Sunday, 23 May 2010

Bring on the Weather

Wasn't it wonderful to sit out in the garden and feel the sun warm those tired bones.  Trouble is when you're at home you don't sit long enough to catch the rays, you are constantly up and down, in and out swapping washing over or refilling the dog's water etc.  The mornings have been the best, I was up with Lexi about 6.45 and the sky was that beautiful blue, not a cloud and it was lovely and warm.

Having another round of insomnia again, although by 4am I am usually falling to sleep and don't want to be up when 8am comes around.  Since the chest episode last week my eyes are constantly wanting to drift off but then if I allow them to I probably only get 10 minutes.  I mentioned my Brother having a bad chest too he went to see my chest guy and he was questioned about asbestos etc.  Dear God I hope that he doesn't have this too, he is getting a CT Scan and my heart will be in my mouth until his results are in.  He has fluid again on his lung, it could be caused by the MS as his body muscles don't work like they should or it could be an infection either of these two would be good as I couldn't bear it if it was mesothelioma.

I am unsure about what is happening with my own body, since last week I have had a strange pain hanging over my heart area, trouble is I have had pain there before so can't say whether its a different pain or the same type of pain.  My echo has been organised via my GP and takes place back end of June, hopefully I will be back to my joyful self. 

I shouldn't complain at this time as quite a few of my close meso circle are having a rotten time of things, Two are going through Chemo, one is wondering what he will be treated with and K has been knocked back again with another chest infection setting off fluid on the lung etc.  I wonder why with one good lung still working we end up having problems getting oxygen ... surely someone out there could answer that.

My eye's are closing so am going to make this one short, I just hope that we get some good news and I can post something that will bring a lot of cheer to our heavy hearts.

Tuesday, 18 May 2010

Feeling Better

At last I am back to getting to where I was before having to spend time in the hospital.  I have lost weight (again) and after seeing how bad the elderly ladies looked on the ward I really want to get some beef on.  Most people would be over the moon to loose another 1lb or two but since going on hols I have lost 3 lbs, which I just can't afford to loose.  My skin is starting to look like my mothers, muscle deterioration etc doesn't do you any good what so ever.

My brother Nev is also really ill with a chest infection, infact I am starting to worry whether he has meso.  He already suffers from MS but for the last 10 days he has also been plagued by a bad chest, thinking about it his chest never seemed to clear up from last year when he had Swine Flu.  I can't believe he hasn't been put in hospital on the Respiratory Ward because he doesn't sound good.

Thank God I have Dr Owens to email and ask stupid questions of, this heart thing really knocked me, As usual his calm and reasoning came through on his reply.  I have been taking my blood pressure again and it is back on the low side, 101 over 65 this is healthy if you exercise but not sure which category it puts me in!  The dizzy spells are happening again in bed.

I also heard from Karen last week, she sent a short note  passing on the sad news about her father.  Unfortunately he lost his battle against this cancer.  I am pleased that he did feel some sun on his body recently.  I know that Karen and her family are still in shock because he went downhill rather quickly and on behalf of the meso circle we send them our thoughts.

I have met a young guy who lost his wife to cancer at the age of 29, leaving behind a very young child.  It is 2 years since she died and the pain is as raw in his eye's now as I am sure it was the day he lost her.  Although the cancer isn't meso it is again a rare cancer and I have asked if he would write her story so I can post it on the Website.

Speaking of Website's our friend's partner in Dubai has offered to enhance the website and help sort the database so to collect info.  I must get it sorted shortly.

Time is ticking on and my eye's are getting tired so will end this blog for today.  Have had to change the office around and am working on wifi because Bear ate all my network cables, so my email won't let me send out and because we have 3' stone walls the wifi keeps crashing! ~Guess another problem for another day.

Keep strong meso mates, when you start to falter on this pathway we have ahead, close your eye's try to imagine the sun high in the sky, the sound of the sea in your ears and fill up with new energy.  We all have such a terrible fight and that's usually just with the Doctors! 


Friday, 14 May 2010

Hospital Stayover because of Mesothelioma

I never thought I would end up in hospital due to a cold so all of you out there, don't waste time wondering should I go to the Doc's or not.  I went to bed Wednesday night a little tight chested and felt like I wasn't getting any air to my lungs, On Thursday I awoke with a panic attack as I just couldn't breathe, well not exactly a panic attack but this awful feeling.  I asked hubby if he would make me an appointment at the doctors and because I just didn't feel well I stayed in bed.  He came back up an hour and a half before the appointment with a cuppa but I still didn't want to get up.  I told him I would forgo a shower (which isn't me) so he suggested calling an ambulance and I wasn't impressed ... you know the "why do I need an ambulance  I just have a cold blah blah" really I should have called an ambulance at 6.00 am that morning, in fact I should have made an appointment last Monday with the Doc and all would have been well.  We arrived at the doc's who turned us around and sent us directly to hospital.  They in turn checked me over and after a few tests  sent me onward by ambulance to the main hospital at Darlington.  Normally I would be kicking and screaming but I just couldn't be bothered, I hurt and even more I was scared, this not being able to get my breath was a worry and although it only lasted for a short while it gave my imagination to much to think about. 

To be honest I think during the day I was having strange dreams and although I knew I was dreaming when I was normal I felt that something in these dreams was important or had something to do with what was going on.  At least that was the sensation I kept getting and even now as I am sitting here I feel the same. 

This morning after spending the night on oxygen and having steroid's fired up my nostrils at 530 miles per hour I felt fine, infact I was helping (or hindering) the ladies being the youngest (nearly 50) on the entire ward of 29 beds! I felt somewhat of a wanted person early on when a young Trainee Doc asked if he could do his assessment on me, then I met another Doc who had heard of me through the Meso meetings etc, of course I was trying to convert them to take an active interest in mesothelioma! The decision was made at 8am that all being well I would be on my way home by lunch.  Well what happens, you all know once you get in you can never get out, that's why I hate hospital's so much. The amount of time you hang around waiting for your mam or dad to be discharged.  Anyway it was my turn, I was leaving (well waiting to leave and as usual pharmacy was holding the job up) then along comes Ann who says that my ECG shows I have a problem with my heart, she says "we know it was there in 09 because you had heart failure and an ECG was taken" but is my heart showing a problem that could have been there for a while was it just an abnormality because of surgery or is it something more sinister?  I saw one of the Chest Doctors (although I wasn't admitted under him on this visit) who told me the lining has thickened, there was talk of an embolism (thankfully it isn't).   So where am I now, well I am home, taking horse tablets for the infection but need to return for further heart discussions and also to return back to the chest clinic.  All I can tell you is that I am totally worn out and will debate further on this tomorrow.

Sunday, 9 May 2010

Full of Bugs

The week has flown by, work was busy and I ended up working everyday till at least 2.30, and even started earlier, never later than 9.00.  Yesterday we were going to look for light fittings for the extension (that hasn't progressed and is in the same state we left it 2 weeks ago).  I didn't feel right but thought "Once we get out I'd be ok", no such avoiding hubby's scrutiny he knew I wasn't right so instead he turned me round and sent me for a lie down.

I emerged some 2 hours later, but I didn't feel right.  After tea still felt a little off but put it down to lack of fresh air, it has been so windy here that I know my breath wouldn't reach my lungs in it.  Got to bed and for the first time in a long while I was scared, I felt terrible but didn't know why then I started throwing up, I didn't dare climb into bed for fear of throwing up all over so stayed by the toilet freezing for quite a while.  When I did climb into bed but I felt like my lungs couldn't get enough air into them, my stomach was producing adrenaline, my head was pounding and I just wanted to roll over.  It brought me back to the first few days of surgery. 

You know that if you can sleep through it you will feel better and time is a wonderful healer, but telling yourself that and being able to do it isn't always easy.  I couldn't settle, I seemed to be up and down every hour peeing and my ribs ached.  The blood from vomiting was all I could taste and this uneasy feeling.  I got out of bed at 9.30 and came downstairs, I had  a drink then turned round and went back to bed.  Noon was when I finally surfaced but still feel off.  I know it will be a bug of some sorts, plus my nose is now streaming, but it was frightening.  We are human and can come into contact with normal illness but I can't every remember feeling this rotten even with a cold.  All I hope is that tomorrow I will feel better.

I hope by tomorrow the worst is over but my temp is still 36.1, funny how I always go down when I'm ill, I use to go right down to 34.1 when the meso kicked off and was once told this was impossible .. well seems the impossible always happens to me.  I did have a fear thought of the meso was starting to do nasty things, after all it will be a new ball game for me when it does, I have no idea how the pain or the symptoms will show themselves as all the old areas have been removed ... just hope and pray that that is a long way off before I need to think that way.

Hope this bug doesn't catch up with any of you guys, I truly believe I have man flu for the first time in my life, I really can't be bothered to do anything or want to.

Sunday, 2 May 2010

Sunshine Was Great

After the flight of 7 plus hours then the circling at Dubai airport we finally arrived.  I must admit the circling at 5000 ft + did cause a little pain but overall the only aches I really had were from sitting or lying at a funny angle and the left side felt like the corset was well and truly bolted to my ribs.

Our first day I decided to lift the MST to 130 morning and night and it did give some extra relief but the best was the sun, by day 6 I was starting to feel great, unfortunately that was our last day, but for the first time in too many months I actually felt what it most be like to have no pain!

We met up with Benet and finally we met her partner, we were beginning to think he was a ghost and didn't really exist, but no he managed to escape work early one night and we all went to dinner.  I had hoped to meet up on our last night but by the time we left the beach and packed I was ready to crawl into bed, 3 am wake up calls aren't my favourite.  That's the other thing I get frustrated about, once over I could be up, showered and out within 30 minutes, these days its at least 90 before I have got my body in some sort of working order.

We did have one night where I had felt terrible all day and ended up going to the room and just doing nothing.  The humidity didn't suit me like it use to do and I did feel breathless a little but overall I still managed a couple of walks a day and enjoyed them

I was even shocked that I went into the sea, obviously my scar will really benefit from this, salt water is a great healer.

So I haven't exploded and hopefully my body will go into overdrive on the repair route, the only thing was when we came home our Lexi had been at her bottom and was rushed to the vets.  Bear has grown and for the first time since having him he wants nothing to do with me, hopefully in a day or two he will forget that I left him for a week.

All that leaves is start working out where we will go next ......