Sunday, 30 January 2011

Gaining Energy .. Just

With the hint of spring around the corner .. well nearly, this week has flown.  Its the last week of our main Company's final year so last week was a little of a nightmare, then I have been on site with the houses everyday as well.  Although I don't call it resting on Friday I went with hubby to his sisters and had a hand in some decorating.  I know that I will suffer from stretching but it was worth doing something different and I do enjoy getting stuck in.

I did suffer, this morning, but I refused to stay home and sit on the sofa feeling sorry for myself because it just makes you feel stale anyway.  Out we went with the dogs and although it was colder today than yesterday I did enjoy our tramp around.  I managed an hour's visit with my mam but as always she makes life hard for herself.  Over the last couple of weeks her legs and feet have swollen beyond what the skin can take so they were weeping buckets as well as hurting.  She refuses to walk unless she needs to go to the loo and no matter how much I moan at her to get up and do something she just ignores.  Today was no different, I said come on lets walk around the house and get those legs moving ... 

.. mind eldest brother takes no notice either, his head isn't getting any better and I think he looks worse.  He had his staples out on Thursday and the nurse again told him he had to rest ... he needs to take a leaf out of our mothers book!

I heard from Linda in the States, seems her sister still hasn't had her radiotherapy, there goes my belief that things get followed through faster there than here.

Speaking of USA the solicitors have been in touch again, something to do with the American Government having a fund set up for people with meso which may have been contacted through the English ran companies.  Maybe something nice might just happen, not that money can buy you health but hopefully will go to helping the cause.

Our new mattress arrived on Thursday and you sink into it, I must admit my ribs didn't feel as bad as normal the last couple of nights but I daren't say too much to soon.

Nev came through his surgery on Monday, although like me his bp falls drastically and he ended up staying over.  It did affect his ms as his speech was still slightly slurred on Friday but he is such a strong person, he was in pain because he was in a grump all week.  As for the results, at least 2 weeks before we know what is growing down there.

I had my scan on Wednesday, I am a little nervous but then I haven't really got any new pains, just my old ones getting worse!  I only hope I can get my hands on the CT Scan as Dr Abtin is eager to review.

I hope Debbie's forthcoming trip goes ok to see Prof V, Cliff is doing ok and all we can hope for is static\stable results.  I don't know how they are doing it again, but I know that when the time comes we all find that inner strength and fight it all the way.

Next week will be another heavy duty for me I don't know whether I have enough steam to keep pushing myself at this pace and will probably end up on the sofa for a long week end before long.  I said to hubby today that we need to decide what hols we want to take and when, I think the dogs will have to go to kennels this time but I want to find a different one, Lexi needs a lot more comfort now that she is getting on, plus her bum is nearly back to normal, one week of not keeping on top of it can set her back again.

Wishing everyone the best and remember no surrender


Sunday, 23 January 2011

Busy Week

My health has certainly taken a dip this week, I have been overworking my body and to be honest the thought of sunshine is calling.  I visited site 3 days and it was so cold my finger ends were white.  I think I am crazy taking on projects that I really shouldn't have.  3 of the houses are ready for boarding and 2nd fix, which means I need to get my plans for bathrooms and kitchens finalised, also the kitchens need sorting for the remaining 7 houses which I haven't really bothered with since knocking down some internal walls.  I didn't realise how much effort and time the housing project would take, now I am at year end for the Company with a lot of pre audit work to do, I need to do some updating on most of the databases I wrote over the years and my energy level is at zero.

I took a couple of temezapam this week to help ease the pain, the two nights I took it I slept wonderfully and I did get some relief as I didn't wake up during the night to feel myself locked in a position.  But the day after the night I didn't take it my body seemed to hurt 100% more.  I can't decide whether it is worthwhile taking them for a night to get some decent sleep but then having a double rotten day and night the one after.

Nev goes in for surgery tomorrow and the worry of what that will reveal is a heavy on my mind, not to mention the problem he has coming round after surgery, something to do with his MS.  Then my eldest brother Stephen got himself fully knocked out on Thursday afternoon on site.  His wife and I drove through to James Cook Hospital not knowing what to expect.  Luckily for him he turned out to be okay but on the reflection side it could have been a lot more serious.

All week I have been looking forward to going over to my sister in laws and help her get organised with redecorating her house.  When it came to yesterday I woke up with that rotten meso feeling, my ribs ached, my stomach area felt that yak, my false diaphragm was digging in, my legs ached and although I didn't want to waste the day on a sofa (which I really hate doing) I felt that was where I should be, but I took no notice of sense and logic and we went to her house.  Needless to say we didn't get anything done apart from buy some sugar soap for the bedroom walls!

It has been a week since Danny left this life, how many more will follow the same fate?  Another meso friend has had another good ct report, since diagnose he has had no new growth and is stable, that is now 18 months, no treatment, nothing.  I hope it carries on that way for him for many a good year to come.

All I can do is hope that my meso hasn't returned because I really have no idea of which route I would take, but pointless worrying about that until it happens.

Well do I try and help decorate today or stay home and rest, I have another full week ahead and no days where I could just work from home. One thing I do know is that once I kick start myself into action I will get something done.

To those of you with pain I hope you get some respite too!

Sunday, 16 January 2011

Carers at Home - Helping Hands

Yesterday was the two year mark from when John Edwards kindly cut me open and removed my pleura, pericardium and diaphragm.  Two years of extra life that I wouldn't have had.  Funny, he was reliving his day for me, and I could still feel the fear he had in the way be spoke about sitting waiting for me to emerge from surgery.  I remember the morning getting needles in my back and then when I awoke at 3 am wanting to die.  It is so amazing how we can come back from the brink and keep on going.

I would like to thank Linda and Debbie for their comments about my Letter to meso and I do hope that it has helped someone along this journey.

I have been trying to get help to live in with my mam, she is fragile and 84, just before Christmas she had a fall and knocked herself out, cutting off her oxygen etc so I have been concerned about her being on her own during the night.  After lots of research I brought in a company called "Helping Hands" who promised the world.  How gullible I am, what they say and promote is nothing to what they actually deliver.  Hence, after only 5 days I have cancelled the contract, although the helper will be there for 14 days (their minimum period) and I paid up front for 28 days, and given 7 days notice of cancellation they have thrown on another £300 + worth of charges.  It's not the charges that have annoyed me as so much as what they do.  My mam called out during the helper's 2nd night 5 times, so I got a phone call the next morning from the Company telling me they would be charging more as the helper would be unable to do her job if she had a lack of sleep, how was more money going to give the helper more sleep?  The Assessor said on her visit "over the first week they found the client would interupt the carer as it was a stranger living in their home and this was quite acceptable." If it continued past a week then they may ask for additional help to be paid for.  We were told that we could bank hours, so when mam's at the centres for 8 hours 3 days a week that would cover the helper working all day the other 4 days, this was totally put down by the manager on the phone saying that if she had more time off on one day that was down to our organising and not reclaimable ..

I have even kept one of my original carers for mam on so on top of the centres, the carer was also off duty Monday and Friday morning, I get a phone call on Thursday from the helper saying she can't get mam up for the centre and she needed to go to the town etc to do her own things, bearing in mind she had been away from the house all day Tuesday and Wednesday.  So I had to call my other carer to come in and work Thursday as well!

If you ever call in an agency record what the assessor say's will happen when they come and visit the house and ask the 1 million questions.  Another thing we told them mam smokes, a max of 5 a day, (also covered on their list of questions) so they sent a non smoker who detests cig smoke and then accused us of not telling them she smoked.  This is because they are short of carers and didn't want to swap or lose the business, so the blame lies with us.  We were told all experienced with the elderly, that isn't the case either. 

So I have now done research pretending to be a carer looking for work and believe me I was surprised at some of the sites.  To make the most of a paid holiday and to have the best time (that's how its worded on one site) apply to be a carer for short term, ensure you get clients that enjoy visiting the theatres, cinema's or insist it would be good for them, as you are paid for and get to visit sites free.  You only have to attend a 3 day free course on caring and your employed.  Not what the brochures say to us punters.

Sorry I am so annoyed as I thought after meeting the representative from Helping Hands my problems and worries would cease, this last week has been more problematic than the 5 years I have had carers in for my mam!

Also I think if you are terminally ill and need external help it is wise to know about these things going on.  I didn't realise what such a big industry it is and how much money is to be made by the agency's etc.  Our care home workers get minimum wage while working in homes and I would think these agency's staff get the same yet the company's are charging a fortune, I know everyone has to make a living but then the staff who have been on the books then want the same kind of money the agency's charge to work privately.  What an easy way to live, especially if it is with someone like my mam, aid in getting her washed and dressed, feed her once a day with something warm then sit her in a chair and leave her to watch tv, help her undress again for bed and by 8pm she's in bed.  All your food is paid for, no house bills, everything you earn is pocket money.  I know it takes a certain kind of person to want to live with an elderly person but if you are doing 6 weeks on two weeks off and changing each assignement you are laughing all the way to the bank.

Okay signing off, have emptied my mind of ranting, going to enjoy being alive.

Just had a phone call to say my meso mate Danny has died .. my thoughts are with his family.


Saturday, 8 January 2011

A letter to meso

Dear Friend
How long have I known you intimately for now, 6 years coming up 7.  We have certainly seen some battles you and I.  You have taken me to near distinction and others have brought me back again.  Our lives have affected others as well as each others and all the time its a battle of nerves, who can outwit the other. 

Over these years, more recently the last 4 I have come into contact with some wonderful people because of you, and I have also lost some wonderful people to you.  You have brought destruction and despair, pain and unhappiness into so many lives and yet you are still here, still residing where you aren't wanted.

The effect you have on life is so hard for others to comprehend, you are hidden away with no outwardly signs, you slyly and slowly sneak into one's life and by the time you are noticed you have already caused unwanted problems.   I,  for one, have been fighting with you for 10 full years, albeit I could only put a name to you after 4 of those years.  The pain you unleashed in the early days was bad but at least you gave me breaks, over the last 6 years you have been unrelenting with unleashing pain, you find ways of making my body hurt, even in sleep you still hold your power of pain over me.

Some of those you have touched have been spared with pain but suffer in so other many terrible ways.  You leave no one untouched when you become part of some one's life. 

You inspire some wonderful doctors who want to discover your secrets and rid us of your presence and then there are some who ignore your very existence or find that dealing with you to troublesome and prefer not to deal with those you have come into contact with.  Oh yes I have met both sides and so have many others, but you don't understand the determination of the human race and we will beat you, one day you will no longer exist.

In dealing with you I probably have helped cause a lot of the residue pain, removing you from the very core of my body was my last option and have spent 2 years of additional pain, I wonder if this is your retaliation for removing you?  Maybe had I had you removed in our early days of meeting the pain may not be here now but no one knows the future, all I know is because of you my flesh has suffered .. but you will never own my soul.

I hope that this New Year will bring compassion into your being as just the mention of your name brings fear to all those that hear it.  Today more people understand the name you are know by Mesothelioma, more are aware of your hiding place and more importantly  people are trying to find your secrets of life so they can eradicate you from our lives. 

For me I guess I'll have to struggle on, but be aware you are never out of my sight and I will always try and outwit you, you have worn me down, made me old before my time, tried taking away my life and even today as I am tired and weary from our fights and from the pain I will not let you win.

I am watching you