This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link:
Today is my 50th Birthday!!!
I have been home one week and time seems to have stood still again. I have managed very little. Although I was warned that I would be tired once home, the reality is very different. It is impossible to do anything without feeling so fatigued. The need for sleep is immense but not always possible and I find myself awake for hours at night, with endless random thoughts and dreams. Partly because of this, I have not managed to get downstairs after a shower before 2pm. My head hurts and my neck aches but all the time I am grateful that I did not have any visible facial complications or major balance problems.
I have not been outside of the house yet and my plans of daily walks have gone out of the window. Daytime television and the internet are fantasies, as I cannot concentrate on anything for a long time without a serious headache. I am reminded how hard our brains normally work without humans paying any attention to these inner workings. I count myself lucky that I have such fantastic colleagues and friends that I have been able to delegate all my activities with confidence and have left my trainees in great hands. Despite this, odd thoughts keep flitting into my brain of things I have not completed but these are very random and it is difficult to hold onto these thoughts to make any decisions! I am really struggling to see how I am going to return back to normal.
I have had the follow-up phone call from the John Radcliffe and am progressing as expected by all apart from myself! I will know next week whether this was a benign tumour but in my heart of hearts, I already know that all will be fine.
I think about today. I had started planning my 50th birthday a year ago. My sister and I had considered many ideas as to what we could do and had started to buy various little accessories for the party. I had never considered that I might not be well enough to throw a party. My diary is normally overfull and I could do with expanding my day from 24 to 30 hours. I really enjoy being busy and being organised (at work that is) and have many commitments in the diary a year in advance of now. This illness has made me realise the value of time and the need to enjoy the now. I know that I would not have stopped to consider my career and life plan without a serious illness to stop me and I am just so lucky that this is one illness that will let me get back to as near normal as possible.
When I woke up today, there were many cards, and the flowers have continued to arrive. I had so many beautiful bouquets since I arrived home and the doorbell has not stopped all morning with further deliveries. Each one is thoughtfully chosen with a heartfelt message attached and a trigger to make me cry. Patients, colleagues, friends, neighbours, trainees and complete strangers have left messages on the blog, Facebook and Whatsapp. How can I not feel better?
I struggle to get out of bed and have breakfast. I have been trying for two hours but I know what I want. I have developed a longing for toast with lots of butter. We must all go back to happy, safe times when we are in need. My mother and father were market traders when I was little. On Saturdays we would travel to Holyhead in Anglesey, North Wales. We used to arrive very early and would unload the van and set up the stall with my parents, brother and sister. In the far corner of the market, there was a huge bakery stall. They sold freshly baked bread, which first thing in the morning would still be piping hot. The smell of fresh bread drew so many customers and was good for trade for all in the market. They also sold homemade Welsh butter and jam. The three of us would enjoy doorstops of fresh bread with melting butter aplenty for breakfast and so the smell of bread always takes me back to this time. Holyhead market which was held in a Grade II listed Market Hall which was designed in 1855 by J Edwards Thomas. My brother, sister and I visited North Wales last summer and were saddened to see the ongoing demise of this beautiful building, I am so pleased to have learnt that Holyhead council have won a £2.4 miilion Heritage Lottery Fund grant and will restore it to its glory. Daddy would have been very pleased.
See I told you I hold random thoughts! I really do need to get up nd I need to have a shower. The plastic chair in the shower is a godsend as my legs feel so weak and I cannot stand for a long time. I feel like my 90-year-old father who needed a seat in the shower in the latter years! It still takes me around an hour to shower and get dressed. I cannot dry my hair with a hairdryer and natural drying leaves me with very frizzy hair. I have not been able to summon the energy to put on any make up and contact lenses are a luxury. There will be no photos of me on my birthday then!
The immediate family will be gathering in the evening and I am further grateful for mother nature’s best gift to me, of health and well-being. Everyday I am thankful that I have not had to manage a shortened life expectancy nor a physical life changing event. Those that do are so courageous and I can only empathise but cannot even start to fathom the emotions and decision-making undertaken by those individuals.
As I try to choose what to wear, I am reminded of previous birthdays. One of the delights of working in the NHS is that you develop an extended family. Traditionally we have had a family celebration and a work celebration. Somehow over the past few years the trainees have started baking me cakes and decorating them. The trainees are so talented! Every year the themes have become more amazing and the cakes are so professional.
One of the trainees has turned professional and baked my sister’s 40th birthday cake. She loved it!
She also made my Daddy’s 90th birthday cake which was incredible.
We added photos of the many friends and family whose company Daddy enjoyed on smaller cupcakes. Everyone enjoyed finding their own ones!
We often celebrate with my NHS family in a central London venue as this is convenient to all. One has become a firm favourite and we get very special treatment. Yet again a few years ago, we all had a very enjoyable evening and then I was surprised with my birthday cake.
I can only try to describe the horror on the faces of the other guests at the venue. We all work in a clinical setting and there are many situations which would make people turn away but it is the bread and butter of our workload and we get on with it. I think we forget how alien these situations can be to other people not in our profession. There are so many sad times, when as Daddy used to say, we cannot halt the natural timeline when people pass away, that we find a way to manage the strong emotions within our groups of friends.
The cake was amazing and the trainees had clearly thought about the things I really care about. I am passionate about ensuring that patients with diabetes do not develop foot problems and if they do that they get rapid access to care. Sometimes patients need minor or major amputations, which causes great mental and physical anguish to these patients and their families. We use maggots alongside surgical treatments for these patients. We call the maggots, minute surgical operatives, as they eat any dead tissue and clean a wound beautifully without destroying the healthy tissue around the damaged site. In the early days we would use free ranging maggots that would sometimes escape the bandaging containing them. Nowadays we use maggots encased in very fine netting which allows them to work but keeps them in one place!
This cake was a replica of a diabetic patient’s foot complete with an amputated toe and maggots which had escaped the netting! We were enthralled but my apologies to any non NHS staff who were put off their food that night!
Last year, I had another wonderful cake and really did not want to cut into it! I remember feeling exhausted during the evening and it is only in retrospect that one can explain why.
This cake was decorated to resemble a open human abdomen and came complete with surgical instruments with blood still dripping off them! It took me all evening to agree to cut and share it as it was absolutely beautiful.
This year feels very special. Yes of course a 50th birthday is special but this year feels as if I have been given a second lease of life.
I have spent each day post surgery in pyjamas as it takes too much energy to get into clothes but I have had to make the effort today. I seem to have spent the whole day having a shower and getting into trousers and a top. I cannot summon the energy to put on make up and as I am not allowed to dry my hair yet, I come downstairs looking like a bedraggled rat!
I must have my stitches out today and rather than wasting the time of the district nurses, I have asked my husband to take them out (with full permission from my Surgeon). There are millions of stitches and he takes them out for me very carefully and slowly. What a great birthday present!!! It is really odd how each of these very small steps feel like a gigantic leap towards being normal again.
I am spoilt by neighbours and family and I have a gorgeous cake bought by my husband (and a second one bought by my sister) but I am so tired. I cut the cakes and open my presents and cards but I just want to go back to sleep.
We make a decision that I will have a 50th birthday again next year and make sure I invite all my friends. It is saddening to think of my close friends from my early years, who I am in touch with via Facebook and LinkedIn but have not actually met or talked to for many years. I make a promise to myself to get in touch with all and try to meet up at least once in the next year. And I know that as soon as we start chatting it will be like we only talked yesterday. Children and work seem to take up all available time but I need to find time to catch up with things that really matter.
I go to bed as I have a headache developing. Thoughts start to wander into the future. My children are 18 and 20. I start to think about their 50th birthdays. What will life be like 30 years from now? 30 years ago we developed the mobile phone, disposable contact lenses and CDs effectively wiping out my beloved cassettes. The Mackintosh computer was the in thing! How we have changed. The current mobile phones have as much computing power as a roomful of computers and music is downloaded and played so CDs are going out of fashion. In contrast vinyls are making a comeback. What will be in vogue in 2047? Driverless cars, flying cars, communication by telepathy, travel by thought? Who knows?
Will global warming have caused shifts in water levels with London being flooded? Will the Great Barrier Reef still be colourful? Will we have inhabited Space? What kind of world will we live in? I say we but I will be 80. A macabre thought fills my head. Will I still be here by then? My Mummy suddenly passed away 63 of a heart attack and everyone tells me that I look like her.
Will the world have found peace or will it become more divided than now? Will it still be here? Too many questions and no answers. Now my head has started to hurt. More thoughts wander in and out. I have so many flowers. Perhaps I can dry them and turn my 50th birthday flowers into a present for the kids for their 50th. I start to consider all possibilities and fall asleep.