Friday 31 December 2010

Ring in the Year

I just had a peep at what I wrote last New Year and believe it or not I haven't done anything that I said I would try and do.  I do keep procrastinating I have come to think this is normal for everyone not just me. 

Examples:
 I had an email over Christmas from an old colleague who had prostrate cancer last year and I promised to visit, he is now back abroad working! 
Going to more meso meetings - haven't managed one this year
Doing more with friends - hum
Working Less - kind of achieved

But seriously we all treat life the same, we make demands on ourselves that we just don't keep, we promise ourselves we will find time, but time doesn't slow down infact I am finding it goes faster.  I use to be able to accomplish all sorts of things during the day, these days it takes me 90 minutes to pull round on a morning, if I had to rush I don't know what I would do.  I guess age also comes into it but I am only 50 and should be a lot fitter than that.

I am so lucky to still be alive and I do count my blessings about that but sometimes I don't act like it.  I hate pain and I hate mornings when I wake up and feel crap-my mam says she feels like that everyday but she's 84.  After having her stay for a couple of days it frightened me, am I as negative as she is.  It was hard work with her and I hope that I'm not so hard to deal with should my health take a downward turn.

To ease my pains the last couple of nights I have taken temazepam to relax my muscles and  have woke up with less pain which in turns makes me feel much brighter, albeit, I rose much later than usual.  I don't want to go down the route of taking tablets to feel fitter on a morning but they certainly helped me yesterday.

I remember when I use to go through my 3 monthly sessions and I dreaded the thought of coping with them in my elderly years and I use to wonder how people with joint pains carry on day in and day out, but you have no choice.  Life is so precious yet what do we really do with it? 

My cousin never wanted to live over 50, unfortunately she got her wish and died at 49, she said she never wanted to get old, I on the other hand don't want to be old and in agony but I do want to get old.  The thought of not being with hubby and the dogs, watching the snow fall or sitting in the sun reading a good book is unthinkable but I am still not doing enough with my life.

On that note lets hope that 2011 is the year that I actually start to do more and accomplish all those things I never seem to find time for.

Wishing you all a healthy and happy 2011
Jan

Monday 27 December 2010

Survived the Day

I don't know where I managed to get all my energy to keep going over the last couple of days.  My mother can drive a saint to distraction and she was staying with us for Christmas.  The first day was trying and every time we left the room she would start shouting "Jan".  I don't think I have done so many rounds in our house for a long time.  Christmas Eve she was calling out at 5 am for a drink, thankfully in a way she did as I discovered we had no water!  Hubby and I stayed up trying to get an answer on the NWL hot line but we had a recorded message played for some 90 minutes, I ended up leaving him to it and returned to bed.  Nevertheless, we were up again at 8 as we had dinner to do for the family.  Thankfully we had filled pans of water with what was remaining in the taps and by 9 the water was back on.

Lexi decided she wanted her presents before anyone else and started hunting around the tree for anything that smelt like food, Bear didn't bother as he didn't understand what the excitement was all about.  With gift in mouth Lexi took great joy in ripping off the paper and breaking into .. thankfully .. one of her own bones!  We gave Bear a present to open and he didn't have a clue but after Lexi continued with opening a few more he seemed to get the jest and started on one himself. 

By the time I got mam up, washed and dressed and settled downstairs the time was 11.30 and time for Adult presents.  Dogs were sorted, veg's prepared, Turkey had been cooking slowly since 10.30pm Christmas Eve and was looking good, the Pork had gone in at 9.00 and we were on schedule for 1.30 pm lunch.  Gary's family arrived early and we were still cooking, it was a great family occasion though and we both enjoyed spending it cooking. 

I hope you all managed to have a fabulous Christmas, for me it was another one I shouldn't have had which makes a difference.  I can't believe it is only two years in January since surgery but I certainly feel like I did more in 2009 than I have done in 2010.  You do forget how valuable your life is when you start living normal again.

To all of us I hope that we have a health 2011 and that the worry of mesothelioma stays in the back of our minds while we get on with living.

Tuesday 21 December 2010

News from America

Debbie and I received a wonderful email from Linda in the States to let us know her sister has done well since having surgery and is now ready to undergo radiotherapy.  None of this would have happened if she hadn't found Debbie's site and email address and Debbie then put her in touch with me.  This is why Meso circles work, we are all there to help.  We have some choices these days, but as we all know from experience they aren't always broadcasted by the doctors who are treating us.

On another bright note I found out on Friday that my Heart is actually better than it was earlier this year but on the otherside of the coin I still haven't any answers to what is going on in my chest area!

As for Christmas, apart from getting most of the cards done (am sure I missed the deadline for abroad) and have picked up a few things I am well behind.  Hopefully will get some time on Wednesday to do a little shopping!  The thought of going out into the cold is what is stopping me .. I am such a wimp!

We did get the trees up on Sunday and I thought Bear would be in among them pulling at the decorations.  The first time he went to sniff one Lexi have the upper lip so he has stayed away.  Our Tyke use to get so excited when the tree went up and would start being on guard over it, she knew that presents were on the way and she loved opening all of her own.  In her later years she started opening ours so we had to keep them all locked away until Christmas morning.  She was amazing to watch as she tore through the wrapping paper and peeled it back to pull out what was inside.  In Tyke's day Lexi didn't really bother but now she has gone I think Lexi will become like her.

Thanks for the comment about stairs and newfie's, but the steps are outside (3) in the garden, which bear always seems to want to trip up on. 

Must get started on Christmas

Jan

Wednesday 15 December 2010

Heart Scan

Am I pleased to be over my chest infection, but stupid me will probably have a cold again by Friday!  I had to go to site on Monday and Tuesday and you know how cold the weather was.  2 Hours I spent on site and apart from standing in the cold shell of one of the houses I was up and down 2 flights of stairs constantly.  On my final trip up and down I felt dumbstruck.  I couldn't talk, I wasn't panting but I felt like I had nothing coming in or going out.  It took about 5 minutes before I could find myself uttering a word.  One of guys who was on site with me is fully loaded with cold today - I am just praying I don't get it back otherwise I'll have hubby giving me what for.

Tomorrow, all being well, I hope to finally get my tooth fixed, this repair job has been on hold since last May, then when  finally got back to the dentists I had another problem so he fixed that, I had to cancel the last appointment again because of my cold so hopefully tomorrow my shattered tooth will have a nice new filling and have no holes.

Friday I am going to hospital for these heart tests.  I am just hoping they are doing one of the ultra scan tests for the pressure, dear God if I had to go on an exercise bike I think I will struggle, and if they put me on one of those running machines I will be flat out and they will need to revive me!

I finally revamped the website and put Karen's and Hilary's pieces on, so am quite chuffed with getting something done.  I haven't had that much new information to update anything else but it did need a bit of a spring clean and hopefully the buttons work this time!

Bear has managed to become a hop along again, he stumbled up one of the steps and he is holding his left leg this time.  I wonder if all extra large dogs do these things.  Although he is wanting to bite my hands like they are going out of fashion.  I say 'No' and he wags his tail.

Am still waiting for the scan date, my GP rang last Friday out of the blue to see how I am and when my next scan is due.  He was a little shocked that it is some 5 months since my last one and thought I was getting one every 3 months.  Hopefully he will also chase this up.

Back to doing some paperwork, hope you are all well.
Jan

Friday 3 December 2010

Heart Explained

I emailed my docs for an appointment to see Dr Murphy to discuss my heart.  I met Dr Murphy when I had heart failure back in 2009 after Mesothelioma Action Day.  These pains in my heart area are worrying and although it is great being alive it does get you down when you get up everyday in pain and feeling yak and no one really understands.  Plus it doesn't help that you feel guilty moaning when after all you are still here against all odds.

Last night we all ventured out for the meeting, I tried to explain the pains that I have been having, I must admit I do find it difficult to convey pain into words, my china man was my best at explaining but these pains aren't like that.  He duly listened and wrote notes here and there.  He did explain that what I explained didn't really match an ulcer either and it certainly didn't match that of angina or a fatal heart attack on the way.

He had pulled up my previous records and was able to explain that after surgery the heart had moved and twisted slightly, which makes the ecg look odd.  He also explained that my heart has to work harder to get the oxygen round the left lung because there was a lack of blood vessels but the same ground to cover.  My breathlessness can be caused by this because I'm not collecting enough oxygen in my lungs so by pushing myself in some cases I'm not doing myself any favours.  My resting beat is probably the same as a healthy person's walking beat.

I was telling my eldest brother this on the phone last night and he said Maybe you need to exercise more!  I have decided to just give up trying to explain anything to him, as the more I overdo it the more I push the heart the larger the muscle will become which could mean my muscle losing some of its elasticity. 

I asked if he thought I expected too much from myself and in a nutshell he said yes.  My anatomy is nothing like it was and surgery doesn't always put things right, which in our case it doesn't. Parts of us are removed so as we can keep on going.

I have been listening to my body these last few days, I have stayed in doors where it's warm, but I feel like a wimp - do others that have been through this feel the same.  Dr Murphy said I was remarkable still carrying on as if nothing was wrong, going to work and taking dogs for walks etc.  I took this as it was meant, a compliment.  Yet in everyday life it doesn't really help because we are born independent and you don't expect others to do things for you.  Looking out the snow is so tempting but there is no way I can run around the garden chasing the dogs, I just wouldn't get my breath and then when that happens it feels like your whole chest locks.  As for what is causing the pain no answer, it could be scar tissue, it could be from the chemo still or even worse it could be my old friend.

One thing I do know is that I am getting worse but could this be explained by the cold weather. 

If you have had surgery to remove your cancer please let me know if you are suffering fro a heaviness in your chest and the feeling of an iron ball sitting there.

I also hope that I do get an appointment for my CT Scan in January and maybe I might get a gastroscope done to see what is going on down this channel. Just to wake up normal (ok not quite normal because my left side will never let that happen) but to just have leftside pain would be wonderful, jumping out of bed on a morning feeling great is my aim in life.

I hope Debbie had her operation today so she can get sorted and started on radiotherapy.  Timing of treatments is so important for everyone with meso.  Do you sometimes feel written off for normal problems because you have mesothelioma?

On that note I think I will sign off.