Dee's Journey Through My Eyes by Michael Govier.
5 years ago, my world changed. This was the day that my wife, Dee, suffered a seizure and was rushed to hospital by ambulance.
I wasn’t with Dee when she had her seizure but from the moment I got the phone call that she had been rushed to hospital, life has been anything but normal.
As I made my way to hospital, I remember thinking to myself that it wouldn’t be anything serious; Dee was just in A&E and I would bring her back home that night all patched up and fixed.
I knew she had had a seizure, but I was convincing myself that everything was normal and would be OK. Dee was kept in hospital for 3 days as they did tests to see what had caused it. We didn’t get much information and I still thought that everything was going to be fine even after she was kept in hospital.
It was the 1st April 2015 that Dee was transferred to a specialist hospital who had been analysing the scans. This was where we got the news that Dee had a brain tumour.
There was hardly enough time to process this before decisions needed to be made about whether to have surgery to remove the tumour or wait and see whether it was benign.
The decision to have the operation was made within half hour of being given the diagnosis. It didn’t feel real that just 3 days earlier, we were living our normal lives and now Dee was preparing to have brain surgery.
The period between getting the diagnosis and having surgery was a blur. There’s little that I remember of the 6 weeks leading up to the surgery. The night before it took place, I do remember vividly.
Dee was to have her surgery first thing in the morning so was to stay in hospital overnight to be prepped. The seriousness of what was going to happen to Dee dawned on me as I was leaving her in hospital on my way home for the night.
The next time I would see Dee would be after the 8-hour operation the next day. As I was saying goodbye, it hit me that the worst could happen. What if the operation didn’t go as planned and this was the last time I would be able to speak to my wife?
The waiting at the hospital the next day felt like an eternity. When I got the news early evening that the operation had been a success, complete relief washed over me. I was so pleased to see Dee.
She had her head bandaged, was extremely groggy and not able to talk much but just seeing her awake and alive after having her head cut open and part of her brain removed seemed like a miracle.
I thought that the worst was over and that after a period of recovery, Dee would go back to her usual self. I wasn’t prepared for the reality of what post brain surgery life would be like.
Before the surgery, there was the possibility that the tumour was benign. What the biopsy of the tumour showed was that it had grown fast in the 6 weeks since diagnosis and that it was now considered a grade III tumour, and about the size of a plum.
Looking back, the decision to have surgery rather than “wait and see” seemed like a bullet had been dodged; in all likelihood, if surgery hadn’t been completed so quickly, there was a high chance that it would have been too late for Dee.
There were noticeable side effects of Dee’s surgery including memory loss and mixing up words in sentences; one-time Dee couldn’t remember my name until I told her what it was again.
Being on steroids created side effects in Dee and her reactions to the smallest of annoyances were now eruptions of anger. Dee would describe herself as being like a volcano, ready to erupt at any moment without warning. I kept reminding myself that it wasn’t Dee that was reacting like this, it was the tumour taking over and she had no control of it.
As the tumour was not considered ‘high grade’ prior to surgery, little information had been given to us about what the treatment would be after surgery.
We knew that steroids would be taken for a period to control any swelling of the brain and that there were risks of speech and memory problems; after all, a significant portion of Dee’s brain now was missing.
But now that the tumour was classed as ‘high grade’, to be sure that the tumour hadn’t spread, Dee would need to undergo a course of radiotherapy and chemotherapy.
I was incredibly naïve about the impact of what Dee had been through already and how radio and chemotherapy would take their toll on Dee’s body.
Much like before the surgery, I was convincing myself that Dee would go through the treatment and all would be OK, and we might then return to our normal lives. I came to realise it would be much different to what I thought.
Instead of being on our holiday travelling around Vietnam and Cambodia, we, and Dee’s mum, were spending every day for 6 weeks making the half-hour taxi ride to and from hospital for Dee to have radiotherapy.
I don’t know how we managed to make the same trip to hospital every day. Dee was so weak and unable to travel by public transport for fear of being sick due to the side effects of the treatment. What I do remember about being at the hospital was that there was no-one our age there; everyone who was being treated was close to retirement age.
And then there was Dee, a 29-year-old who was having her daily life taken away from her as her brain cells were slowly being destroyed in the hope that this would also destroy any remaining tumour.
This 6-week period was a struggle. Dee barely ate anything over the entire course of radiotherapy. Her weight became dangerously low and her energy levels were lower than I had previously seen.
It seemed never ending; the repetitive cycle of travelling to hospital, being blasted with radiation, and then travelling home to lie in bed unable to function or complete any activity. Before starting treatment, we had assumed that chemotherapy would be the worst part, but it was the radiotherapy which drained all energy from Dee and left its lasting mark.
Following the 6 weeks of treatment, Dee then had to take chemotherapy tablets every month for the next 12 months, with the time in between taking tablets being just enough to build back up the strength lost from taking the previous dose.
Dee’s energy and sickness became so extreme that the doctors cancelled the final dose as Dee’s body just couldn’t take any more.
To think that over a year of life had been used up by taking tablets and being treated for the brain tumour seemed so unfair. Why had it happened to Dee and why did our lives have to be on hold for so long? It is now 5 years since that first diagnosis and our life still feels like it is on hold.
As with the surgery, now that the chemotherapy had finished, I thought that this was all finally over and Dee would slowly get better each month and build herself back up to who she was; that she would go back to her teaching job and we could look forward to the rest of our life and do all the things we had put on hold over the past 18 months.
M.E. Symptoms and Diagnosis
At first, I thought Dee was getting better and I started to look forward to living a normal life again. Dee had been slowly building up her ability to exercise and was starting to take part in charity runs to give back to those who had helped her through the tumour.
But it wasn’t long before Dee’s energy levels reversed and started to deteriorate, and it became clear that Dee’s condition was actually getting worse rather than better.
In the previous 18 months there was always a reason why Dee was tired and unwell, whether it was surgery, radio- or chemotherapy. But there wasn’t a reason anymore, and yet Dee felt more tired than when she was on the worst doses of treatment and was able to do less now than while on chemotherapy.
The oncologist said he hadn’t experienced any other patient that felt this tired so long after finishing treatment. He had no explanation for why Dee wasn’t getting better.
Tests were done to try and find anything that could explain why Dee was feeling this way. Neurologists, endocrinologists, oncologists, none of them could give any reason or cause for why Dee was not better.
After over a year of constant hospital visits and tests, Dee was referred to a fatigue specialist and diagnosed with Chronic Fatigue Syndrome (CFS), or as it’s also known, Myalgic Encephalomyelitis (M.E.).
There’s doesn’t seem to be any reason why someone gets M.E. We can only speculate that it was a side effect of the brain tumour treatment. There is also no cure for M.E. and no universal tablet or treatment that can improve the condition.
I had always retained hope that Dee would recover to be at least half the person she once was but after the diagnosis of M.E., I now accepted that Dee will never return to who she was and will be left with this disability for life.
After suffering a brain tumour, I thought that Dee had been through the worst, that nothing could be as bad as the 18 months it took to complete treatment. In reality, I’ve found that coping with M.E. has been a much bigger challenge.
That is not to say that this will be the case for everyone. Some people will not recover from a brain tumour and the level of symptoms that someone suffering from M.E. can vary. But what has been most difficult with M.E. is that there is no end point to work towards.
With the brain tumour, there was always a time when we thought it would end; after surgery, after chemotherapy. With M.E., there is no defined time when things will get better. In most cases there will be symptoms for life.
M.E. is an invisible disease. Most of the time if someone were to look at Dee, they would not realise there was anything wrong. It’s not obvious that every day is a battle to complete the simplest of tasks, from getting dressed in the morning to making dinner in the evening.
The psychological damage of living with an invisible illness has been worse for Dee than the physical aspect of the disease. It is the constant worry of being judged, wondering what people are thinking and whether they believe what Dee is saying about her largely invisible symptoms.
As a side effect of M.E., Dee’s senses have become over sensitised. Noise has become a real issue. Being in crowded areas or even small groups where there are multiple sources of noise add to the draining of energy and leave Dee physically exhausted. This can’t be seen and adds to the feeling that Dee has of worrying what people are thinking.
The only visible aspect of Dee’s M.E. is when walking for a short period around a crowded shopping centre her legs will give up, noticeably dragging across the floor, and she will struggle to put one foot in front of the other.
We now have a wheelchair permanently in the boot of our car, conscious that every trip out of the house now may leave Dee without the energy to walk around as normal.
- Dee was mad for sport prior to being diagnosed with a tumour and trained up to 5 times a week playing Gaelic Football. She even managed to play at Croke Park in Ireland where she scored a goal in the Junior All Ireland final in 2008.
- Dee attempted to return to her job as a secondary school science teacher after finishing chemotherapy but after a phased return, her illness deteriorated and after a couple of months working 2 half days a week, the fatigue became too much and Dee had to give up her job permanently.
- Dee now has to use special assistance through airports as she finds it difficult to manage through a busy airport with her fatigue. Due to the illness not being visible, Dee often feels she’s being questioned why she would need assistance as she is young and visibly there is nothing wrong with her.
Dee has not been able to go back to work with her energy levels and fatigue leaving her unable to complete simple tasks regularly. Before the brain tumour, Dee was incredibly active, playing sport on a regular basis and socialising with friends at every available moment.
All of that has been taken away from her since the brain tumour and even more so now living with M.E. She’s been unable to play sport for 5 years and she now socialises very rarely. It’s not that she doesn’t want to socialise, she just doesn’t have the energy or ability to manage it.
Whilst it has been taken away from her, it also feels like it has been taken away from me with my role now being more of a carer than a husband. On the occasions when I feel I can leave Dee at home I feel guilty. Why should I be out enjoying myself when Dee is not able to but would do anything to be able to be out with me?
And yet, despite all that Dee has been through, we know that we are lucky. Dee survived the brain tumour when there are many that unfortunately do not get the chance to have surgery or effective treatment.
Dee is not left constantly bedbound by M.E. when there are others suffering from M.E. who spend years not leaving their beds. We are fortunate that we have each other. At no point during the last 5 years have I considered walking away from this. Yes, it has been the hardest period of my life and it continues to be a struggle to get through the days. But knowing that Dee is still alive and that I can bring a smile to her face is enough to keep me going.
The brain tumour has brought the two of us closer together, more so than I thought any couple could be. We were forced to do everything together and I was forced into the position of being a carer for Dee. No-one would choose to have that role but when the situation arises, you get on with it as it is for the person you love, and you would do anything to help them when they are most in need.
It gets easier in time to live this way. I used to be extremely bitter about not being able to socialise with my friends for fear of missing out.
Over time, I’ve realised that friends will always be there to go back to but that the time I have with Dee should be treasured. It could so easily have been taken away had it not been for the incredible doctors and surgeons that removed her tumour.
Dee has remained positive throughout and continues to be so. She has remained the kind and caring person she has always been, continuing to think of others and put their feelings above her own, even when at her lowest points.
It is incredible how strong she has been. I don’t think I would have coped with what Dee has experienced. She is proof that no matter how difficult life can get, there is always a way through and is my inspiration to keep on going and to support her on this journey.
ME Awareness Week Monday 11th – Sunday 17th May 2020
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