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.

Archive for the category “Life”

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. 

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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! 

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

   

Is Gullible the same as stupid?

While watching Celebrity Juice with Joey Essex my husband and I were laughing at how little he knew about stuff in general, he didn’t know where Danish Bacon came from, What country borders Wales, the name of Jesus’s mother! Now while I was laughing thinking what an idiot I then began to think of all the things I have said that could be classed as thick, stupid, dumb etc etc.
Now I don’t see myself as thick or stupid, I work hard at everything I do and succeed yet I surprise myself every now and again with the comments I come out with. Some could be classed as stupid perhaps but a lot are due to me being a little bit (or a lot) gullible! People can tell me things and sound serious enough so I will believe them!
People say to me I could write a book with all my comments! So Here are a few, is it just stupidness? Gullibility? Just plain dumb or a bit of all the above?!

1) while visiting Anglesey race circuit right by the sea which contains 2 big wind turbines I say ” I’m sick of it being windy, I wish they would turn those stupid Fans off!”

2) “Do they have to close the motorway to change the bulbs in the cats eyes”

3) After seeing a flash range rover with Kahn written on the back I got very excited that Amir Kahn must own it & insisted my husband followed him to see where he was going! My husband obviously made me aware of my mistake!!

4) Walking round Osmotherley Reservoir I had my head facing the sky the whole time trying to spot the apparent Honey Bears my husband said lived in the trees!!

5) Blubberhouses Reservoir in Lancashire is named that due to all the whales in the reservoir…. Or so my husband told me!

6) Oh great it’s raining and it’s that annoying rain that gets you wet!!

7) while arguing with my husband – “stop picking at hairs” he told me the term is stop splitting hairs, still not sure what it means!!

8) We can’t put the new tumble dryer in the conservatory as it won’t have access to the water pipes!

9) What trains have Wheels? I thought they were like Scalelectrix cars on a runner thing, iv never seen a train with wheels!!

10) Are Charlie chaplain and Hitler the same person?

That’s just a few things on a long list of things iv either said or believed to be true! But I don’t see myself as thick, then again I suppose Joey Essex doesn’t either and he doesn’t know how many sides a square has!! I think it’s fair to say I wouldn’t be the ideal candidate for the pub quiz team! I find I am always the person who doesn’t get jokes, well not straight away but maybe a few hours later the penny drops and I suddenly get the joke and laugh out loud when it’s not actually funny anymore!! Or sometimes I just laugh even though I don’t get the joke!
I would like to think while I’m sat laughing at Joey Essex people are not doing the same thing every time I open my mouth without thinking first!!

Paul Walker – Died doing what he loved

I woke up Sunday morning to the news that Movie star Paul Walker had been killed in a high speed crash as as passenger in a Porsche GT. Then I looked at the articles on the Internet I was faced with horrific pictures of a crash scene and a mangled car completely burnt out. Very shocking scenes.
One of the first things I thought was a great feel of sadness followed by the irony that Paul was Famous for the Fast and Furious films performing dangerous driving stunts and driving at speed and then this is how he came to the end of his life. My second thought was that I hoped the impact killed him instantly as being trapped in a car on fire doesn’t bear thinking about at all.
It’s quite strange how the mind, and people think, and work. People die every day in car accidents and 9 people died the night before when a police helicopter crashed into a pub but Social networking sites were full of tributes to Paul Walker. He wasn’t actually the only one in the car either, Racing car Driver Roger Rodas was the driver yet his name doesn’t really get a mention either. I am not criticising this really as if I am honest all I could think about was sadness for Paul Walker but I think it’s interesting how because he was a well known celebrity it’s almost like we knew him and mourn for him more than any of the just as tragic deaths over the past few days.
That aside though it is very sad to be taken so suddenly at just 40 years old leaving all his friends and a 15 year old daughter behind. It makes you really think about life when something unexpected like that happens. He was a healthy man living life to the full and then out the blue suddenly he has gone.
Nobody knows what’s round the corner and I don’t think people should assume they will live till their old as you just don’t know.
Obviously I don’t mean walk around thinking your a ticking time bomb but at the same time if you have a dream, an ambition or a plan then don’t leave it, if you have family or friends you don’t speak to or people you don’t see as
Much as you would like then now is the time to do it, you just never know when it’s going to be too late.
I saw a statement online that Paul Walker said once – “If one day the speed kills me then do not cry as I was smiling”

Rip Paul Walker and Roger Rodas

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Life isn’t getting back to normal as quick as I’d like!!

So it’s been a week or so since my last appointment at hospital, this was the appointment where I was pretty much told the worst is over and just to get better now, I was also prescribed the drug tamoxifen for 10 years which I have since started taking. So to me things were looking up, no chemo needed, no radiotherapy, just a tablet a day along with my painkillers and I will soon Be better!
They say you shouldn’t wish your life away but I really want to get back to normal and put this whole cancer thing behind me. That’s the attitude I have had throughout. Rather than feel upset or devastated I have remained positive throughout, in fact I have not shed 1 single tear over it. Everyone says it’s life changing having cancer but I didn’t see it as a life changing thing, to me it was a complete inconvenience that was interrupting my life and the sooner it was sorted the sooner I could carry on as normal!
My life was so great before this happened, we were away racing motorbikes or cars every weekend, I have a job I loved and had just been offered a promotion and we were starting to decorate our little house to get a bigger house next year and then after that maybe look at having more children!

The funny thing is that I have done everything in my power to not let cancer drag me down, even when i
felt so rubbish after the operation I still managed a smile, yet now after all that I am on the road to recovery and feeling lower than I have throughout the whole thing! Really I should be happy now!

I think reality is setting in that recovery is not an overnight process and my life isn’t going to be back to normal as soon as I would like. I have developed a thing called a Seroma where I have fluid on my back under the skin am sloshing around like a hot water bottle! I was hoping this would go over time but it seems to have got worse so I am going to have to go to the hospital and get it drained!
The Tamoxifen has started to have side effects now, I feel quite moody (more than normal) and get these awful hot flushes that are horrible! I get so bloated as well oh and I’m quite tired yet can’t sleep and feel a bit sick on them.
I tried a trip out to the metro centre yesterday for a bit of Christmas shopping and after half an hour was so hot that I felt sick then my back started throbbing and I had to sit down then go home!
It’s been 4 weeks since the operation and I hear about so many women who are getting back to normal and I feel I should be doing more now but instead I just can’t get out of bed on a morning and have no motivation to do anything! I feel I should be looking to go back to work soon or doing something productive every day but I just feel stuck in a rut!

I am such an active positive happy person so for me to feel like this and want to stay in bed a day in unusual and I hope I snap out of it soon! Maybe once I have my back drained that will help the pain and then I hope my body gets used to the tamoxifen so the side effects ease and then maybe I will start feeling more positive!

More results and news!

So I got a letter through the post with an appointment for the 3rd Dec. I didn’t understand this at all, surely I couldn’t be expected to wait till the 3rd Dec for results?!
I rang my point of contact (the breast care nurse) straight away and just got voicemail. I then spent the rest of the day ringing her, the ward, the clinic and every number I had but nobody picked up. It was 6.30 pm when I finally got hold of her. She didn’t know anything about the appointment but said she could look on the computer for my results.
So here we are, the results!
She started reading them out and it was all medical terms I had never heard of, I was trying to write them down to google when I got off the phone! The main part of the results is that they have found a small area where the cancer cells are not in the ducts anymore so now classed as invasive. The good news is that the areas were very small and only grade 1.

It was quite difficult being told this over the phone because as much as I wanted to know, it was the nurse telling me so not the consultants so she couldn’t answer a lot of my questions. I will have an appointment next week to find out what treatment I have to have following this new discovery.

Whenever I tell anyone the new results they are all so positive which is good to be but sometimes I don’t think they actually understand or have a clue what a big deal this is!

The funny this is though that I am actually struggling to say the C word out loud! Is that normal?! I mean before these results I was telling everyone I had DCIS, so when people asked me I explained I had DCIS and did not even mention the word cancer! Now it’s invasive I need to face the fact that it is breast cancer and try telling people this. Someone asked the other day and I started talking about DCIS and invasive and Allsorts and they looked so confused! I am sure if I just said Breast Cancer then I would have made more sense but couldn’t say it!

One way I have found some support is in the way of a Facebook group aimed at younger women with breast cancer. I joined this group but didn’t expect much as I have joined forums before and not has many answers to my questions and posts. The first thing I liked was everyone saying welcome to me, I thought this was so nice. I then started looking at the people in the group and the people replying to me, as strange as it sounds the people were like me, they were young and pretty (not saying I’m pretty) and spoke like me like on the same wavelength!
When I was in hospital everyone on the ward was at least 50 years old, now I’m saying it is any easier getting the diagnosis as am older woman as it isn’t but I felt like I was the odd one out and on the wrong ward!
So I start posting in the group and I got so many replies. I have only been in the group 2 days and feel like I’m part of something, like I’m not alone and; these women are so easy to speak to and so nice. I am really glad I found this group.
So the wait goes on, only till next week though to find out what treatment I am having.
Despite this bad news I still feel ok, I don’t feel like crying or being negative, yes it’s worse than the DCIS but it’s only grade 1 cancer so perfectly treatable. Yes it’s not great but there’s a lot of people that I have met throughout this journey that are a lot worse and so I’m not going to get down about this and make a big deal out of it!

Swelling, Bruising & Scars!

So it has been 2 weeks since my operation. I have read on some forums that some ladies are ready to go back to work after a few weeks and things are back to normal but for me I am nowhere near that point!
From a pain point of view I am much improved and I feel more discomfort now than pain. Trying to get cosy in a chair or bed is not easy! From a Breast point if view the new boob seems fine, it’s a little on the large side but I have been told the swelling will go down a lot. It is also covered in bruising so not very attractive at the moment so it’s best to just not look in the mirror at the moment!
I have pain in my left arm and very little movement in it, I have been told I need physio for this at a later date but not something I need to worry about now!!
I still feel completely unattached to the new boob, I don’t feel like it is mine or a part of me, I feel like it’s just this big thing that’s stuck on the front of my chest but not like a part of me if that makes any sense! I am hoping over time this will change!
As far as my back goes it is quite a scar but will fade over time and is very neat. Some people don’t like scars, they try to get rid of them and hide them, I do understand that but for me I will be wearing my scar with pride. It’s right across my back so not like I can hide it in a bikini but even so I see this as something to be proud of. To me a scar is a sign of bravery and being strong not a sign of weakness and something to be hidden. This whole experience is a big deal and a big part of my life and the scar represents that.
I have attached a picture to this post and I am sorry if this offends anyone as it’s not the nicest of pictures. I thought I would post it though as It is significant to this post but I am sorry for anyone that does not like seeing wounds and scars and things!!

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A Nightmare day!

12th November 2013, my appointment date for the clinic, the first appointment since the operation and first time out the house.
Since the operation I have been at home, hair scraped back and Pyjamas on, not to mention the drain iv been carrying around that is attached to my back so not very attractive!
I thought I would take the opportunity to make an effort, put a bit of make up on as besides the fact my consultant is a bit of a dish I wanted to start looking and feeling better about myself! As we left the house I grabbed my appointment letter and off we went.
As we got to the hospital I had a quick look at the appointment letter and it said Tuesday the 22nd…. What?! It’s the 12th and here we are at the appointment! I felt like such an idiot and couldn’t say sorry enough to my mum who had driven me. As we were in Leeds we decided to make the most of my mistake and go shopping! Not something I would recommend anyone does a week after a large operation while still having a drain attached! I tried to keep the drain in my handbag but still got some strange looks!
After about half an hour and a few new outfits later the phone rang… The hospital asking where I was?? Now I was really confused, we had got to the hospital thinking there was an appointment today only to check the letter and it say the 22nd?! I got the letter out my bag again to see it said Tuesday 22nd October, not November! I had only brought the wrong letter, an old appointment card! I felt like such an idiot, luckily the hospital agreed to fit me in and see me but by then the dishy consultant had gone home so it was left for the nurse to take my drain out, check my dressings and give me some results!
Now I would love to be able to explain the results I really would but if I’m honest they didn’t make much sense and were pretty much inconclusive and awaiting further test results! So really there were no new developments and I have to wait until next week for any certain results! I would have rathered they just didn’t tell me anything rather than say the results are inconclusive as that only puts more worry in my mind for a week till I know for sure!
What a carry on I had but the good thing is that I got all my dressings off and got the drain out which makes life at home a whole lot easier and more comfortable!
I just need to wait for the results now, more waiting!

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