Kevin or Perry?

It’s been an emotional roller coaster of a week this week. A LOT has been playing on my mind recently. One of those weeks where I have been wishing I had the opportunity to restart and reload a previous save game -oh if only life was like a video game!

St. Valentine you have a lot to answer for mister! I’ve been missing someone who is a friend for life although has made it clear that she no longer has feelings for me. It has been extremely difficult to deal with this, this week more so than others. When you have been in love (REAL love) it’s difficult to turn those feelings off overnight, life takes time to adjust. You can runaway and do things to take your mind off them for a moment, yet the process is still running in the background eating away at your core.

Now I could have probably dealt with the situation better if I didn’t have another layer running on top of this process. The hormones! Each day I’m fueling my body with replacement Testosterone. My body has been missing this natural chemical over the past 16 or so years so for it to appear all of a sudden makes every day feelings & situations appear so much more intense than they did before.

Adding to the tension, on the Thursday after V-Day. I had been allocated an appointment at Epsom hospital to see a genetic counselor. Or so I thought. This is what I really wanted to talk about.

I arrived at the hospital in good time and the letter stated that the appointment was in the maternity wing. I immediately felt uncomfortable about this when the letter came through – however I thought there must be a connection somewhere.

Upon entering the hospital I walked to the maternity wing and it was like a scene from ‘One Born Every Minute’. Parents-to-be wandering around the corridors looking for a place to check-in. Midwives drinking cups of tea and eating cake could be seen from down the hallways. I walked around the corridors for a while searching for the outpatients part of the wing & all I could find was a room by the entrance with the words ‘Ante-Natal Clinic’ written on the doors.

I thought to myself that this clearly could not be the place that I am having my appointment and walked through the room getting strange glances from the parents-to-be and also the staff. I must have walked through the room several times and it was only when I decided to walk back through the room from a different door that I realised I was in the correct place. The name of the person I was going to see was scribbled on the wall behind the desk. I’d obviously come in from another angle so missed this sign completely.

Standing in the queue to speak with the receptionist I began to shed a tear or two. My emotions had kicked in when I saw parents-to-be & parents with newborn children looking back at me. It was almost as if I had a sign above my head saying infertile. I felt extremely uncomfortable in this room & began to resent coming to the appointment – it felt like a sick joke on behalf of the NHS. As I approached the desk the lady asked if I was okay & that she had seen me walk through the department a number of times before joining the queue. I had managed to get myself into a state at this point so I just politely said that I didn’t think this would be the clinic for me & explained that I had come through another door and missed the sign with the persons name on. I was asked to take a seat & the only one available was by the children’s play area – great!

I could feel myself getting more and more frustrated at the thought of waiting in that room with the parents-to-be. So I started to look around the room to take my mind off things – I felt worse. Everywhere I looked I could see a board that either said ‘how to breastfeed’ or ‘how to change a nappy’. Above me there were interactive displays with offers on baby food or nappies. Thanks for being so insensitive NHS!

Display Boards

I had only been sat down for about 5 minutes and that felt like a lifetime. I was getting ready to say something, restraining my anger by biting my tongue. Then a mother and her young child came and sat by the play area. I felt obliged to give my seat up and I stood towering above everyone with them all looking back at me. I felt in my mind as if they were chanting INFERTILE, INFERTILE, INFERTILE!

Stop this mind torture someone please as a few more tears ran down my face! I then overheard the woman that I had just given my seat up for saying to her young daughter that sometimes she wishes she had never been born. The chanting in my mind stopped & the focus turned from me to her. It was at this point when I thought to myself I’m going to either have to leave or say something to her; ‘you don’t realise how lucky you are!’ – and it was at that moment I heard my name being called through.

I entered the room after 15 minutes of mind torture and the very nice lady (sadly not Deanna Troi) asked me how I was. Any other day I would have been polite – on this occasion T-Wolf stepped in and said ‘sitting in that room made me feel very, very uncomfortable’. I think she could tell that I was feeling upset and sat me down and apologised for the location of the clinic. Agreeing with me that it was insensitive and would pass on my feedback.

We spoke at length about my condition, about what I thought it was and what it really is and why it happens. I started to understand it a little bit more than before, as she was very good at explaining the reasons why. When you are sat with an expert on genetics who takes the time to draw diagrams and illustrations you know that you are in good hands. I told her about this blog and the reason that I have set it up to help family, friends and others understand what changes I am going through at the moment. It then occurred to me that this was not a session of genetic counseling as I thought it was going to be. Although at the time I didn’t mind too much as it was very insightful.

We discussed that I had been through a lot in the past 6 months; work stress, the condition, bereavement, relationship breakdown and more recently starting the T. It was decided that I would benefit from seeing a genetic counselor to work through everything that is happening to me so that I can come out the other end feeling happier about the future.

We then spoke about what happened when I was initially diagnosed with the condition and what affect that had on me emotionally and also about what was offered to me in terms of finding if any sperm did exist within me. The consultant in Guildford told me that there would be a cost to have a micro-dissection of the testicles done to find sperm. The cost of which would be in the region £5,000 and would not be funded by the NHS. I asked at the time what the chances are given my condition and it was 50/50 – it’s a lot of money to gamble on chance. At the time it was an emotional roller coaster having just found out that I couldn’t have children through normal means put a lot of pressure on my relationship and also on me as a person. I let myself go & pushed away the person that I loved and now as I write this with tears in my eyes I wish I had known then what I was told on Thursday as it might have made a difference on the way I behaved – “Can I restart that level again please?

There may be a chance that I can get the operation for free. If there is a chance I will gladly take it whatever I need to do. I couldn’t help but think that maybe if we had been told this at the start, things now could have been different today. It’s a snippet of hope that in my mind is life changing!

I then told her about the god awful pamphlet I was given with the picture of what can only be described as not your every day man on the front – below for your enjoyment!

Klinefelter Syndrome Guide

This was another reason why I decided to write this blog – I looked at this picture with my partner at the time and we both came to the conclusion that this looked like a stereotypical gay man – what were the NHS trying to imply that every man with an extra X chromosome is gay? I am not! I like T&P!

The session ended on a high! There is a chance that I can get the operation I need for mind closure for free. There ARE people who I can talk to and work through the emotional issues. Despite the initial tears at the start of the appointment -upon leaving I started to feel much better about the future!

I had the opportunity to ask a few questions. The one question that I needed to know the answer to is “by taking the Testosterone am I going through puberty again?

– “Yes Kevin you are!”

Counselor Deanna Troi please!

Deanna Troi Wiki

Any fan of Star Trek will remember this lady. If you don’t then this is Deanna Troi the counselor on the USS Enterprise NCC-1701-D & E. You are probably wondering what the hell this has to do with a blog about Klinefelter’s Syndrome. Well here is the thing – next week I embark on a new chapter in my life ‘Genetic counseling’ & I’m hoping the counselor will be just like Deanna Troi. Make it happen NHS!!!

I received a letter today from the hospital to say that my first appointment is next week on Thursday morning at Epsom hospital. Epsom not Guildford? Ah balls that means it is not going to be straight-forward to get there! My other issue with the letter is where the clinic is based in the hospital – pediatric unit ; maternity wing! A little bit of sensitivity please NHS. I’m coming to the clinic to seek help with the fact that I am infertile – so why on earth is the clinic based in an area surrounded by children & parents to be. Doesn’t sound right does it? Another thing that has put me off attending is a questionnaire that came with the appointment letter. Upon reading it 75% of the questions are based around starting a family and the rest about me as the patient – there isn’t even an area for comments! You can probably imagine what I would be writing in the comments section. I’m certainly going to bring this up when I get there.

At first when counseling was offered to me I didn’t think it applied to me & I certainly thought that having the support of family and friends would be enough. I was wrong, I can admit that. So I have swallowed my pride a little bit and opted in. The issue is that family and friends can only support you through providing that shoulder to cry on or to be on the other end of the phone and tell you that everything is going to be okay even when they don’t fully understand the circumstances. I have to take this opportunity now to thank family and friends for being supportive and also for being interested in my journey.

Counseling apparently comes into its own here as these people are trained to deal with people like me. They know the journey like the back of their hands and fully understand the circumstances surrounding the diagnosis & treatment. It’s here, in this 1-hour per week session where I lower my shields and let someone with a fresh perspective guide me through it all.

At Christmas I took myself away to reset and find myself again. When I returned I felt great – I was looking forward to a new outlook on life and starting the treatment I had been told so much about. 4 days into the treatment I started to feel change happening. 22 days into the treatment and I still feel great. I wake up at around 06:30am each day and every other day I shave. Something I never thought I would be able to do. I used to shave the 3 or so hairs on my chin that grew every 3-weeks now it’s becoming a routine.

I have so many questions that I need answers to and I’m hoping I can talk openly about these with the counselor as everything is changing on the outside and on the inside. One thing that I have noticed more so in the past week is that my mood is fluctuating. I read a few similar blogs online that mentions during the second batch of treatment (each one lasts for 20 days) this is more apparent. It’s as if I am going through puberty all over again – 17 years late. My emotions are all over the place at the moment & what is not helping me is the fact that for the first time in 12 years I’m not going to be taking part in the Valentine’s Day theme – love no longer lives here anymore.

The fact that love is non-existent in my life at the moment does bother me and is something that I will be bringing up with the counselor. My problem is this; if I was ever to find love again at what point do I tell that lady that I am infertile – at the beginning , in the middle or when? It’s something that plays on my mind constantly. It is also something that inspires me to write down my thoughts and feelings in my poetry.

On the subject of poetry, when I was up around 06.30am on Sunday I decided it would be a good idea to sort out my flat. I came across a box of old VHS tapes. In the box I found a tape featuring this little gem – be prepared to laugh out loud as we rewind back to the 90’s.

Counselor Deanna Troi report to the bridge please!