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 M 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 M’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 M. 

So 3 nights in I’m lay in bed yet again without M 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 M 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 a top consultant and 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 M 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 M 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 M’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. M 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. M 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, M’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 M. 

Poor M 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 M. 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 M 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 It is 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!!

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 M 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. M’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 M is going to be the next F1 driver or get anywhere near that point! What we go karting for isn’t to start M’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 M 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 she’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 M 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! 

A bad week

Any parent knows that one of the worst things in the world is when your child is poorly. There’s nothing worse than seeing your child in pain or not feeling well and knowing there’s not s huge amount you can do about it. 

M is now 11 years old and suffers from Asthma on a severe level. It started when she was just a baby and developed a cough that turned into breathing difficulties and a hospital visit. This was repeated twice a year until she was 5 and Asthma was diagnosed. Since then we have at least 2 hospital visits a year some which result in a week in intensive care on machines recovering. 

The thing about M’s Asthma Is that when she is well she is as healthy as the average child. M is very sporty and plays on the school Football team, Netball team, plays cricket and rugby and is on the Athletics and cross country team. Not to mention karting! I am so proud of M, at any point she could have a serious Asthma attack but doesn’t let that stop her doing anything. 

The thing with Asthma is that an attack can happen at any time, and last week out the blue it did. Tuesday morning M woke up and couldn’t breath. An hour later we were in hospital on nebulisers which then turned into spending the week there as her lung function was that low she couldn’t go without oxygen and constant nebulisers. The doctors told me if she didn’t improve we would be going round to the HDU to try and get her lungs working better. 

As a mum it’s the scariest thing in the world to know that your child’s lungs aren’t working of functioning very well. It’s hearbreaking to see her there struggling to breath and relying on the oxygen and trying not to panic as she struggles for breath! 

So a week in hospital then home to recover, not the best week ever but something we are quite used to. I sometimes sit and think what if… What If we are not there next time, what if school don’t recognise the signs, what if there’s nobody to help her next time, what if it’s worse next time? I have to put it to the back of my mind because I will just sit and worry and get in a right state over the reality of it. 

M has told me no matter how bad her asthma gets she won’t let it stop her doing her sports. Most kids these days are sat in front of the TV eating junk food so I’m so proud of M’s attitude xx

   

Band Aid, charitable or a complete con?

This post was written at Christmas and I have just logged on to my word press to see that for some reason it has not posted.  I was going to delete it but then thought actually I will just post it!! 

Charity work and helping others is something I am massively keen on which is one of the reasons I feel so strongly about and am very opinionated on the subject of charity.

so Band Aid…. Some look at all the celebrities singing and think it’s great, pick up the phone and donate. I am quite the opposit and refuse to waste my money on band aid. There is so much wrong with that song!

my first point is that every year we raise millions of pounds for Africa through Band aid and comic relief yet the problem never improves. We get told every year that thousands of people in Africa are dying yet the millions of pounds we raise makes no difference! Maybe the reason is because Instead of helping Africans the money is being invested in unethical companies such as firearms, tobacco, alcohol! Not to mention the money that the executives of these charities get to fund their lavish lifestyles and sports cars!

The next point is that Bob Geldof is worth a reported 30 million yet he thinks it’s acceptable to ask members of the public to “give us your fucking money” and thinks it’s ok to tell people to buy the single even if they don’t like it! If people had spare money to donate to a charity they should be able to pick a charity themselves and donate that way rather than being told to download a song they don’t even like!!

While watching all the celebrities singing the and aid song I wondered how much money all the people in that room were worth! Each celebrity is massively successful and if everyone of them just donated a months wage then Africa would be massively better off…. Or not as the case may be as the money probably doesn’t reach anyone in Africa! The celebrities wouldn’t do that anyway seeming as the reason they take part in band aid is not to help anyone but just to raise their own public profile!!

Has anyone actually listened to the words of the song because I actually find it borderline offensive! To give you an example…..

Do they know its christmas? Of course they know it’s christmas and its quite patronising to think otherwise. I have been to Western Africa at Christmas and visited the poverty stricken areas and despite the conditions and low quality of life the people still managed to come together in their communities and be festive at Christmas. There is one line saying there is death in every tear? And there’s no peace and joy in Africa? Whoever wrote these lyrics has clearly never been to Africa! Yes the Ebola crisis exists and is awful but as is aids, cancer, poverty in England, child abuse and many more awful things in the world none of which we try and fundraise for by singing a song slating the whole country!!

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