Diagnosis August 2010
After the first scan on Aug 5th 2010 I was soon called back to Gloucester for more scans, then again on Sept 2nd to see the neurologist for the results. He told me I had a meningioma and described it as a piece of gristle (I hope I never see that man again) which was to be removed, no big deal, they are very common, I would be back to work after a couple of months. I wonder if he knows what the real outcome was…….life changing. I was then referred to Frenchay and September 30th is a day I shall never forget; an appointment to see neurosurgeon Mr Porter, and he explained what had been causing what we thought to be migraines. In some ways it was a relief to know that the excruciating headaches were happening for a reason. Did I have a choice? No, it needed to come out.
My brother in Oz reassured me I had been given a clever surgeon, but we were left to find stuff out for ourselves. I had numerous scans, MRI and CT, eye tests and an EEG. I was never called back in for any results of these before the op. I was left with the internet. Even a leaflet to help guide us through internet sites would have been very beneficial and taken some of the uncertainty away.
Finding support, first through brainstrust (Helen understood), then Hammer Out (a bit more local), helped us enormously. Firstly, brainstrust sent me a book to read Living with a brain tumour by Dr. Peter Black (Click here to see the book in brainstrust’s shop). It answered many of my questions – it was the knowledge I had been craving, with facts and true life stories. I started to understand and I read it in one evening! It also helped my husband and carer, Paul. Secondly, for Paul too, Hammer Out was a group of individuals who could relate to the situation, listen and share his anxieties.
I had always looked after others and was a doer; I did not want to rely on other people, but I had to learn to let go and trust Paul and allow family and friends to help me. Everyone was brilliant and they all had specific jobs. My greatest fear was being disabled and not being able to look after my own personal needs. I had to learn to put myself first probably for the first time in my life.
It was to be my biggest challenge yet.
I was told this was not life threatening but life changing: “You can fight but you won’t win”. You will not be the same again.
I did fight; I had been fighting with migraines in my head for 12 months or more. I was a self employed tutor of dyslexic people and I remained as professional as I could but there were many times when I had to cancel lessons. Once diagnosed, I tried to continue with a reduced work load. Unfortunately, my head had other ideas and had no choice but to close my business. It took three weeks. I wrote lots to try and make sense of this new life. Giving up teaching was just like bereavement.
Quote from my diary 5th October:
“Yesterday’s teaching was a bit of struggle and I am aware this could be the last teaching I ever do”
My home was also where I worked. At the back was my teaching room, with a magnetic writing board, pin boards, numerous games and full with teaching resources. I could not leave it as it was just too upsetting. While I went to Cornwall to try and come to terms with my diagnosis, friends decorated the room and changed it into a dining room.
I planned to make the best of the situation and thought I could take up a new interest such as yoga, but the best place and relief was in bed or on the sofa with my head supported and sleep and codeine. I did manage to read (later I found out I was meant to limit my reading), and listening to music in a darkened room with candles was where I found the most peace. I began to learn about this grey word called fatigue. It was like an untuned instrument.
Just before Christmas 2010, I felt very privileged that Mr Porter personally phoned me to tell me the proposed date of my operation: 27th January 2011.
January 5th 2011 was the date for an angiogram to explore what the surgeon and doctors could do. I stayed in hospital for one night after the procedure. After, my energy levels were extremely low, walking and balance were not good either. However, I had missed New Year in Cornwall so some friends invited us down to their house overlooking the sea. It was lovely but exhausting; I slept and slept, functioning for about three hours a day.
The day before the surgery arrived and we were still unsure quite what this 14 hour operation entailed so all was quite daunting and scary. Although, I knew I was in very clever hands. Mr Porter attempted operations other surgeons just didn’t do.
Text message from one of my sons:
We will be thinking of you lots. But I guess we just have to trust the surgeon and doctors now to do their job. You have one of the very best surgeons so I really hope it will be a success and give you a better pain free life in the long run! Xxx
On the day, Mr Porter came to speak to us that evening and told us of his plans. It was all very reassuring. I do wish we could have known a little before the night of the operation. It was only the second time we had met him.
I had to send texts to family and friends to reassure them. They had asked me questions when my reply was always “I don’t know”.
“Just to let you know I feel very confident with what they are going to do tomorrow. Should be in a week to ten days I will be out as soon as I can. See you soon, Beth xx”
My dear youngest son after the operation said, “Mummy (although in his twenties) your smile is wonderful – no strain”. I had not realised that although I smiled loads before the op, it was such a strained smile because of the constant pain in my head.
My scar was incredible, a horse shoe shape so I’m told. As I kept my hair long, advice from Mr Porter back in September, it was disguised so well. I did have a huge turban on my head and too many staples to remember that had to be removed over two days with morphine. Washing my hair was not an easy task due to the tenderness of my head and it was a major task of the day for at least six months. I also had pain in my left upper side due to padded blocks whilst undergoing surgery. This did not completely go until nearly 11 months after the operation. This was just a minor detail as far as I was concerned.
I was desperate to get home and I needed to get all the boxes ticked to be discharged. Paul kept the text I wrote the day before discharge:
“Shower takes ages, then had physio, managed stairs slight prob with balance, and weakness in legs should get better eventually, maybe from angiogrm. Must walk before I can run. Boxes are being ticked xx”
I was in hospital for just a week, amazing. The staff were fantastic. The food was awful, my bed antiquated and they ran out of pillows. My son brought me in my own pillow that was bliss and I would recommend it (not sure the hospital would).
Arriving home was wonderful. When we arrived back in Gloucester, I could not believe the rain on my face, it felt so good!
Before surgery I could organise my life but had constant pain in my head. After surgery, wow, the constant pain gone and my eye sight was so much better, but I found it difficult to cope with everyday life. My initial reaction was one of euphoria. The neurosurgical outcome was a great success. Now my challenge is to climb the mountain and return to work.
A fortnight after my operation I wrote in my diary:
Well the ordeal is over and Paul, family and friends have been fantastic and strong. Paul has taken control, on so many tablets I could not get my head around it. I am truly alive so happy with the physical outcome and feel so loved. Prayers from family and friends willing me to pull through were enormous. Mr Porter said it was life changing and it certainly has been. The operation was only 10 hours (it may have been 14). The tumour was golf ball size the consistency of an apple. The complication was the vein in my head (saggital sinus VAT [vein and tumour]) that was repaired with part of a pig’s heart. Yes amazing!!!!
The first two months after surgery, I sailed through recovery. I could not believe it; my eyesight was so much better. I could walk and talk, feel my fingers and toes. Reading was limited but I slowly built it up. The computer was a real no go area. My short term memory was poor, as was my balance. I slept a lot and was never far from home. So much was done for me, housework, bed linen was washed and ironed, and my breakfast and main meal brought to me. Paul had a week off work then friends came in.
Three months after the operation, oh dear, then reality really hit me hard. This recovery was snail pace. Energy and stamina levels were low and I suffered from mood swings. Once again that grey word, fatigue. It was so frustrating – this was a huge lesson in patience and I was eager to get back to work. But I was slowly realising this was going to take longer than expected. Past emotional difficulties raised their head. The tears began like they had been stored in the hills for years and they flowed.
Through counselling I realised I needed visual prompts to help with my recovery. Making a chart with the months to tick off, mind maps and writing on Post-it notes what I could and couldn’t do and then moving them when I had achieved something helped me enormously.
My youngest son’s wedding in Ilfracombe was almost four months to the day after my operation. I was still on medication and found it all a bit much, however it was great I could be there thanks again to friends. My brother David and his family came over from Australia too.
Five months after the op I had the best medicine – I was the proud owner of a new puppy Lhasa Apso called Sam. He has been so good for me as he needs to go out regularly which has meant that I just have to go out for a walk and it’s great.
Six months on and I battle ongoing fatigue but I am learning to pace myself. I constantly set myself targets and very often fail! At times I feel quite vulnerable.
Life has changed however, six months is a huge milestone in feeling more in control with my life. Although there are still bad days, the good days are more frequent and I’m slowly taking charge again of domestic chores. I am beginning to make sense of my new life and take control of this recovery. Sam has helped heaps.
August, I finally had my appeal for employment sickness allowance and won! Thanks to a friend without whom I am sure I would have given up because of the mountain of paper work and organisation.
At the end of August my father (who had been ill since the Wedding) died in Spain. I was unable to fly so my younger brothers Paul and David from Oz took control. Another first, I had to let go.
Nine months on.
An even bigger milestone. Coming to terms with fatigue and able to pace myself more realistically. I feel I am getting back into the real world although slowly and in my own time and space. I have turned a corner into a lighter, brighter place that’s not so crowded. I have ridden my bike on a busy road which has given me some independence.
In September/ October I attended an introductory course in Yoga and creative writing at Maggie’s Cancer Care Centre. The courses gave me stimulation and nurturing in the right dose to move forward with confidence and determination to improve my quality of life.
During a creative writing class I compared my life changing experience to a burnt out sump in a car engine. I would never be the same again, like a sump had completely changed shape but I could still be of use in a different way.
Ten months on and I can now catch a bus without being sick and so attend a weekly gentle Well Being Yoga class in the community, Cheltenham. This has been a huge step forward.
For me to be able to move forward and progress I need to set myself goals. These need to be high expectations but also realistic. I have to understand and not get disappointed when I cannot reach them. Just have to have another go!
With Christmas my family had high expectations, so did I, especially with cooking the dinner. I felt a bit pressured and had some wobbly moments. However, I did it and I was so chuffed with myself. This has given me the confidence to move forward and I am now thinking and seeing that I may be able to return to some form of teaching.
A year on and it is incredible where I am. My processing and cognitive skills do not work as they should and I make mistakes where previously I did not. Despite this I strive to meet my goals. Thanks to a clever surgeon and team of doctors, a wonderful team of nurses whilst in Frenchay, a family who loved and pushed me sometimes to my limits and friends who never stopped believing and encouraging me even in some very low moments.
I have come such a long way in a year.
Life has changed but it is going to be ok. I am and want to get back into the busy world slowly. I know I have to pace myself, take little steps before the strides. This is and has been my biggest challenge yet and I am nowhere near the summit of the mountain but I am well on the right track to get there!!
Finally, to the best medicine – my dog Sam!