My life was pretty simple.
I was 27, had a girlfriend of eight years, with a child called Lewis, (who I call my son after bringing him up since he was 18 months old), a son called Jordan aged four, a house and of course a job! I was working for Lloyds TSB Private Banking. My whole life was normal; get up, get the kids up, get off to work, get home, feed the kids, get the kids to bed (eventually) and spend an hour or so with Paula catching up on the day’s events. The other joy in my life was rugby! I am a HUGE Rugby Union fan and was playing for my local team.
At the start of 2006 I started to feel tired; it was put down to the drag of everyday life and a busy work-life balance.
With the tiredness, I had also developed these excruciating headaches; you would find me clutching my head in my arms and squeezing. The headaches were almost unbearable. But as we do, we struggle on, which I did. So my life at this point felt like hell, I was always tired, had no energy to enjoy my family, wanted to go to bed constantly, my headaches were now so painful, my eyesight had got worse. I had stopped playing rugby, and had lost my way.
In 2008 I was rushed in to Frenchay Hospital, Bristol with a brain tumour the size of a lemon.
After two life-saving operations and six weeks of radiotherapy, I am lucky to say I am alive. Since June 2008, I have undergone many other tests following the discovery of a dysfunctioning pituitary gland. The results of these tests have confirmed that I have hypopituitarism, I am growth hormone deficient, I have diabetes insipidus, I need to take hydrocortisone (steroid which replaces the body’s natural production of cortisol) twice-a-day, and also I have a deficiency in the male hormone testosterone, which I replace daily. Hormones make us the people we are, and it is hard to come to terms with not being who you were.
When dealing with all the changes to my mind and body, I found myself feeling alone and with lots of questions unanswered.
I didn’t feel like I could continually ask my GP things, because the surgery didn’t seem like they understood things either. Then, one evening while searching the Internet for answers, I came across The Pituitary Foundation. It gave me an insight into all my conditions. I learnt more in that one evening than I had for the two months of consultant and GP meetings! I could take my time and read things through, print off information and give to my family to read, so they understood what was going on.
Over the past two years The Foundation has helped me in my everyday living. For instance, helping me to secure a radar key, which has saved many an embarrassing moment when desperate for the toilet! The Foundation’s Emergency Hydrocortisone booklet has saved my life recently when I was involved in an accident. Because of this booklet, the ambulance crew were able to identify my need for an emergency hydrocortisone injection and prevented any further complications. I have phoned and spoken to Helpline operators, who have put my mind at rest and given me sound advice on matters I was unsure of.
For me The Foundation has made me feel a part of something. A sense of belonging.
I used to feel alone and confused about what was happening to me. But now I feel I know exactly what’s happening and how it’s affecting me and I can plan and organise my life so much better. To know there are other people out there experiencing what I’m going through helps towards the self-healing. I can’t speak highly enough of The Foundation, and the support it offers because it has helped me get to where I am today and enjoy life again after a horrendous ordeal. Without The Foundation and the support I have received I believe I would not be back to work full time as a Bank Manager, be back playing my beloved rugby every Saturday and be the father I am to my three children.
2014 update
This update couldn’t come at a timelier manner to allow me to highlight the importance of our support network because, without all of them, I would not be here today.
This update couldn’t have come at a better time for me personally either, to allow me to reflect on the past few years. Since my story was written, the positives are: we’ve moved to our perfect home in Martock, Somerset. Our three boys are now Lewis 15, Jordan eleven and Blake six; all three are growing up into amazing boys, who make me proud each and every day even when they are fighting! I am still here battling on every day now; I put that down as a positive to highlight that it is so very easy to become complacent.
My struggles
Weight gain: I am the heaviest I have ever been; two flights of stairs leave me huffing and puffing. Now, I’m a relative fit 33 year old rugby player but with the recent increase of my hydrocortisone my weight has increased. Body shape: my body shape changes throughout the testosterone cycle.
My biggest struggle is my mind
Every day reminded of what I’ve been through. Mood swings, depression and tiredness have all pulled me to the lowest points over the last six months, so much so, in my last endocrinologist appointment in July, I broke down and admitted I couldn’t cope any longer. The hamster wheel of life was moving too quickly for me to keep up. With my condition, I couldn’t determine if it was just normal to not feel like you could cope, because of our busy lives, or, if it was down to my hormones not being at the correct levels to be able to cope. Dr Bickerton was extremely supportive and as a result of blood tests has increased my Levothyroxine and hydrocortisone. A month on, I am happy to say I can now cope with the hamster wheel of life and the dark clouds that were inside my head have totally gone. I am now no longer the miserable husband or dad, but the happy full-of-life one again. The increase in my medication has improved our lives so much, it’s amazing.
Keep talking
If you take one thing away from reading my update, take this. What we go through never stops. We battle on, not knowing what we are battling, until we get the results of tests. Our bodies and minds control themselves and it’s out of our control sometimes. Keep talking; write a diary so you can see what worked well and what didn’t. Sometimes, by looking back you can see how far you’ve come. Use whatever support The Pituitary Foundation offers, that suits your needs. If it’s a buddy, a telephone call to the endocrinologist nurse, or printing off an information leaflet. Keep in contact with your endocrinologist and be honest. I broke down in my last review, instead of being the brave stubborn man I usually am, and by doing that, my hormones are to the level they should be and WHAT a surprise, I can cope again!
I would like to thank The Pituitary Foundation and my wife Paula, who is my ROCK (she knows me better then I know myself), for all the fantastic support you have provided me and the people around me.
August 2014