Mesothelioma - a way of life

Funny how mesothelioma really does take over your life, without you even noticing that you are getting on doing whatever it is we do, meso is always there.  That twinge in the ribs, that little bit of breathlessness, the aching back.

 

I noticed today that half of our married life we have had to deal with mesothelioma, hubby picking up the pieces everytime I have had some sort of treatment, be it major surgery or a blast of radiotherapy.  What memories will he have when I die?  Those first years of marriage I had endo, and we learnt to live around the 2 weekly pain sessions, thinking we had finally got our lives to ourselves meso enters our life.  There has always been a third unwanted guest in our marriage.  Our time together has always been blighted with some form of him watching me and feeling helpless.

 

I am happy that he has taken up his hobby with the camera and getting out of the house, sometimes I did get annoyed when the house was left and he had sat watching tv all day but I realised the other month that I may be in pain but so too is he.  Mental pain and anxious is much harder to deal with and to get over.  Unfortunately, this anxiousness will never go, as we look towards the forth coming weeks how will we deal with it, treatments affects us both so differently, so getting him out as much as possible for the moment is important.

 

 

My family aren't really much of a support mechanism where emotions are concerned, both have the business to run, one with MS and all the problems it brings and the other heading for a major heart attack.  I have also realised that during previous treatments I would force myself to work because they were my brothers and work was busy,  but this time round I will rest more and worry less about what is happening.  Although I do treat work as a place to forget my meso, once absorbed in whatever I need to do my meso is forgotten, only little Ann or Claire ask and occasionally if I'm off colour Mal will say I look terrible, apart from that it is my escape.  Yet hubby doesn't have that escape, but when he is out with the camera and sitting waiting for the right photo his mind is anywhere but on meso and for that I am grateful.

 

 

Families need to get away from this cancer too, they may look strong around us but inside they too are crumbling, we don't see that as we are trying to be strong around them.  I do believe it is harder for the spouse than for the children, but still it is hard for all.

 

When I sit in the office at home he is always there with me, sometimes he annoys me with the tv but I too would prefer him with me than being somewhere else in the house.  Every minute together is precious and as time goes on I have realised that he is right, making special days will make it harder when the time comes to say our good byes. 

 

Out of no where today I was thinking about the end, probably after reading about David being poisoned by his treatment and his time on this earth is nearly at an end.  I was wondering whether chemo will be allowed if my platelets are low, as before it nearly killed me before the meso could.  I thought about how I could say goodbye and leave a letter without him being there.  I don't want him watching me struggle for breath like we saw my mam, I would rather end it myself and save him those awful last days but then could I have the strength mentally to do this?  It is strange the thoughts we have.

 

As I said at the beginning Meso never really leaves our thoughts, and this week Cancer seems to be mentioned on everything we watch or read.  I would love to go on holiday again just to get away from meso but it still follows, that third unwanted guest.

 

So many are back on treatments at the moment it makes me wonder how some of us have managed to survive so long and others seem to succumb to meso in a short time.  I only hope my goodbyes can wait for another few good years.

 

I will warn you now that once I start chemo, if I do the blog I will be truthful to how I feel, I can only hope this time it isn't like the previous times, but if it is the same beware you may think this is how it will be for you, you have to remember each treatment affects each person differently, our bodies are unique to us as is how our bodies deal with medication.

 

Guess I will have to wait till Monday to find out whether I am allowed to fill my body with poison, not sure my body thinks this is the way to go but my mind is telling me it is.

 

To all affected by mesothelioma I hope you're not having these thoughts.

 

Sunshine Lovely Sunshine

Hubby decided to surprise me and have the carpets cleaned to make the house smell sweeter and remove most of Bear's drool.  Lets face it he makes plenty!

The sun came out around lunchtime but of all the days I was working all day.  I managed to work late as well, so I was a little upset that for the first time in weeks and I mean weeks the North East of England was having a proper summers day.

Nevertheless, the dogs knew that I was thinking of a wonderful walk over the fields, as when I came in the dogs were both jumping up and down, Bear dragging my hand pulling me to the utility room to get my walking boots on.  Honest you can't keep anything from the dogs!

Poor Bear didn't manage to catch any pheasants but certainly enjoyed himself, wish I could say that Lexi was getting some hearing back but still shows to be as deaf as a post. 

Healing tomorrow, I can't believe how fast the week has gone by but I must admit I am looking forward to having healing.  Really need some of the heat on a couple of my pains.  At least on Monday my heart seemed to settle back down, through another one of those new style sessions.

My doctors are requesting my scan for end of the month, I know its a scan and I know it might say things have grown.  Maybe and hopefully it will be pretty much the same as the last one but it is hard to size the tumours and thickening.  As usual we never lie in the exact same position nor does the machine start from the same starting point.  What could be measured as 11mm last time could show just a small growth depending where the cut of the shot is or a lot.  We say to ourselves I know it isn't going to be stable and it could only be a small growth but even a small growth sets your mind into a whirl, no matter how strong we are.  Just hope my news isn't as bad as Chris had this week.

My heart and thoughts go out to him and Cath this week.  Even if you don't believe please send a healing thought to him.

Fingers crossed the sun still shines.  Stay safe and well all.

Life and the internet

I have been lost without our internet, honest you would have thought my hands had been chopped off.  The Router decided to crash, one minute on the next off until finally it died.  Because of the complex set up I have at home with networks for work and home I couldn't just pop along to whoever and buy one, Monday seemed a long time away from Saturday I can tell you.

I have taken the step and tried to join Face Book.  Well I think I have, but I just can't understand how you find friends.  I don't like the idea of entering my email address in the box and it finds people I know, I think maybe a little dangerous as I could be giving out names that are then sold off for data services... or am I over cautious!

Wasn't the Queen a good sport for doing the opening at the Olympic's.

The loss of our internet hit hubby hard, not having sky (the tree's stop us getting good signals) so he was hoping to watch the coverage stream through the computer.  He wasn't a happy bunny.

I am making plans early this year for the Carers Day held in October, having persuaded hubby to come with one of our friends (who is helping me get my book up and running) and her husband. The men are off to the science museum and while we attend the meeting.  I wish I could get him into one but I have as much hope of that as Bear having pups - none.

At least I haven't done anything stupid for a week, no walking steep hills or climbing flights of stairs more than one storey.  All in all I guess things are ok, what can we say when each day brings something different. 

Sometimes I hear such sad stories about meso that I wish I had never heard of this cancer, let alone have it.  A friend in Oz has a partner who is having to be tube fed because of the meso, having to stay in hospital has contracted pneumonia.  Why is it when someone with meso goes in hospital they nearly always end up with this and I hate to say it but succumb to it?

Another friend of mine has let me know that things aren't going as well on the SS1P, she has a friend on it who hasn't done well and knows of a few others.  Why can't we just find the key to turn it off.  The thought of something hard and brittle developing inside my chest isn't a wonderful thought.

I emailed a friendly doctor of mine last week after my near killing myself expedition, he assured me my heart would be fine but meso has a nasty habit of growing on the structures which makes the pain that much more unbearable. 

I am sure keeping myself so busy with too many projects is keeping me going, I know that if I ever found the time to sit on my backside and have nothing to do despair would surely start creeping into my brain. 

I can see a little blue among the grey out there, typical need to go into the office today.  Hope where you are the sun is shining and meso is a black cloud far away over another planet!

Dealing with Mesothelioma

We all handle the diagnosis and getting on with it so differently, some of us hide, some of us face it like an on coming train, others cry, some have anger issues but it all leads to one path and that is acceptance.  We have to accept that we have been unlucky in the cards that we were dealt. 

At the age where my life should have been everything I wanted, money in the bank, good husband, nice house, career I got the biggest bombshell of my life.  44 and six months to live, thankfully I am still here and things have moved on.  But have they really, is the medical profession any further forward in dotting out the line that says what our meso is going to do next?

I would love to say that Alimta keeps the meso at bay for many years but I can't because we know that it only works on 40% of tumours, what of the 60% if doesn't work on (I think that now includes me) what do we have to help us starve the meso of what it wants.

I do hope that something comes along soon and that it works, I hear that the SS1P is doing well in the States, The Adams here is apparently helping, cryo would be wonderful on a few of my tumours that are causing pain - not going to happen is it!  We don't hear much about the other drugs that have been trialled and left on the wayside.

Do we know when we are ready to give in, some days with the pain I could quite happily say enough but I know I don't want to die, I just don't want pain.

My meso is depressing me as much as the weather, this path of life can be hard but we have to keep moving forward and always hoping tomorrow will bring something good.  Out there is an answer to what makes Mesothelioma tick, a researcher will find it I only hope its in my life time and yours.

Today

We spent the Jubilee pretty much in the fields, hubby convinced me to take my camera and I spent hours trying to capture those long tailed tits or Black Caps.  The dogs loved it because instead of tramping round the fields we kept stopping and lying in the grass waiting patiently for birds to fly onto nearby trees.  Overall it wasn't as tiring as a normal walk but I was tired from all the fresh air we had. Bear especially loved it as he kept trying to knock me over and pull my arm, I am sure he was a rescue dog in his previous life!

I know most of you will have attended street parties and for those who live in London had the wonderful day by the Thames and of course the concert. 

I was sad to read that Ray has spent a day being over tired, this miserable cancer can sometimes spoil the most precious of times and that is what is so annoying.  Along with the tiredness comes the pain which is wearing too and unless you experience both it is so difficult to explain to others.  I have found recently that my armchair is much more comfortable than the bed but then I only nod off occasionally in the chair and haven't slept all night in it.  I have started using a small pillow for my legs because they ache so bad but even that hasn't really helped and the thought sometimes of retiring to bed isn't a happy thought at all.

Yesterday as I was trying to get close to a young deer hubby took the dogs the other way so as not to disturb the thing, he was probably out of my sight for 15 minutes and as I made my way back to him and the dogs I saw him running towards the fence.  My heart was in  my mouth thinking that Bear had gone through to where the cattle are.  The grass is so long I couldn't see the dogs, then in a flash of an eye hubby went flying, arms flaying as he tripped and disappeared down a hole.  I tried to run but found the going extremely hard, running in long grass when you're fit is one thing, running with one lung working is quite another.  As I approached he was picking himself up and checking his prized camera and lens, I finally reached him breathless to find out that he had spotted the buzzard and was running to get a better view!  Next time watch where you're walking was on the tip of my tongue. 

I wish I had stood still and rolled the film so to speak because flicking through my memory of it, it was a scene off You've Been Framed.

That's all our news from here, just had a quick phone call to let me know an old friend of the family has died from lung cancer, he was only diagnosed 3 weeks ago.  I am pleased it was so quick as he hasn't had to suffer but at the same time shocked, although he was in his 80's. 

Back to normal tomorrow, I do hope Ray has a better day and to everyone else No Surrender

Out in the Woods

Yesterday I finally got to do what I love best, going off in the fields with dogs and hubby in tow.  It was great to be out in the fresh air, no wind and enjoy the things in life that are free.

Fresh Air and good clean fun.

The dogs really enjoyed me being with them and we had a good 90 minutes out, I took my camera and tried to get some shots of Bear running, I love it when his eye's are bouncing and his tongue hanging out.  He doesn't look like any other dog I have ever seen.

My brother drove up to meet us to inform us that my eldest had managed to chop his foot off while chain sawing some damaged trees down.  All he knew at that time was he was in surgery!  I just can't believe the luck our family has, but luckily we later learnt that he had only sown through the top part of his foot and not completely managed to severe the tendons.  At least no major damage done, just he'll probably be in the office for a week and will be hell to work with.  He hates being inside and prefers to be out and about.

I haven't seen my GP for a while so have promised myself I will make an appointment.  I know that I said I wasn't going to chase scans and live on a three monthly cycle but I still need to organise the next scan and keep upto date with what is going on. 

I feel quite privileged to still be alive after so many years, but there again we should expect to live a lot longer.  Since I was first diagnosed we are suppose to have come a long way, so as my friend Lisa keeps asking, why do they still keeping saying 3 to 9 months?  And the way time flies that doesn't give you long does it!

On such a note I hope everyone on treatment hits the goal and remission is happening, for those starting my heart goes out to you, for us slow growers, may that keep lasting, (Lyn my fingers are always crossed for you,) and lastly those in remission may you stay that way and have no nasty surprises.

Friday High's

I can't believe it but for the first time in months I overslept.  We had company arriving today but at 8.30 my stomach felt lousy and I didn't want to get up, I turned over and went back to sleep.  I only hope this doesn't happen next weekend otherwise we'll miss the plane!  Hubby got me up and after a coffee that sat heavily I started feeling somewhat human.  I know why my stomach was off, we had chips both Wednesday and Thursday night so my own fault.

Mirela and her sister came up for a quick visit, we weren't sure who she was visiting as the majority of the time Alex and Mirela were with Bear on the floor.  He posed all day for photo's and certainly enjoyed all the fuss, leaving Lexi a little jealous.

It has been some 2 years since we have seen Mirela and to see her in the UK was wonderful.  It will be a long time before she visits again so I hope she enjoyed seeing the North East for a few hours.

My lump isn't improving, the fire flame pains have returned for sure.  I remember meeting a guy at a carers day who had had mistletoe injected directly into his meso lumps and they disappeared - if anyone out there knows how this is done by whom please let me know.  I haven't been a full on advocate of mistletoe but in this case I think it is worth a shot.

I have also emailed Dr Gilliams to get some further information on the thermal ablation, I can feel 2 little peas in my back on the right side when I lie down, and a couple in my left.  I am still wondering what happens to this lump - now the radiotherapy has been over 1 week will it shrink and go down or stay the same size as it is now?  Usually my radiotherapy has only been on drain sites for prevention and usually hits my bones.

For the first time in weeks I am pouring myself a B & C so time for a drink and hopefully my excessive bile will give me a break for a day.

Jan

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

Jan

Ups and Downs

Like everyone, the weather knocks me back and certainly puts me off going out.  On top of the cold I have been over working and ended up wearing myself out, hence 3 Sundays spent on the sofa feeling sorry for myself.  It scares me when this happens because I feel useless and wonder what I will do when I get to the stage that this is all that life has to offer.  I couldn't even find the energy to turn the computer on, but then you find yourself getting frustrated with yourself for not doing anything.  I do wonder what I would do to keep myself active when things start going downhill, I certainly knew that if I felt like I did on those days I wouldn't have the energy to fight. 

On a brighter note, or not, Lexi came into season and poor Bear has been beside himself these last 4 days because she is ready.  What beautiful pups they would be but alas Lexi is to old and Bear to young.  He has no idea what he should be doing, his idea of romance is licking Lexi's ears constantly or having his nose attached to her rear.  He stands panting next to her and driving us all mad.  I took him into work Monday and Tuesday to give him a break.  Hubby showered Lexi down to get rid of all the salva off her back and ears and hopefully block the aroma she is giving off, but it didn't work.  As soon as he came through the door he was at her ears and licking as if his life depended on it.  She is nearly over the period of come and get me and is back snarling today when he gets within biting distance.  Just hope he starts cooling down as I don't really want to get him done.

Another landmark that happened was my nephew's 18th.  This was something I didn't really think I would reach and I was as proud as punch when we all went out to dinner.  I hope that I get to be around to see him graduate from university.  He was trying to explain a joke about quantrum physics, overcourse it was lost on me, even moreso when he kept laughing to himself when he was telling it. 

Christmas is once again round the corner, I know that many of us don't particularly warm to this time of year, we have lost someone or we have been going through treatment at this time of year, but again it is always the start of new hope in the New Year and it's one in the eye for still being alive. 

I read something the other day about funding for drugs that only buy a period of 6 weeks additional life.  Again this is based on stats and Alimita was only suppose to give an extra 4 months, how many of us had an extra 12 months minimum.  I know I said I shouldn't get into the politics of it all but my blood is boiling again.  No funds because the NHS has to make cut backs, so the top boys in management ensure its treatments that everyday people will loose and they keep these stupid placed people employed where the higher wages go and us everyday people don't have a clue of their existence.  Under the NHS is your nutritionists, Liaison Managers etc.  I remember once even reading that the Trusts employed people to visit kitchens in hospitals to tell them how to serve food ... that's the jobs that should go and use that money to keep the nurses, doctors and treatments going.  When they say they can't afford to do operations, how, the surgeons are already employed, the theatre nurses are paid .. where does the cost come into it?  If no theatre is working do they stop paying the surgeons and nurses?

I haven't been for the flu jab yet, I keep meaning to ring up and get an appointment - So remember go and get yours.  I am also starting to worry that I haven't been given a scan appointment and only hope I get one in January, that will be a 6 month one, but I have a feeling it won't happen.  I have told hubby that if I have recurrence then I will sue the hospital\chest doctor for negligence as he/they are responsible for knocking my scan back.

Hopefully I will come across alot more happier next time on line

Jan