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 tag “hospital”

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! 

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. 

Megan 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 Megan’s Asthma Is that when she is well she is as healthy as the average child. Megan 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 Megan, 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 Megan 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. 

Megan 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 Megan’s attitude. 

So next weekend back to Rowrah karting. Megan has begged all week so thought we would give it a go, she seems back to full health now, until next time!  

   

Treatment…..And moving on!

So the all anticipated appointment has been and gone. The good news is I don’t have to have chemotherapy or radiotherapy. Reason being is that the cancer they found was only small and whilst it still was invasive breast cancer it isn’t enough to warrant any aggressive treatment. The other thing is that it is highly hormone receptive meaning it reacts to hormones and hormones make it grow so to control that I have been given the drug Tamoxifen for 10 years!
I couldn’t Believe it when he said 1″ years, it seems like forever! He says it is because I am young and something to do with hormones so I need to be taking it for 10 years. It’s a hormone blocker so quite a big deal but still the best possible outcome for me.
The downside is that if I decide I want any more children I can’t take the drug while trying to get pregnant or being pregnant. It’s not the end of the world but does mean coming off it for that period of time therefore increasing the risk of the cancer returning. Luckily it isn’t a huge risk but still a decision to be made nearer the time!!
I also had my dressings checked while at the clinic and the consultant noticed I have developed fluid on my back. I hadn’t noticed this at first and it wasn’t really bothering me but since he mentioned it I am really aware of it! I feel like I am a walking hot water bottle sloshing away when I walk which I know is a bit gross! I can go back to clinic and get it drained if I have to but I don’t like the thought of that either so will try bad out up with it for now!
So I am 2 days into my tamoxifen which is nothing when I am on it for ten years!!
So far no side effects but common side effects are hot flushes, weight gain, moodiness! I have all this to look forward to.
So as far as I am concerned now the future is all about healing and getting my life back to normal! Of course this isn’t totally over, I have the tablets for ten years along with side effects, I may need further surgery on my boobs but mainly for cosmetic reasons, then I have the yearly mammograms and worry of the cancer coming back in the future!
So really life is never going to be normal as I know it and suddenly I have gone from reading about cancer in magazines or on tv to experiencing it first hand and all the hassle that comes along with it!!
The other thing this means now is I am going to have to find other things to blog about!
To be honest this won’t be hard as I have so much going on in my life besides cancer but whether it will be of interest to anyone I don’t know!!
I am looking forward to what the future holds and am proud to say I am not a cancer sufferer but a cancer survivor!

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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!

Private Healthcare or NHS?!

I would say the start of all my health issues was April 2013, from that point when I had my first GP appointment till now seems to have been a long & stressful time and yet I’m nowhere even near the light at the end of the tunnel!

My first frustration was that the cancer cells were only discovered as a result of a separate operation that i had actually been advised not to have but pushed for it.
This left me thinking what would have happened if I had not pushed for this operation? I would have not known I had this condition till it was too late maybe!

From the point I actually got the diagnoses of DCIS and told I needed a mastectomy I started doing research on the Internet. The option of going private was always in my mind as I want the best care, surgery and results. But then I thought no, I work hard and pay my taxes and expect a decent surgeon and operation on the NHS.
One think I did do though was refer myself to another hospital an hour away as this had a specialised cancer centre.

So my first appointment with this expert surgeon was yesterday at 11.am but I didn’t get seen till 2.45. Now I appreciate there can be delays but sat on a chair waiting for nearly 4 hours was a nightmare!
Then when I saw this surgeon he wanted to do more tests as there were some key tests hadn’t been done before diagnosing me and telling me I needed this operation. So why has it taken 6 months of appointments and waiting around to now be told I need more tests as some have not been done! And it’s not like I have a cold here or a migraine!
To me this is 6 months spent making errors when I could have started treatment for what could be a life threatening disease!
I am still continuing with the NHS as things seem to be moving quicker one but has still left me wondering if going private would have been the way forward to get things done properly and a lot quicker!!
What annoys me the most is when I have googled DCIS it shows a list of symptoms, I had all of these which is why I first went to my GP. Knowing my symptoms were a big sign of cancer I would have expected a mammogram but only got an ultrasound scan which does not actually show cancer. As a result of that I got told I had inflamed ducts and to leave it for 3 months and to return if it was no better! So I had cancer in me for 3 months, possibly growing and getting worse and the hospital missed this and sent me home for 3 months! Just makes you wonder what we pay our taxes for!!

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