20 years gone too soon.

Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.

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20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.

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The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.

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This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.

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Uncle Dermot with me and my younger brother.

I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.

dDcNhrJkRVaw4BiAiXXDxA.jpgFor a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.

Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.

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Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.

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(I love this photo of Granny aka Great Granny Annie proudly holding baby James)

I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!

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The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.

I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.

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2nd dose of Mepolizumab in the bag

Thats the second dose of mepolizumab done and dusted. Now to wait till next month for my next injection next month.

So many people have been asking me how I feel and if the new drug is helping or making a difference, or ask me when I will start noticing the benefits. Its really hard to tell. I am feeling some positive effects from it I think and there have been a few side effects but nothing major.

The most telling sign is that I have noticed my peak flow has been increasing and I have not been in my red zone since the 19th September. That is a full 10 days. It may not seem like a great achievement and many will not agree with me for being excited that I have gone ten days and not dropped my peak flow but the nature of my asthma has meant that my peak flow is all over the place and so has my control been. I must say my asthma control has not been poor through my own choice and I have tried desperately hard to keep it n control. I have not managed to get into my green zone since June but I am happy with that. Better to be stable and sitting in my amber zone stable than jumping up and down with readings all over the place. I think slow and steady is the way to improve….it has after all only taken 14 plus years to get to this point.

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Other than looking at peak flow results and keeping track of how much salbutamol (both nebuliser and inhaler) I am using how do I actually feel? DoI feel different?? It is hard to say. My prednisolone dose has not been reduced and has been kept at the same dose since I was discharged from hospital in April. I am finding it hard to identify if feeling well and pretty stable is because of the steroids or due to the introduction of the mepolizumab. Once I have my 3rd injection I am hoping my consultant sticks with his plan and we can start the slow process of reducing the prednisolone. I am aware I won’t get off it (or may get off it and converted to hydrocortisone due to adrenal failure) but lower will suit me just fine.

Since starting the mepo I have not been to bad with side effects. After the first I had a bad headache the first time but the second dose was not as bad. A bit of a sore head but nothing to major. The one thing I have noticed and I am not sure if it is coincidence or what but I have been waking up in the morning feeling like I am drowning or choking on the amount of phlegm I have on my chest. I have always had a bit of a productive chest- it goes with the territory of having lung disease but this is different. I am still not sleeping super well but I am wondering if that because I am sleeping slightly better and not waking up so much the phlegm is building up rather than me waking having a cough moving all the stuff and then settling back down. I guess the good thing is that all the movement of phlegm means I (fingers crossed) won’t be as susceptible to a chest infection and may notice them quicker as everything is moving so will see the colour changes. Although this is good that I am moving stuff in my chest I find in the morning I am having to do more saline nebulisers and a lot of physio to move it and it has often made me sick because of it. This is a minor price to pay though in terms of side effects.

With this medication as I have said before I won’t see improvements over night but will over time and I think I am starting to see them. The other thing I have noticed and finding it more and more is that people are telling me how well I look and don’t sound as bad which is probably the best part. The past 3 weekends have been jam packed full of different things- mainly lacrosse and by the end of each weekend I have been on my knees longing for my bed but I have managed them. I have managed to spend these weekends on the side lines of a lacrosse field, or in the middle of a lacrosse field coaching  with either Edinburgh Uni or Scotland (Scotland is just goalkeepers and assistant manager). A lie in over a weekend would be lovely and in the past weekends have been all about recovering and getting myself prepared for the next week of work but I have been able to use these weekends to do what I love and not suffer at work. Don’t get me wrong it was so hard to get up on Monday but I think most people find it hard to get up on a Monday morning for work so being what I called “normal” person tired is awesome.

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One thing I am very thankful for is having people around me who can keep me grounded and don’t let me get ahead of myself. I have always been someone who will try and do the long distance run before I can jog let alone walk so even though I may get grumpy at people holding me back I do appreciate it. Coach Dave at Scotland Lacrosse knows when to reign me in and make sure I just take it easy and ensures I just walk or rest when I perhaps am going full steam.

I have an excitement in my life just now something that I have not had in a long time. I look forward to being able to plan things in advance and not worry that I may need to cancel or not be well enough to attend. I am aware that there will still be times when my lungs just stop me from doing what I want but through this I have also learnt to appreciate life, not take it for granted and just live for the moment.

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