Through My Eyes

Some people say I talk too much, that I always have a story to tell. I don't know what's round the corner so my blog is about life through my eyes and making every day count.

And so it goes on 

So out of hospital a week, The bronchoscopy was last Thursday and that went well. It was the first time Megan had a general anaesthetic and she was so poorly afterwards, she had a fever and was quite sick but luckily it only lasted a night. 

Then there was the bank holiday, really good weekend, sunny weather and lazy days in the garden. Then came the bank holiday Monday and Megan’s chest got bad again, starting with the cough then the shortness of breaths and at 5.35 we packed a bag and headed Back to hospital. 

1 night in intensive care later we are back on the normal ward and showing no sign of going home soon. Great half term this is going to be for Megan. 

So 3 nights in I’m lay in bed yet again without Megan at home and it’s so difficult knowing she is at hospital on her own.  We have been doing this for 5 months now and it doesn’t get any easier. Financially it takes its toll with all the time off work, the fuel and extra money spent. It’s also mentally draining, all the worry and stress and then trying to be focused at work as well. It’s so hard, I just want my girl home without the worry of her going back to hospital again. 

Progress

Wednesday the 17th May 2017…. 

picked Megan up from hospital to take her to another hospital for a CT scan, the long awaited CT scan than was going to solve all the doctors problems! Following the CT scan we had an appointment at Newcastle RVI. It was a referral I had requested to try and get some answers. On arrival we parked in the multi storey and were wowed by the size of the hospital. Very modern and  good facilities. We went to outpatients and again were very impressed by the clinic and it’s organisation, everything colour coded and running to time. 

We had been to referred to see Mike Mcean who is the top guy at this hospital and waist a guy he was! We learnt more about asthma in the hour we were there than we had in 5 months of trying to find answers. He brought up other things that hadn’t been mentioned before such as anxiety and worry, something to think about as life as a teenager is never straight forward! 

He booked Megan straight in for a bronchoscopy for a week later and so put a plan in place going forward. For the first time in 5 months I feel Megan might be making progress. It’s the best feeling in the world!

Just shows what a different opinion and different hospital can do! I know everyone at a consultant level is at a high standard and expert in their area but sometimes a second set of eyes on the situation can make all the difference. Hopefully now we will get some answers and be able to move forwards! 

Our 5 month struggle 

And so it goes on… I have mentioned in previous posts about Megan’s asthma causing us problems and how it never stops her doing anything, well 5 months into the year and we are still in hospital struggling to get answers. Ok so we have not been in for 5 months in total but I think the longest we have been at home is 2 weeks.

We talk about her asthma but this could be something different yet, we are unsure. Megan had terrible chest pains in January which we were told were muscular, turns out it was pluracy after a terrible chest infection hadn’t been treated. Since then we have had numerous ICU visits and spent most of a 5 month period in hospital. Megan has had the strongest tablets and anti biotics in hospital and yet the infection and fluid still comes back, builds up then restricts her airways. The hospital seem to be fixing her while she’s in hospital so that her obs look good then sending her home when really we are no further forward! Last time we were out of hospital for 5 days before the fluid was back and straight back into intensive care. 

So where are we now, Megan’s still in hospital on the usual antibiotics and steroids and we have a CT scan booked for Wednesday. I have also asked to be referred to Newcastle hospital to get a second opinion. Hopefully we will get some answers soon although in my opinion this shouldn’t have gone on for 5 months!! 

The hospital is 45 min away so going to work all day then to hospital is tiring. 

For the past 5 months we have tried to juggle work, housework, eating and sleeping and being at hospital as much as we can for Megan. 

Poor Megan hasn’t seen her friends for months or played football or been to school really. She always smiles though and that keeps me going. 

Feeling physically and mentally exhausted but have to keep going and hopefully we will get our life back soon! 

More NHS let downs 

In previous posts I have talked about many experiences with the NHS good and bad, I have referred back to experiences I have had when dealing with Breast Cancer but also experiences I have regularly with my daughters asthma problems. 
So here we are again, being g in hospital is not unusual for Megan. As mentioned in previous posts we have regular trips to the hospital with wheezing and chest issues. This year it has escalated to a new level and a lot more serious. When things get more serious and more life threatening it means I rely on the experts more to help me and Megan and get her the best treatment in the fastest time possible. Unfortunately that hasn’t happened this time and I feel due to massive NHS failures we have ended up back in ICU in a very serious condition. 

Without going into detail of each individual situation I have witnessed so many floors in the system that I wonder why I pay my national insurance. I have witnessed A&E doctors yawning throughout examining patients and complain of being tired. I have witnessed doctors looking at X-rays and missing the fact there’s a huge infection on a lung. 6 hour waiting times in A&E with a girl having an asthma attack left untreated. The list goes on. Its worrying when it takes 10 minutes or less for a child to die of asthma. It’s so worrying and the reality is that it’s not Getting any better, I read on the news weekly about various cuts being made to funding, hospitals being closed, services cut. Staff work all ours for very little pay and then are so tired they are putting people’s lives at risk, I pay my taxes yet it seems the more we pay the less we get. Don’t get me wrong the NHS do some amazing things and it’s not all bad, I give credit to the staff that work all hours and save lives and do wonderful things. Unfortunately I can’t say I have experienced anything positive lately and it really makes me concerned about the future of our health service 

Results are back….

So the 3 month wait for my genetic  test result is over….

Got the letter the other day to say I don’t have the gene that means I’m more prone to getting cancer back. Obviously I’m more at risk anyway but I’m not going to worry about that, the fact it’s not genetic is a huge weight off my shoulders and reduces the chances of it returning so happy days!! 

It’s a good job really because I start a new job Monday and at my interview I told them I’m perfectly fine now. Of course that’s not a lie and i was as honest as I could be but imagine if the genetic test had come back positive and I had to have more preventive operations, that would have been rubbish for both me and my new employer so I’m so glad it’s one less thing to worry about when I start my new job Monday!! 

When my results came in I was so pleased but it did leave me thinking about the people who were opening letters to say Otis genetic for them, it brings a whole new worry in itself and must be so hard to have to deal with that and the revisions that come with it. It’s life changing for so many reasons, some people may be forced to have operations they didn’t expect to ever have, other ladies may want children or more children and genetic cancer can really effect decisions like that. Thankfully I don’t have to worry about that for the time bein but really sympathising with the people that do. 

I’m The start of a new normal!

Defining the word normal is not easy, what is normal to one person is strange to another.

When I got told I had to have a mastectomy I was not upset at all, I was more annoyed at the inconvenience that and in my mind the sooner I had it done the sooner I could get back to normal. You get assigned a Macmillan nurse when you get cancer, someone who is there at any time to answer any questions you have or just for general support. My
nurse said to me that after my operation I need to find a new normal. At the time I thought what a strange comment but it’s only now I fully understand what she meant.

Nights out for me didn’t happen very often but when they did I would be known for wearing the shortest dress and biggest heels! I love clothes so getting dressed up was a real treat!
So New year this year I decided I was well enough for a night out…..2 hours later after trying on 10 dresses I chucked on a pair of jeans and some heels and was ready.
There’s nothing better than putting on a little dress, looking in the mirror at a great figure and feeling a million dollars, going out knowing you will turn heads. Sounds a bit arrogant but give a girl the right outfit and right pair of shoes and they can conquer the world!
Unfortunately that’s not the case for me, I put on a dress now, look in the mirror and just see a deformed overweight frumpy looking horror! When I tell people that’s how I see myself they just humour me and say don’t be silly but it’s not exactly like they are going to agree! The thing is that I know all it takes is a bit of exercise and my confidence will come back but I’m in no state to exercise as I’m still sore from the operation and get a lot of pain so not sure what the solution is yet.
So new year I wore jeans out but I couldn’t wear jeans last night when we attended a racing awards dinner with a dress code.
The dress I ended up wearing was one I never thought I would wear. I bought it online from an expensive boutique but when it arrived I hated it, it looked far too long and I didn’t like the material. I forgot to send it back but who would have thought a year later I would be so glad I had it.
When I put it on I couldn’t believe how long it was, it was knee length, the longest dress I have ever worn! That aside it was the most flattering out of all my dresses and I felt classy and smart all night.
This is where the new normal comes in, a year ago I would never be seen in a knee length dress, all mine were mini dresses some even backless or low cut showing lots of flesh! I can’t imagine ever being confident enough to dress like that again so now I need to adjust to a different look even if it’s not what I normally go for. I need to Make these changes my new normal
So when I get dressed up to go out I still feel a million dollars but don’t have to worry about my scars and war wounds as such being on show!
It’s going to be difficult but hopefully in time this new change will become my normal and my confidence will build back up. Even now when I go shopping I need to get into the habit of looking at different clothes and different styles! I’m not going to be one of those overweight people that wear clothes that look too small for them or show off far more flesh that anyone wants to see!
Its funny because I now realise that it’s not just a case of having an operation then back to normal like I hoped. So much had changed for me. I refuse to let cancer win and take over my life so rather than continue trying to get it s
How it was I need to concentrate on finding my new normal!

Thundersport motorcycle racing awards dinner and the frumpy black dress I didn’t like!!

20140106-023917.jpg

Tick Tock… Tick Tock…

TICK….TOCK….TICK….TOCK

So Life is good at the moment, well all things considered!

We have been living in the house a year now and it is going great, slowly adding our own personal touch to it and making it wonderful!

Megan’s karting is great and we love our race weekends away racing as well as our weekends at home in the garden. I have a lovely family that make me very happy and all is blissfully good!!

So the scene was this…. It was one sunny afternoon, sat in the garden with a cold cider with the BBQ on and the sun on my face, Megan was playing on the trampoline and my Husband Gardening! I suddenly thought how nice it would be to have more children running round the garden! It had never occurred to me before that I might want more children but now that I have almost everything I could want, a family, the perfect house etc I thought actually it could be something to think about. A little brother or sister for Megan, what would she think to that!!

Following the thoughts of cute baby grows and family bbq’s, my mind strayed to my health and my age, Whilst I am only 32 I am on Tamoxifen for 10 years and I would have to come off that in order to have more children. This would not be an easy decision to make. For a start I was advised I need to be on it for at least 3 years! Currently I am at 2 years and 7 months so got a while to go yet before I could even consider it, then I would have to be off it for a while before trying and then there’s the risk involved.

Coming off Tamoxifen would mean I am at an increased risk of the cancer returning. The consultant couldn’t give me any exact figures but just said the risk would be increased. Now I am never one known for playing it safe, If I want something I am normally happy to take a risk to get it however when the risk is my health I can’t rush into anything. I just keep thinking in my head that if I had another baby and then in a years’ time something happened and I got the cancer back then I couldn’t live with myself knowing I had played a part in that by coming off the tamoxifen.

I know it sounds a bit extreme but imagine if it got really bad and got worse and then I left my family all for another baby. I am maybe over thinking it but these are all the things going through my head. Should I concentrate on the family I have got and not be selfish or should I run the risk of it coming back to extend my family further.

These are all things I have been thinking about then to add to it all my consultant says that due to some new guidelines or something I now fall into the category of genetic testing to see if my cancer was caused by a faulty gene! I will write another blog post on this as it’s a whole new drama in itself but it gives me even more to think about as could seriously affect decisions over having children. I am currently waiting for some genetic test results to come back but trying not to think about that at the moment!

In an ideal world I wouldn’t even be having this dilemma now and would just go with the flow and see what happens but in the back of my mind all I can hear is Tick Tock Tick Tock which is the timer running down as I get older and my window for having more children gets smaller! I am only 32 so maybe need to calm down a bit as I have a few years yet but time seems to go so fast. I Didn’t worry about age till I hit 30 but now I’m looking ahead to 40!

I did put some posts on a forum to speak to anyone that has been in this situation and come off Tamoxifen to have children but not a lot came back. I have spoken to some people at work who are a little older than me and they say they wouldn’t even risk it for more children and that’s it! Bearing in mind they all have more than 1 child and wouldn’t have any more anyway irrelevant of any health risks! They have very little understanding of how I feel. I always imaged I would have 3 children and whilst I am very happy with the family I have I do feel that maybe there’s an option for more?

So the saga goes on, In 5 years’ time I might look back at this smiling with a baby or I might be in a totally different situation. I have learnt over the past years not to plan too far ahead and just to go with the flow and take every day as it comes!! Or at least that’s what I try to do!

 

Always in the back of my mind….

I think no matter how fit and well you are, or how wonderful life is once you have had a cancer scare it’s always in the back of your mind. The happier live gets the scarier it is that it could all be taken away. 

Obviously mine was more than a scare, I survived it and an here to tell the tale but I always wonder what if. So many people are cancer free for ages then it comes back with avengence! 

I watched a film called missing you already the other day about 2 friends one of which gets Breast Cancer. Other than the chemo side of it I could relate to her story. What I couldn’t get my head Round is when her cancer came back and she knew she was going to die. I was sat wondering if I elms prefer to know I was going to die and be able to say good bye or if not knowing would be better do people don’t have to deal with the run up to it knowing what’s going to happen. You hear about people having a bucket list which I understand and totally get however my bucket list would just say cherish every moment with my family. I don’t need to go jump of a bridge to tick a box on a list. To me I would just spend every second of the day I could telling my family I love them. 

The films was so sad and has me in tears as normal. I think because it’s quite close to home anyway but it starts Making you think about life and making the most if it, cherishing every day and most of all telling your loved ones that they are loved every day.

 3 simple words, I LOVE YOU could make all the difference to someone’s day. 

Being a karting mum 

I think people get sick of me talking about karting, it’s all I ever talk about. I have to try and remember that just because something is interesting to me doesn’t mean it’s interesting to anyone else!

It’s hard being in the paddock sometimes as a karting mum. Everyone thinks their kids are the fastest and the best and can do no wrong. Everyone (or most people) are proud of their kids. A child doesn’t have to be sporty, have a fantastic talent or achieve much to make their parents proud. For me it isn’t the karting that makes me proud, (let’s face it Megan isn’t exactly winning British championships!!) but the attitude and ambition of someone so young. Most kids at 12 don’t have a care in the world and if they are not out causing trouble at the weekend they are say bored at home. Megan’s wishing the next year away so she can turn 13 to get a paper round to help pay for karting! And in her spare time if we are not racing she is sat watching you tube videos of the circuits she will be racing at this year. 

I am a realistic karting mum, I don’t think Megan is going to be the next F1 driver or get anywhere near that point! What we go karting for isn’t to start Megan’s motor racing career but more to give her as many opportunities in life as we can and to show her that you can achieve anything if you work hard enough at it but nothing comes easily and if you want results you have to work for them. I think it’s also important to show young people there are more choices out there and you can do something good if you want, obviously at 12 a lot of influence and opportunity comes from the parents but I think kids in sports are good role models for other kids. 

I have very little use on race weekends, I tried to put the tyres on her kart once and put the back ones on the front!! Oooops! I think my main purpose is just to support Megan and cheer her on, even if she isn’t doing that well. Being away every weekend as a family doing something we love is the best thing in the world and we need to make the most of it while Megan’s young!

So now we have started something with karting that we can’t just switch off, we have got the racing bug again and every time we go out it gets more expensive! Always planning the next race meeting or next test weekend not to mention the ongoing need for kart parts and tyres! 

So this year it’s no shoes and clothes allowance, no summer holiday and a lot of overtime!! Realistically we can’t do this forever but you only get once chance at life if we can give Megan a few years of her living the dream then it’s money well spent!! 

The world is a scary place

so we decided to have a family holiday this year and go somewhere a bit different, we normally go to Spain! So I got on google and had a look around and a place called Oludeniz came up in Turkey, looked beautiful, bright green sea and white beaches sold it for us! The week after we booked we were at racing when someone asked if we had seen the paper as there was an article about Turkey being on high alert from a terrorist attack and British tourists were at high risk! So typical, we book a nice holiday then get scared into going! I decided not to let it worry me and then a week later the Tunisia terror attack happened……

It’s a bit of a wake up call when terrorist attacks happen and especially ones that involve British people. It’s a horrible reminder of the evil in the world and that nobody knows what’s round the corner. I live in a very small town with very little crime and not a lot going on and to see British people like me getting shot on the beach on holiday is so scary. I can’t even find the words to describe it. It’s devastating and heartbreaking to think that those people were relaxing and enjoying the sunshine not knowing what’s around the corner. It must have been so scary being in that situation, in fact I can’t even begin to imagine it. So that’s Tunisia tourism ruined for a long time. And the cause of it…. Pure evil, people that have possibly been brainwashed or people that just genuinely believe they have a good reason to kill innocent people, it may be religion, beliefs, revenge for something, politics, war, or other reasons that we may never know. One thing I know is that I will never understand it and never come to terms with how someone can just end an innocent persons life. 

The reality is though that this is the real world and this is what happens and worse. This is the world we are bringing out Children up in and the world our grandchildren, great grandchildren and future generations are living in. As long as we live in our little town out the way we feel a sense of safety as if we are out the way of it all and unlikely to experience the terror going on in the world. 

So everyone is saying they wouldn’t go to Turkey and wouldn’t book a holiday in a Muslim country because of the extremists. I don’t think you can blame Muslims, yes religion plays a part in this but there’s good and bad people everywhere and I don’t want to hide away. In Tunisis the hotel staff that were Muslims tried to stop the gunman and risked their lives doing it which just shows that there’s as many good people as there are bad and you can’t judge everyone basedon obe persons evil actions. 

Oludinez looks beautiful and a fantastic part of the world to visit. Turkey is on a high alert but then so is France, Spain and England. Is anywhere safe? Probably not, if these extremists are going to attack us then it could be anywhere and could happen anywhere. If we stop visiting these countries then they have won. There are good and bad people everywhere and attacks can happen anywhere in the world. Obviously it’s going to be in our minds when we are abroad but we just need to go and have a great holiday and not let them win by scaring us out the area. 

I just think it’s such a shame that this is now the world we live in and it’s not just a small group of people but a billion dollar army of nutcase extremists that are willing to die for what they are doing and what they believe in. The scary thing is that when they die they want to take as many innocent people with them and there doesn’t week to be a lot going on to stop them! Although what is going on in the government and military is way above my intelligence level! 

So a week from now we will be in Oludinez wondering what all the fuss was about and having a fantastic holiday! Or at least that’s the plan! 

Post Navigation