it will be taken away, because Nothing Ever Stays The Same.

With Much Love,

Caroline x

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