Injection Again!

I haven't done much the last couple of days, after shopping on Tuesday I was pretty worn out on Wednesday.  Thursday seems a blur, I did a little work but not a lot.

 

Yesterday morning I woke up feeling terrible, again!!!  Am getting fed up of this I should be improving not going downhill further.  My shoulder has gone again, bone on bone so thankfully I was able to make an appointment next week with my physio although I wish it was today.  I couldn't take the pain so texted my brilliant GP and asked if he could come and give me another jab in my bum. 

 

On Thursday my DN came together with my MacMillan nurse.  We discussed the large breeze blocks that I call feet and decided maybe my heart should be checked again.  I have arranged to go back and see Prof Murphy.  The problem being I will be given Diuretics which affect your kidney and as I am on chemo I don't think this would be a good idea.  But it can explain more of the breathlessness, I would rather it be my heart than the meso growing any day of the week.

 

I have asked her if she would be interested in doing the Mesothelioma Practice in Cancer Care and I think I raised her interest.  Although she will have to go through the trust to see if she can apply for it.  I think my MacMillan would be good at caring more for meso patients, she just has a way with people.

 

Anyway Friday, feeling pretty crap as I was turned out to be a busy afternoon.  My toe lady came, and although she couldn't dig my nails out, in case she cut me, she managed to sort them out pretty well.  Then Joyce arrived and gave me a foot and lower leg massage.  I was so tired I could have drifted off, just as she was doing my shoulder, trying to ease the pain my GP arrived.

 

After telling us a little about his holiday he then gave me a nice painkilling jab in my now bigger bum.  It didn't hurt as much as the last one.  The relief came some 20 minutes later, it didn't take it all away but thankfully the pain on breathing eased.  Funny how your shoulder can make breathing hurt!  He said I did look better than before he went away, pleased I was eating crisps because they had calories etc.  I did tell him that this chemo was a walk in the park compared to Alimta.  I also apologised for having to call him out, I must be one of his worst patients, because I contact him directly and bless he always looks after me.  He has promised to drop me off a spicy indian recipe for chicken, as I told him I am craving spices.

I have bloods organised to be taken on Monday so just hope my WBC has come down some and whatever is going on inside me has cleared.  I did mention this to the doctor, hope he has a look at my results and comes up with an idea.

 

He left and so did Joyce as I was getting tired, I checked my phone and noticed I had missed a message, my best friends daughter was wishing to call in.  I rang her back as my phone couldn't deliver messages to her, odd!  She was 10 minutes away from ours so I thought she's made the effort come on Jan, wake up.

It was lovely to see her, its been quite a while since she was last up.  She stayed for an hour then was going to go to the gym, where do these young ones get the energy from.  I felt so tired that my eyes were going to close but Gary had dinner on so saying Goodbye to Tash then into the kitchen to see if he needed me, no!  Good so I went back into the lounge.

The pain in my shoulder was steady but my chest and right back started to increase in pain so I took some morphine.  This made my eye's worse but once I had climbed the stairs to bed and couldn't catch my breath I was wide awake again.  Why does that happen.  My chest felt like it had been shrunken again to only a couple of inches and no oxygen was getting in.  Somehow I managed to nod off and didn't get up till 8.45 this morning.  A lie in yeah!

I listened to the replay of Jeremy Vine's show this morning regarding the school teacher and mesothelioma.  I thought it didn't cover very much and was highly disappointed.  Usually he gets a good debate going but I thought this was flat without enough information regarding the dangers of asbestos. 

If you want to hear the discussion go to approx. 1.08 on the time slide here

I have sent him an email asking him to do another debate, they need to cover more, and discuss the use of it throughout the world.  Asia is rising in its use of Asbestos, how will we track we don't get it into products in this country?

Our community has had a few more deaths this week, the worst time of the year to lose people, although any time is, but around the holidays makes it that much harder. 

 

A lady emailed me the other day, reading what she wrote brought back the memories of my own beginning with meso.  Her husband hasn't been diagnosed with this but his symptoms are the same as mine were.  She was told that meso doesn't affect people in their 40's, what is wrong with our doctors, in fact one had never even heard of the disease.  This is frightening in this day and age, how many more are out there undiagnosed when if caught early they could have a good chance at a long term remission?

 

If you have any concerns regarding mesothelioma and need more info please contact Mesothelioma UK, they can help guide you to the right people.

 

On that note I am closing the blog, my body is soaked in sweat, not sure whether its the meso or the chemo causing this today. 

 

Have a good weekend and enjoy the last day of November.

Getting Organised

We have had a strange weekend, after having a knock out on Friday night I slept really well and woke up reasonable on Saturday morning, although poor husband didn't.  His throat was sore and full of spots.  We checked the emergency supply cupboard and found some antibiotics for sore throats.  He had had one the year before and had used one and a half courses to get over it, so having enough for the weekend he started.  This isn't what you should do but under the circumstances we both agreed, better to take the tablets than not.

 

I didn't do a lot on Saturday, in fact I was pretty much sat on the sofa all day and Gary in the chair next to me.  Both of us out of sorts for different reasons.  Even the Bear didn't get a walk, which in itself says how poorly Gary felt.

 

Sunday was a total different day, although for Gary not, for me I asked him to bring all the Christmas presents down stairs and put them in the dining room.  Here I can pop in and out when I have energy and do a few.  Well in all my years I have never started wrapping this time of year, in fact I've never really had any shopping done either!

 

Yesterday I spent 4 hours wrapping his presents.  I know I am slower but wow I hadn't realised how many things I have ordered for him.  No wonder the poor guy is worrying about Christmas, I have given him 2 ideas and one of those was a new electric toothbrush.

 

Mavis has copied down Christine Winter's speech given at the DAST conference and rather than me copy and paste I would ask you go and read it here

 

She has also added the information regarding the bill for doctors to be allowed to use experimental drugs on cancer patients.  We are all for this who have cancer, but the few that spoil it are those who want to claim and sue hospitals.  Anything for a free meal in some people's eyes but what they don't see is the bigger picture where people who are terminal are refused these drugs because of the claim culture we have adopted.

 

You can read that article here

 

I have gone off Sunday Roast, well not off completely but I am a lover of Gravy and recently I can't taste it or in fact the meat or veg.  So yesterday I voted no for dinner.  Last night was a simple choice for me I wanted something spicy to taste but I am not really a take out girl either.  We did try a Chinese on Friday night but it made me feel a little queasy.  I asked if we could go to KFC and have their chicken.  So after a quick debate, is it too cold for me to step outside etc, we got into the car and off we went.  We ate it in the car but to be honest I couldn't taste anything.  I enjoyed the chicken burger I had but the skin didn't make my tongue tingle at all.  My thrush is still there too so whether this and the chemo is to blame I have no idea.

I asked a dear friend to enquire from her doctor daughter the reason red blood cells could be so high and this is what she came back with.  Maybe a good explanation as she is also just learning about mesothelioma but I feel it answers my question very well.

The raised red cell count could be because of the meso's destruction of the lung. The lung might not be able to absorb as much oxygen as before. So to compensate, the body makes more red cells to carry the available oxygen more efficiently. Very much like athletes who train in high altitudes where there is less oxygen in the air so their bodies make more EPO (erythropoietin) to make more red cells and increase their oxygen efficiency, improving their performance.

It was so kind of her to take the time out and ask and for her daughter to answer.

So today is Monday, District Nurse for me, Doctors for Gary.  My friends are thinking of taking me shopping tomorrow, just one shop.  They will drop me at the door then park and then we can have a wander round one shop only.  I am hoping I wake up tomorrow feeling good as it will be great to go somewhere other than hospital or my first trip out to KFC!

Lexi has picked up, in fact you would never think a week ago we thought we would be losing her, whatever happened she has pulled through, much to the relief of Gary and I.  There was no holding her back for a walk either so all's well that ends well.

For my fellow meso warriors I hope this cancer isn't driving you downhill, I know its easy saying try and stay positive, heavens I have been on my knees over the last few months, but we can get through it.  Always think tomorrow will be better than today.......

Wednesday - What to do?

Boy oh boy has the last couple of days flown in our household.  Monday Gary drove down to see his mam before her forthcoming operation today.  So we are on tender hooks now, we have no idea what time her surgery is and whether they will manage to remove all that nasty cancer sitting inside her.  The good thing is she is a very fit lady, a golfer who never misses her games and some one that likes to walk for miles.  Apart from having this condition she isn't at all under the weather, even the chemotherapy didn't put her off her game over the last 10 weeks.  I am sure you will all be sending a healing vibe out to her on my behalf.

 

On a thought that Mavis reminded me, asbestos has been linked to ovarian cancer.  Just shortly after Gary was born his mother had a problem with one ovary and had it removed, I just wonder if it has something to do with asbestos, after all his dad made snowballs with the stuff in the factory he worked in at Hull.  I did mention this to Gary but he doesn't want to go there, I can understand this but still it should be pursued, maybe I will try later when her treatment is complete.  Not everyone wants to think about asbestos or what it can do.  Plus Gary has been through the mill with me over these last 13 or more years.

 

Monday did fly, Liz arrived and we nattered for quite a while, in fact we didn't do any work together but admired the wonderful work of the back cover Lauren finally sent.  It is the book in one drawing!  My District Nurse arrived, the only man of the team.  He saw such a difference in me since, I haven't seen him for some 3 weeks or more.  That is always pleasing when someone notices how well you have recovered from when you thought you were on your way out, and didn't I!  I found out that when he was a young boy of 11 he fought non hodgkin's lymphoma stage 4, he was going to write a small booklet for Macmillan about it for other children but never completed it.   A little encouragement and maybe it will get done, I hope so.  After all, he is a fit young husband with a child, something that seemed an impossible dream when he was young.  He had also been away because his son had Chicken Pox and poor guy is a carrier.  That is one thing I don't want back, after chemo in 04/05 I was struck down by Chicken Pox, it was awful.  I contracted in I think in 06 and I have never felt, ok I have but at the time, so awful!  I certainly would not want it back again.  I even got the tablets the second day but to no avail.

 

I did settle down to work, although I now truly hate Microsoft.  I have worked mainly on the office computer so I copied my manuscript down to a temp drive and worked on the laptop, different word, I didn't worry because I kept the word format as 2003, but no, it changed the whole document!  I found my typing errors to where I have got to again and have reloaded back onto the main computer.  Now I have to reformat the whole book again.  Annoying, because of speech marks and indents etc!  Why do I do these things.  Maybe I should start watching YouTube to see what thee stupid styling theme's really do mean!

 

Gary was home before I seemed to have turned around, although I was pleased he hadn't driven up the A1M in the dark, I hate that stretch of road with a passion.  When I drove it a lot by the time I reached Scotch Corner my eyes would think 'Yes nearly home I'll be able to shut them soon!' funny how a stretch of road can suddenly make you tired.

 

My chemo is finally scheduled for tomorrow, but my cold seems to have come back this morning.  The steroids are making me eat constantly but am afraid of the junk I am constantly putting into my mouth, it's crisps - as I'm craving salt, then some M&M's for the peanut and chocolate together, then some liquorice.  Then dinner, 5 Yorkshire puddings again last night laced in salt!  What is wrong with me.  My stomach is hurting because it hasn't had so much inside all at once and I had a few kidney twinges last night, probably from all the salt!  I have told Gary to remove all crisps away from me, but this morning my hand as already been inside a bag of Doritos for the salty taste!

 

I am worried about tomorrow I can not lie, just because its a tablet my mind is treating the whole thing differently.  If I was having it infused tomorrow already my hands would be shaking thinking about the needle going in, as it is my mind is thinking its a little tablet and probably won't do much.  I know from the community a couple of warriors are on this treatment and seem to be fairing well, no not eating or stomach erupting so hopefully this will kill back the meso and still give me a quality of life through the treatment.

 

I did do some office work again yesterday, I felt the adrenalin start to beat in my heart again when I was working, so maybe the knackers yard is a long way away, or is it a lull before the storm. I did a couple of hours but I did get tired.  Sunday and Monday I felt like a new person, full of life and energy, why do those days come and go so fast?

 

I am hoping the wind stays down today as Christine has offered to take me to healing, it would be nice to go just before Chemo, not only to have some healing but also to catch up with my friends there.  It's been months since I last attended and although they are thinking of me it is never the same as a proper natter is it.  So if you have the wind please keep it your way at least until 2.30 so I can go!

 

Lou Williams is an Australian warrior, and please I hope you will read this which was published yesterday on line.  I have known her for a couple of years now and found out more about her work in this one article than in all the time I have known her.  It puts me to shame that my voice hasn't been used to the best of its ability.  Yes I have been to parliament and dropped off a petition, I have spoken at some conferences and action days but to push this when not in good health like she has amazed and humbled me.

 

Read here 

 

So today is my last day of free chemo days, Gary has already set about leaving hand sprays everywhere, quarantine starts tomorrow when we get back.  I just hope we both finally get over this cold, we seem to be passing it back and forth! 

 

This will be no 4 Christmas periods I have endured chemo, ok last year it stopped end of November but I still had a few side effects, my body has never forgotten what the original chemo did to my insides, I hope this year I do get more into the Christmas spirit!  God knows Gary tries his best to ensure we always have a good Christmas.  My first Christmas in 2004 we went to my brothers, I was itchy from head down, my body hurt, my stomach was painful and I just wanted to be home.  I couldn't because my brother wanted to ensure if it was my last one we were together as a family.  It was hard trying to be well when all you want to do is lie down.  Then a couple of days later we had planned to cook a meal for his parents, my parents and an Aunt and Uncle.  Needless to say I didn't see that day, I put the Turkey in the night before, got up and put the pork in then that was me.  He woke me to say dinner was ready, yes he had managed a full Christmas Dinner on his own, even 8 veg were cooked together with the meats, sausage meat, bread dressing, bacon wrapped sausages, roast parsnips and potatoes.  I felt so proud of him but so guilty that he had had to do it.  I ate such a small amount, my Aunt and Uncle didn't come, in fact I'm not sure whether my parents arrived either?  My memory is terrible.

 

I just hope this year isn't my last and we do make it a Christmas full of memories again. That's the problem with chemo, when is the best time of the year to have it, none really.  In the summer the summer is wasted because you are too ill to want to be outside and enjoy the beautiful (ok English rain) summer, Autumn it's getting wet, winter its down right miserable and Spring, maybe Spring is good because we are coming back to life.  But still, chemo takes it out of you, or most of us anyway.

 

Enough of me griping on, lets cherish today and still plan for tomorrow - life may not be everything we wanted at this moment in time but to have love, friendship and a sense of being is more important than just taking every day for granted.  Maybe I should remind myself that on a daily basis!

 

Lastly my thoughts go out to all those people in the Philippines, we can never imagine such a tragedy here or understand what it is like.  We were worried about a couple of our friends families and were so happy to hear they were fine.  Mother Nature is taking a beating and unfortunately the low lying lands get the brunt of her power.  Thank God for all those who work and give up time to rescue, although looking at this wonderful nation of people, they work together, something I fear that would never happen if that happened here.  In the UK we have become every man for himself, what happened to helping someone else first? 

 

 

A Good Day

Wow what a difference a decent night's sleep can do for you.  After the ups and downs since July with this wonderful abdomen of mine then this cold and now chest infection last night was a night to cherish.  I didn't hold up much hope for having a cough free night, but 30 minutes before bed I took a blast of oxygen and coughed up what was sitting between my stomach and throat. 

 

I did wake up during the night to pee and of course had a quick cough, nothing bad, I also sweated quite a bit, but pulling the sheet further across I found a clean dry spot and fell soundly back to sleep.  Even Gary had a good night, so this morning up and refreshed.  The first of many more to come. 

 

Sleep is so important, I don't nap during the day, wish I could, when my eyes start getting tired either the phone will ring or the dog will push his big snout in my face so my eyes don't often get that chance anymore.  I know Bear is doing it because he is worried in case I'm not asleep and just wants to ensure I'm ok, after all that's what our pets do, look after us.

 

Yesterday I had a wonderful day.  My extended family, Liz and Les popped over for an hour, it is always nice seeing them.  I love Liz, and although she has worked none stop on helping me with the book told me off for not panicking about doing any work on it.  My health, she kept telling me, is more important than checking spelling mistakes.  I do want it ready but I guess my deadline has passed, sorry guys who are waiting for it, it will be done, promise.

 

Not long after they left, Joyce, who in 05 became my aroma therapist and since a good friend, arrived.  Intentionally for a natter she brought her magic box of oils and started with a gentle foot massage.  Boy did my feet soak up the oil, then a lower leg.  For some reason I ended up having a shoulder and high back rub which got lower.  Soon my body was glowing with the warmth of the oils and some much needed nutrition in the skin.  When you are helped to shower etc, creaming goes out of the window.  Gary's aim is in the shower, get washed, dried as fast as possible and clothes on.  Because he is also choosing my wardrobe everyday I have no say in anything.  Today I am in bright pink track suit and blue tee shirt.

 

One thing I have noticed since my demise is I am not as cold as normal.  I would want the heating on around 20 this time of year and heavier tops etc.  I am finding I need the living room window open a little and the heating sitting at 18.  Great for the gas oil bills, because boy is that expensive to run.  I know gas is dear but try filling up a tank of 2000 litres and paying of it 3 to 4 times a year!  We may have beautiful quiet fields around but no mains gas, no sewerage and if bad weather no power, no tv and in the pitch black. 

 

At the moment the warriors have had some bad hits, my fellow bloggers have felt it too.  Steve in Oz has been reprieved with another hope of chemo.  Tess has come out of surgery having an disused drain removed from her lung, this is excellent news as she had a general, means her lungs are really in good shape.  Steve is due another scan but is feeling well and certainly doing a lot.  Mavis and I are in no man's land and Ray is having a terrible time again on Chemotherapy.  I do feel for Ray as it was bad for him the first time, and boy can I relate to that.  He has no energy and again food is his no one enemy.  I feel for Amanda, she only shares her worries on her blog and not many know she writes it.  I remember when I first started out with mine and only a handful would read it, now quite a few people I actually know do.  Not sure whether this is good or bad as they know how I feel and also I need to be careful about names that I write.  Before it didn't matter but now I will need to be careful, I could drop someone in it!  Thankfully I'm not a gossip though, only on things that affect me personally.

 

My dear friend Lisa in USA is having a hard time, losing the one man you love is so difficult and I know that many have lost their partners recently but Lisa contacted me straight after Tom was diagnosed and we formed one of those bonds that hopefully will remain until I type my last letter.  She has researched morning and night, often finding information that would suit and benefit me more than Tom.  She was his driving force in fighting the meso because at first he just wanted to roll over and let it take him, knowing what was to come as he was a cancer nurse.  I think for anyone in that profession and having to face cancer yourself must be worse than facing it for the first time without any knowledge.  They know the ins and outs.  They know the speech and how doctors work.  Lisa navigated him through his course and in the end it was an infection rather than the meso that caught him out. 

 

I read out to Gary about the post mortem required when we die.  I had told him a long time ago but he didn't want anything to do with mesothelioma then.  Now he is wanting to know everything to do with it.  I don't want to be cut open nor do I want him having to sit through an inquest either, too painful for the family.  So I think he will be starting to gather information ready for the day, still hoping its many years from now but get prepared.  It wasn't that long ago since I went through all my near death wishes.  I still want to have a double service, a Cof E and a spiritualist one.  I doubt he could hold out, but the spiritualist service is so light and full of life and love.  When I first thought about my funeral, and you will laugh, I though what if God doesn't recognise spiritualism, but then lets face it CofE was only created due to Henry.  Who's to say he recognises any manmade called religion, even RC, he is a faith in himself not a given name.  Anyway a bit too deep for this blog today.

 

Ok enough for today, needless to say I am feeling up, who knows might just get in that kitchen this afternoon and have a good go at some of the recipes off the Great British Bake Off, I loved those little chocolate nuns, that's what I would like to make today!  Gary would prefer some breadbuns, we'll have to see.

 

 

Bloody Cold

When you have mesothelioma the worst thing you can have is cold or flu.  This can lead to so many other complications but the main one - breathing.

 

I started antibiotics the first morning I started and although day 3 and still feeling poorly I would hate to think I hadn't started a course.  From coughing my ribs hurt, I have a constant pain in my left lung, I can't cough up all the mucus in my chest which leads me to do a kind of chicken flapping wing dance standing still.

 

The regime also includes day nurse and night nurse capsules, anything to keep the cold at bay.  I have a rotten headache as well as sore throat and my tongue is even on fire.  Gosh I can't remember colds being like this, in fact I used to probably get one a year if that, and then would never be off work with it.  I guess the rampage of meso has taken its toll and now the smallest germ can set me back. 

 

I met a new consultant yesterday, she is a palliative care doctor who works with the MacMillan team 2 days a week.  What a lovely lady she was too.  She is going to try and sort my bile\stomach problem first then work up to other bits that are making my life miserable.  It would be great to get rid of the bile problem or at least help make it not feel so rotten.  Will still be using many of the tablets I have tried in the past but in different orders.  Fingers crossed this works, if I could just wake up better then the day would start earlier and I would have more enjoyment.  One of the things she did tell me, which I thought was sweet, if she had read the full report on my status before meeting me she would have expected to find me bedridden, instead she met someone sitting on a sofa with a clear mind and a good understanding of my own body.  She also thought the pain I have after passing water could be something to do with the meso in the membrane around the bladder.  I hope not.  I think I need a biology lesson again to work out where the bladder actually is.  After all this pain didn't start to recently, unless its the drain pressing on a nerve or the bladder.

 

My scan is booked for Monday at the RVI so hopefully that will show more information on what is happening around the body.  Although I can only hope we get a good explanation.  Not all doctors like to tell you everything that is happening.

 

The sad news about Mavis' 4th line chemo has rocked the meso society.  After having good results with the first 3 doses the meso decided it would fight back and has managed to carry on growing through the final 3.  This isn't the news any of us want to hear.  I remember reading how well Steve had done on a trial drug and managed 3 years of stability, yet his drug never came out into the market  Mavis was on gemcitabine this time, which is used in Australia, and has good results.  It seems Mr Nasty won't give up for Mavis and I just can't understand why.  In the older generation meso tends to co-operate a little better.  For Mavis she has never really had any Inactive Stable time, or nothing like a couple of years. 

 

I did an interview for BLF in That's Life magazine, it is due out 4th November, I just hope they covered mesothelioma well and let it be known the dangers of working with or around asbestos.  The campaign is starting in earnest for Take 5 to Stay Alive.  No it isn't vitamins its about where asbestos could be and what to watch out for.

 

Finally we are changing our large Silver radiator in the kitchen, it has never worked since we had the new extension built, and as the room is virtually a glass house in the winter it is freezing cold.  Gary is thinking about turning it into a water feature for the Garden.  Yeah I think that will be a long time coming!

But hopefully today we will have a plain and simple one that does the job.  Heat is more important than looks!

Time to get moving, the day I think will be spent feeling sorry for myself but maybe I might read, try and keep my mind off mesothelioma.

 

 

 

I've Got Cold

I had a sore throat a couple of nights but thought I had managed to dodge it becoming anything else.  How wrong was I, yesterday I started sniffing and then during the night I was coughing, ears aching and itchy, throat razor sharp.  I can't believe it, I have stayed away from work, meeting people etc.  My poor District Nurse is to blame for my bugs, coming last week with a sore throat on Monday then poor thing was full of cold on Thursday.  I didn't spend any time near her, well breathing close to her, she obviously was in my space as she had to clean the drain hole.

 

I emailed the doctors to ask if I should start some Amoxicillin (handy I have some in the cupboard) and I got the go ahead.  I will also be starting steroids to help with my breathing. 

 

My Macmillan nurse came today to and we spoke in length about the problems I am having breathing when I climb the stairs.  Hard to believe in August I could do these without a problem, now I have to stop and start 3 times before reaching the top then am still breathing hard.  Oramorph apparently works well for this, so will try tonight.  We finally got an Oxygen register to work, it took several attempts for it to register, my fingers must have been cold, but while I was sitting my stats were at 95.  They were 98 in September when I had my drain fitted, we both wonder if I still have fluid in my lungs, and then this cold isn't going to help either.  Although 95 isn't bad, I have been a lot lower, I am usually around the 98 or 99.

Have taken a quick snap shot of my new fashion accessory, my patch that will be with me forever.

I am pleased I am starting to get a little flabby as the skin doesn't have to keep stretching when the fluid is present.

 

Bear was desperate for me to tickle his tummy and I couldn't resist, it was worth being breathless for, just that bonding time you have when you tickle him and his tail wags constantly.  Although I had stopped to take this picture.  He is such a darling, all the nurses love him.

 

Lexi in the meantime was sitting pining for her dad to come back, he had gone into my work to pick up some more paperwork.  I have plenty to do tomorrow, I have done a little today but not enough due to visitors.  Now as time is ticking on my energy is zapped.

The blue sky was certainly a welcome today, looking out onto the garden and seeing sun certainly lifted my mood.  The doors and windows have been open letting in lots of fresh air, only problem is the flies are still around and always manage to find their way inside!

 

I was asked a couple of weeks ago to write an article for Mesotheliomahelp on cyber friendship amongst the meso circle.  I have many friends who I have never met, many are carers but quite a few are other meso sufferers.  Lou has travelled a similar journey to me and although we only became meso mates a couple of years ago I wrote about our friendship.  You can find the article here.

 

My appointment for the CT Scan requested by Dr Hughes has been organised for Monday at the RVI.  Gary is going to love this as we will be stuck in the middle of Newcastle at Rush Hour!  Dear Lord, I'll tell him tonight after he's eaten a nice meal!

 

We have been watching Tom's Pub Grub and decided to try his short ribs.  Gary ordered the ribs last week from the butcher.  Yesterday he picked them up and we covered them in the herbs required.  Today we mixed the BBQ sauce and at the moment they are cooking ever so slowly in the oven, I have a feeling they won't be ready for tonight's dinner but the smell is divine when you walk into the kitchen.  I will let you know how they taste!

 

Time to take a rest, we have a few hours of Outback Truckers to watch, an excellent program on wagons travelling the long roads in Australia.  This is certainly giving us a view of the scenery our friends across the ocean enjoy.  Australia is still on my bucket list, I wish now I hadn't procrastinated on so many things, this being one of them as the flight there is out of the question.  A bit too far to take a boat there and back!!

 

To my fellow meso mates keep your chins up, every one says you must stay positive but this isn't always possible but we do know that having a positive outlook can influence our health.  I know I have been down in the dumps these last few months, the changes my meso has gone through and the new normal I am becoming accustomed too has been hard but for me I think I may be over that hump, just hope the cold doesn't linger.  If you are feeling down think of tomorrow being a better day, one day it will be.

 

Thanks to everyone for the support you have given me and I hope in some small way I have helped you understand the difficulties we face, the longer we survive and fight the harder the battle sometimes, but in the end living is worth it.

 

 

Thursday Morning - Hoping for a better day

Another night of terrible sweats and trying to find a clean patch between the sheets!  I woke up with terrible pain in my side around 7.30, I didn't want to get up so snuggled down on Gary's dry side till 9.30.  The night had been quite disturbed and it seemed I slept the best for this 90 minutes.

 

I came down and sat in the office, a coffee placed in front of me and a rich tea biscuit. I looked grey and felt it.   I couldn't drink the coffee, left the office and crawled onto the sofa in the lounge, pulling the knitted blanket over me.  I hurt badly even though my stomach hadn't swollen very much it was extremely painful.

 

The nurses were nearly due but I just couldn't muster the energy or will to shower, instead I had a wash then got dressed and crawled back to the comfort of the sofa.  I didn't think it worth draining my stomach as I would think only 400 to 500 ml was in there, this is good, it means the body is getting used to the cancer.  The pain wasn't easing so I took some morphine and wished I could be swallowed up.

 

It didn't seem long before they had gone and the new MacMillan Nurse arrived.  Gary said I gave her a rough five minutes to make sure she knew her stuff, I didn't think I had but there again we never watch ourselves in motion do we.  She stayed for nearly 2 hours, we went through the problems I had gone through with the NHS, not just recently but prior.  She asked why I didn't complain so I told her it only makes things worse and I found that out after I had made an observation which would benefit patients.  Her first task for me:

 

Find out who I am now under and if Dr P is acting as oncologist

 

We did talk about pain management and I said I want someone to work with me and advise not take control and tell me what I will and won't do.  Its my body and I should have a say, she agreed, so I guess it sounds like the start of a good relationship.

 

I spent all day on the sofa and all evening, my drain site is one problem and my other hip the other.  Whether I have some nerve damage or the pipe is tickling them I don't know. 

 

Another night of sweats last night but again this morning my stomach hasn't changed from yesterday, I'm still sore and still feel off. 

 

I am frightened that I wouldn't get back to how I was before the drain was inserted.  I am low on energy and this could be trauma to the body as well as fighting cancer.  But I didn't feel ill physically from the cancer even when the stomach was swollen. 

 

I seem to be going two steps forward then one step back.  Emotionally I can't accept this drain that sticks out of my tummy or the odd shape that I am.  I know I am glad to be alive and this will help me with the symptoms of this crap cancer but after everything I have been through this has knocked me the most.

 

Again I have risen late and already 10 am is looming, I need to shower before the nurses arrive, I'm still not sure why they come in two's, but I guess for the next week my life will be this routine, up, shower, nurse.  I hope I can get back to the routine prior to this and find myself back at work by 9.30 but I just can't see that happening at the moment and that does upset me too.

 

So as another day starts I see all I can do is sit on the sofa.  I wish I could pull some energy from somewhere but I just have nothing. 

 

 

Visit to GP

On Saturday night I took a muscle relaxant as my body ached.  On Sunday I didn't take my low dose of water tablets are they aren't supposed to be used with the other tablet.  I even wore a pair of jeans that were quite baggy around legs and roomy in the waist.  I felt a lot better with myself as we went to bed.  Around 4 am I woke with discomfort, my sides ached badly and pains in my chest. I got up at 8 and noticed how large my tummy looked.  After my morning coffee and a quick look on face book I showered and put the jeans on from the day before.  They just managed to fasten, tears filled my eyes and yes I sobbed in hubby's arms.  I try not to cry because I have to be strong, During the last 9 years up until recently I could count on one hand how many times I have broken down, these last two months I have cried a lot.  By doing this I am allowing the meso into my mental psyche and also it hurts Gary to see me like this.  He went to shower after me and I noticed how long the shower ran, I think he did a bit of sobbing in private. 

I had set my mind on going in the office but I rang the doctors and managed to get an emergency appointment, the receptionist put me in with my own Dr Jose.  Gary drove me to work as he was coming to the docs with me.  My colleagues were over the moon to see me after so many weeks.  I was amazed at how fast I managed to go through the file of post and sort it out, at 11.00 I left to go to the docs.  Our wait wasn't as long as I expected and we went in.  Winny told me that my regular radiologist had read the scan, he hadn't done a full report as yet, just a quick email.  It saidI had  deteriorated a lot since May, especially the right lung.  I cried again, what is wrong with me!

I told him what I had done and although I don't think the tablets work I can't be sure not taking them has helped the fluid.  He told me to lift the tablets again and also start the dicolfenic.  I hadn't started these because if you have had heart failure you can't take them.  He told me for the short time I need them it wouldn't make any difference.  I asked him to refer me to Dr Dean again but this time to fit the drain.  I don't want to be dying with a heavy stomach sitting on top of me.  He told me I won't be dying anytime soon and all I need is some one willing to treat with chemo.  He also mentioned Dr Abtin and said it was a shame he couldn't come here.  My right lung tumours would certainly get killed.  I think the tumour inside the lung is the one to worry about though.  My eyes welled up so I got up to leave, he gave me a hug and told me not to worry, see Prof Fennell first and see what happens.

I came home first just in time to remember The British Lung Foundation had arranged for me to do an interview with That's Life magazine, to help promote their new Take 5 awareness program.  Emma from the mag rang at 12.30, I felt sorry for the lady as trying to follow my history is quite hard.  The call lasted some 90 minutes, she will write it up then ring me back with her story then if I agree it will go to the editor to be published.  Gary isn't happy that I did this because of the way they sensationalise stories.  The good thing is, if it is done properly meso will reach a wide range of readers.  Also the payment will go to Mkmrf.  

I seemed to pull myself together and went back to work.  I threw myself into it, before I knew it everyone had gone apart from me and my brothers.  I had intended to talk about the future, we would start then the phone would ring and we would lose our thread, in the end it was decided to talk after seeing the Prof.  If things are bad then I will have to relinquish my job for the security of the company.  If I have chemo then I can work at home on the days I am ill but overall I need to decide if I will work set days in the office.  This year I have been so unreliable, which in my position isn't good.

Today has been hard on both hubby and I.  Gary said when he was cutting the grass Bear stayed by his side, then when he decided to have some play time with them Bear kept pushing his nose into Gary's face.  I think he knew Gary was troubled.

Tomorrow is another day I hope the tablets kick in.  I find it strange that I really don't want to visit the toilet much as it is, just hope they start working, at least I can tell my the jeans I tried on.

I'm shattered so ending this post and catch up with some recorded program's, although I think I may be asleep in an hour. 

Blustery winds and dark clouds

Yesterday the sun was up between the clouds but now and again the blue sky managed to show itself.  When it did I was sat out watching hubby trying to cut back the Laurel Bush that has reached 10' high again this summer.  The dogs looked on without interest as I tried and held the ladders steady as he went up to cut the top.  My feeble weight holding down his much heavier, really if they had gone sideways I doubt I would have had much effect!

 

Just nicely enjoying it when it suddenly went cold so back in the house and on the sofa, only to be hit with the worst stomach ache for a while.  Hot water bottle to the rescue as I sat on the sofa, feet up and let the heat do its magic. 

 

One of my best friends and her daughter popped over for an hour and it was lovely to sit and chat about something other than meso.  Tash is doing her social services degree, after spending time in the working world and taking stock of what she wants I think she will be a good one.  The problem with so many jobs these days is youngsters come straight from college and go into specific fields without seeing what life is really like.  A 20 year old social worker will be so idealistic that they can't see the woods from the trees - same as government ministers!  I won't get started on it today, promise!

 

On an insight, Lorraine's brother is registered for the Sheffield Trial, so maybe I will get something to report back on how it is going.  If it has taken this long to come to trial they must have had some excellent results in the labs, its taken nearly 5 years from when I first heard about it and went to see Prof Woll at Sheffield. 

 

My body is aching in places I am not liking.  The beginning of the year I was in perfect health and now aches in my right lung, chest and left side again that are different to my usual moaning's.  Then this morning I read about Steve Cook, how he has fluid around the pericardium.  God I remember those nights when I was hugging the puffy until the pain would go and I felt my heart could pump again without hitting something.  Knowledge has come so far forward that he will be treated for fluid in the pericardium.  Believe me, when this happens it is the worst pain ever, I would imagine similar to a heart attack but it keeps going on and on.  Doping up with morphine was always my only option, so am pleased he is getting help soon.  Although now my heart man is watching out for fluid again, so far I have had a minimal amount, long may it stay that way.  So please send a thought to Steve and hope they sort him out soon.  I doubt he will want to spend any time in hospital - none of us do.

 

I weighed myself yesterday morning, 8.13, 125 lbs, I will watch this as any sudden increase means the fluid is returning to the stomach.  Before hols I went up to 9.2, but I was eating ok.

 

Poor hubby has taken the dogs out, he looks like a commando in his outdoor clothes.  He'll need them in this weather.  What changed the weather so fast?

 

I am planning on work tomorrow so fingers crossed I don't get up at silly hours, I took a temazapam last night to help relax my back, so overslept, but still ache!  At least I slept right through, and that is a bonus.

 

I'm rambling so will go, I think, due to the weather, that I may concentrate on getting back to working on book no 3.  I have to finish 2 yet but want to do that with Liz, as its nice to discuss a couple of changes with someone else, and she has become my editor!!!  I also must sort out the money I have collected and get that sent off the MKMRF for the books that I have sold.

 

Good luck to everyone running the Newcastle Marathon, not the nicest of weather, but especially to Paul Wright who is running on behalf of MKMRF from work. 

 

To everyone everywhere, I hope Sunday is a good day for you all.

Quality of Life

A lot happens to us as we travel through this journey.  In my case I have had more pains and related problems, ie this stomach problem of bile together with the new ascities that came at me from a blind corner.

 

They tell us that they will do everything to ensure we have a decent quality of life.  Is that just to handle the mesothelioma or everything else?  Because please this bile problem has been bugging me for years!  It was part of the reason I don't particularly fancy chemo again because I know it will make the situation totally unbearable.  I think my Australian fighter and friend, Lou, is having the same kind of trouble.

 

I know you are sick of hearing me wittering about it, but I can't help it.  I have seen three GI guys, the last actually telling me what the problem is, but no one will fix it.  If the guy back in, I think 2010 had done something, when my meso was under control, instead of saying it was either a ulcer or cancer, I would be in a better place right now.  The noxious stuff burns other organs in time, my poor insides have had enough from the meso without this, and boy has it come back with a passion.

 

It also brings me to another point.  No one but the sufferer or the carer actually does see what is going on inside a home.  We, as sufferers, try to put the good olde brave face on when company arrives.  Seriously who wants to come and visit someone who is moaning about pain etc.  I am always saying to my friends Yes I will get out and do this and do that, I know that on most things it can't happen.  I can't plan whether a week next Thursday I would feel up to a shopping trip, but I say it anyway to be normal.  The carer on the other hand, hubby in my case, is quietly telling them not to make arrangements because no doubt I will fall short and let them down.  My friends probably think it is him being over protective, but it isn't.  He sees far more than anyone else, he understands that I want to be normal and do these things but he also knows that I know I can't.

 

I had a sad phone conversation with a friend who has mesothelioma.  She is in her early seventies, a fit lady as well, who was considering surgery to remove the meso from her left lung.  Unfortunately, now she has made her mind up to go through with it, the meso has surfaced in her right lung.  Surgery has been withdrawn from the options she had.  Alimta didn't work and I believe she is trying a different treatment.  I hope all goes well, she was very bright in her outlook considering the blow she had just received.

 

Another friend who has had surgery is struggling in two different ways.  One, breathlessness, her breathing is getting shallower each time I talk with her.  I have asked her several times what her specialist says and she tells me he says all is well.  I don't believe it, also she has lost a lot of weight, in fact she would be classed as starved from her body weight.  I do worry about her but I can't tell her what to do.

 

Tomorrow is my late Mam's birthday and also the anniversary of the day I was told I had terminal cancer.  Maybe some reflection there then in the morning.

 

The weather seems slightly warmer outside today, Bear has managed to get wet eczema on the back of his head, we have had to cut a whole circle out, he actually looks like a monk!  Typical though, as we will be away soon.  On top of that it seems Lexi may be coming into season.  Boy is our Lauri going to have fun dog sitting this time round.

 

To those on the outside who aren't carer's for sufferers, but friends of either party, take a few moments to wonder how you would cope if it was your loved one in this situation.  Once over I would have thought going out everywhere and doing everything I ever wanted would be the way to go, but meso isn't like a normal cancer.  It has so many restrictions going on inside, and on the outside, well we just look so healthy.

 

To the meso community, happy Bank Holiday Sunday, I hope those in pain are finding relief somehow, those on treatment are coping with the rotten side effects and those in remission, well enjoy it to the full. 

 

Me, well I'm off to pack, I fear this may be my last holiday and that frightens me, its a long time to next April when the weather would make the med a place to visit again.   

Dogs Day

I managed to sit in the garden most of the day, although the sky was more cloudy than blue but I didn't get to walk the dogs.  It was too clammy for Bear to be racing around chasing pheasants or sniffing out whatever has been around.

 

As hubby cut the grass and weeded the veg patch I sat and read another Scott Mariani book, how Bob Hope manages to tackle every armed man and come out of it unscathed is beyond me.

 

Chris called up for a coffee and a chat just as the rain started, although it only spitted a little.

 

My stomach hasn't gone down any further nor have I spent time at the toilet, slightly worried that the water tablets are doing nothing.  I am back to not being hungry, hubby made a salad for tea but I only managed a little ham, a piece of lettuce, some apple, two grapes and part of an avocado.  Not enough for a growing woman like me, Ha!  In fact Bear, who sits by the table and watches every mouthful I eat with envy, decided he wanted to try what was left.  Salad and dogs usually don't go but he enjoyed the avocado and a grape.  Usually if he doesn't like something the moment he puts it in his mouth he drops it out, so I was surprised he ate them and wanted more.

 

Lexi got a little excited outside and wanted to play, three runs for her Frisbee and she's done, but Bear joined in too.  He wanted to play football - they are really like kids aren't they. 

 

I rang to see how Chris Shippen is doing, I am pleased to say she is home but she isn't eating and has no energy for anything.  Her grandchild is to be delivered on Tuesday and I pray that Chris will be up and feeling better to be with her daughter and hold her hand. 

 

To everyone with Mesothelioma and for those who take good care of us I hope you enjoy the rest of the weekend.  If you live up north there is always Sunderland Air Show to visit. Me, well I'll be in the garden again tomorrow if the weather is ok.

A New Day

After the terrible start to yesterday I finally got out and sat in the warmth but under the clouds!  My GP arrived at 1 to check on me and my tummy.  I would be lost without him as he does more than most doctors I know.

It took a while to get comfortable and I was pleased that Bear finally stopped wanting to be by my side and disappeared into the brick shed in the garden.  He loves it there as the floor is concrete and the building doesn't get any sun. 

 

I have heard from Mary in the USA, she has contacted Prof Fennel and he has a couple of options for me to think about, so once the stomach is down I hope to revisit him and maybe get something that will push me forward and keep me alive for a good few years to come.

 

A lot of people have left words of support and comfort over the last couple of days, it does make a difference when you know someone else is going through the same but can take the time to wish you well or pass any information they may have.  Most of my fellow bloggers are doing well at the moment and I hope they all continue to do so.  Good news lifts us all and reminds us that we can keep going.  Lou has an important meeting on Monday and I pray they offer her something useful too.

 

My darkest thoughts came to the forefront of my mind yesterday.  I was frightened and thought if this is what life had to offer I didn't want to be apart of it.  Today I am back on the ladder climbing up.

 

I can't believe my stomach looks like this though, Bear was pushing through my legs when hubby took the picture.

I feel for all those mothers to be in this heat carrying such a weight.

 

I have lost 4 lbs in total, but the stomach hasn't shrunk any since leaving hospital.  I do need it to go further down so I can at least fit in to my trousers.  I know you can buy bigger sizes but then they will hang on my bum and legs.

 

I didn't sweat last night but I did go to the bathroom a couple of times during the night.  Come on fluid get sucked out of the body and back into the blood stream so I can pass you out through my bladder!

 

I have heard that many people have problems with stomachs like this and have to have them drained regularly.  I would hate to think I had to go through that pain every other week.  Although my GP was shocked they didn't insert the drain under Ultra Scan guidance instead of just marking the spot.

 

Mavis is currently on a chemotherapy called Gemcitabine, this has been used as standard in Australia for approx. 18 years with good results so I can't understand why we can't use it here as a back up for those who have had Almita twice.  Although my problem is the platins they use as agents.  I wonder why they couldn't mix Almita and Gemcitabine together?

 

To be honest, I just want the stomach to go, I can cope with the meso growing at a slow rate but I can't cope with this.  It is putting so much pressure on my ribs, chest and back.  I have lifted the MST to 160 morning and night, maybe why I woke up without as much pain.

 

On that note I am off in the shower, there is a slight breeze picking up outside and I really would like to go with the dogs. 

 

Hope everyone else is having a good start to the day, I feel for those on chemo at the moment and those who are in hospices.  We forget what our partners go through sometimes maybe one day we should have a carers day, like a mother's day, to say thank you for being there.

Changes

We all go through changes when dealing with Mesothelioma.  Firstly, the diagnosis and the hope that we can outlive the prediction they give us, secondly, taking on board the treatment and dealing with it, our families watching helplessly as we struggle through side effects, recovery from surgery etc.  Then lastly, we die.  Our families have to pick their lives up and continue on forward.  The pain and sorrow we don't know as we have gone.

 

Many who lost partners\fathers\children have ran the campaigns to get awareness out there and I have always taken my hat off to them.  This must be the hardest thing they do, they have lost the one they love yet are ready to battle for those who are fighting a cancer that doesn't back down.  Each and every day they are still reminded of what has taken their loved ones away from the family home.

 

Within face book the community takes a blow every week, someone who is known dies, the morale of those fighting and those caring have a knock back but what about those who have been doing group support for years, it has to take its toll.  These losses lay heavy with them too.  They may have never met the person who has died but they may have left a note of support, encouragement or answered a query.

 

Jan Weston is withdrawing from this world of face book.  Jan Weston along with Debbie helped the community spread, many others drop out from the community because of the reminder of what they had and what they lost and still asbestos is being used world wide.  We may be getting mines closed but still the stuff is imported and used.  What is an epidemic in the Western World will become one in Asia, India, China and many more countries.  The mean age of meso is 69, it is coming down but when will they take more notice.  Janelle was only 37 when she died last week.  I thought I was too young but this brave young mother was robbed of such a precious life and leaves behind a young family.  I can't believe the age is still so high, I know more people under 60 with meso than over, would the government or any agency fiddle the figures.  If the cancer struck more under 40 would they then release more resources into finding a cure?

 

At times it feels there is no way forward to battle this cancer.  Immune therapy is being branded the next big thing, but to those who don't know a clinic in the Bahamas has been doing this for years and with good results.  My problem of trying this is flying and then fear that I may do something that goes wrong, yet it could be the answer to my and many others who are facing the Evidence Free Zone of our treatments.

 

I must admit today my back has improved, I think the initial day of treatment and one after are the worst.  I haven't done much today, I have been awfully tired, not sure whether its the added meds for my back or the champex tablets for the smoking.  Yes I am trying again, I already think I will fail but only on day 4 of the tablets.  Its the problem of my hands, I have found my knitting needles and no doubt will become one of these square knitters.  This is where I miss my mam, I would knit sweaters and she would help on the bits I could never get right.  Many nights mam and I sat on the sofa, both of us clicking away with our needles!

 

Bear yesterday chased a fox, but I missed it!  The weather isn't in our favour at the moment, the wind has been really strong, especially in exposed places.  The sky is heavy with rain, so at least the veg patch will be watered plenty!  Lets hope the sun returns and we all get some heat into our poor bones. 

 

My meso is playing up a little bit at the moment, my vision is doing what it does when meso has a little poke out.  I am back squinting at the computer screen and my finger nails are peeling again.  I hope it doesn't last long and my eyes return to normal.  Strange how our bodies react to growth, although I guess the little army that protects our organs has to lose some soldiers to go fight the growth.  Just a shame they lose every time.

 

Another strange thing happened to me, one of the Healers from church emailed me with the name of a book called The Healing Code.  Apparently you do a routine of prays to God and you are healed.  I am always on don't believe alert for books that promise miracles but this healer is in her late 70's and fitter than most 50 year olds I know, she also doesn't usually fall for this kind of thing.  Maybe I will buy it and read what it says.  After all what is 15 minutes a day?

 

On that note I will finish the blog for today.  I hope that if you are reading this you are still in remission and the threat of meso is in the back of your minds and that of your carers.  Lets make Summer 2013 the best we have ever had.

 

Saturday Again

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

The Joys of Packing

I still can't shake this mood of doom or get off my backside and be active.  But today I did pack, early for me as I normally do it the night before.  I'm just afraid that after work tomorrow I will feel like just wanting to sit and stare at the computer screen.

 

I have pushed myself and finished correcting the first draft of the next book, that has also been downloaded to my kindle so I can read it on hols and mark any further errors.  At least my bad memory is good for something as I had forgotten the story and the ending, the last few chapters I was on the end of my seat wondering how it was going to come together!

 

Another worry about my memory is my book is advertised for pre-order on Amazon as a paperback, I can't remember doing that, nor can I get into an account to see how I did it or more importantly, who has pre-ordered it.  I am getting a little worried but hubby keeps brushing it off by saying I am over tired.

 

My leg also is getting worse, thinking I have a trapped nerve in there, I daren't let my imagine take hold, just in case.  Although last night I made myself sleep on my back and didn't place a pillow in between my knees.  I got into this habit when I was so thin that my bony knees rested on each other.  At least my bloods came back ok but I am having a few little ripples of pain in the third boob and right back, I have to hope that my short cycle of alimta works for longer than the last time, 4 months stability isn't long enough for any of us.

 

I actually got out with the dogs in the fields yesterday, the sun shone and the breeze was warm, I couldn't believe it, nor could the dogs both stayed by my side the whole time.  I left hubby with his camera and went for a walk in the woods, spying a couple of deer I tried to keep the dogs quiet but Lexi started singing, (yes she sings) and they heard so I watched them spring away in the distance.  It was good though, we were out about 90 minutes and it filled me with a I need sun and today was just a taste. 

 

I hope the weather will be nice when we arrive on Tuesday and no storms at sea, on Friday I caught up with an old friend.  She owns a spa called Broom Mill Spa about 10 minutes away but I haven't made the effort to go for nearly 3 years.  I was greeted like VIP when I arrived, it was great catching up, the children have grown so much I didn't recognise them as they came to give me a hug.  Both daughters are truly beautiful young ladies.  I got my finger nails and toe nails done as well as waxing those eye brows.  We are both to blame for the absence in seeing each other, she has been busy keeping the Spa busy in this economic down turn together with running around after the children etc, although we both keep meaning to get in touch something called life can get in the way.  I have promised once I get back I will at least see her once a month.  Mind saying that I said that to my two best friends, So far this year I can count on one hand the amount of times we have been together.

 

Hubby told me today he has managed to lose half a stone, I have managed to lose a lb, still I have packed a couple of pair of tight summer trousers, you never know I may still lose a few more so I can wear them!  I hope he can carry on losing it would do him the world of good, like me it is all on his belly!  I should have had it written into our marriage vows, and no fat stomachs!

 

One last word, I hope Mavis gets a good result tomorrow, I know she is worried, as we do, we can only hope her stable inactive continues, and if you are receiving results yourselves, I hope you get the same.

Can't decide what to do

Ok we had snow yesterday, quite a heavy down fall, today we had more, but not as much so I took the opportunity and went with hubby and dogs off to the fields.  We just got part way down when the snow and wind picked up but I wasn't going back, oh no I was out for a walk and walk I was having.

 

Bear thought he could knock me over while we were having our photo taken, believe it or not but it was snowing when this was taken but I guess the woods were sheltering us.

 

Since returning we have finished the Sunday Times Crossword, a feat in itself, and now hubby is up the shed making an Owl Box and I just don't know what to do with myself.  I pulled up the video program but I just can't get into doing any editing of our honeymoon, yes still stuck on those tapes, my computer monitor driver keeps crashing while doing it, so I am getting a tad annoyed with it all.

 

Blogger has developed some sort of problem, God knows what and keeps freezing, I think I have either over worked my black box or the whole cyber space thing is having a bad time!

 

The ironing is waiting for me, I have work for work to do which is spread across part of my desk here at home, my book to sort, although waiting for the cover I could be getting the bookmarks for chapters sorted but I just don't understand the directions on publishing it!  I could do a slide show of the photo's I have taken off the video, I could even go and help hubby cut his wood and screw sides together but I'm just not in the mood.

 

I have another guest blogger writing an article for the blog, she is a long term survivor of breast cancer and has a quirky way of writing and of course doing fact finding on staying ahead of cancer.  Although breast isn't anything like ours I hope you find her story interesting.

 

Debbie is still in hospital with her infection, Tess is getting ready to battle with chemo once again, Steve has finished and still on the body is fighting to feel Normal again, Mavis and I are still inactive stable, well I hope we are!  So why am I in this mood, my meds went in on time (sometimes taking them late can affect my mood) maybe my body is calling for one of those days on the sofa, but to be fair every night from 8pm I am usually sat on the sofa watching whatever is on TV.  The nights are quite boring because I seem to finish on the computer then its just sitting, but maybe today I need that, who knows.

I need some stimulation to get me into gear, maybe a new project but one that doesn't have me sat in front of the computer.  I was asked by someone who has read my book when I'm giving her the next one, heavens am I ready to start with the next one?  Actually I have started it but I can't get back into it!  I have set a wager with a fellow blogger that we will write together as we both want to write books - I need to get into gear to keep up my end of the bargain.  I feel that I have so much going on but then not enough, maybe I am bored I don't know!  Ever feel you start things but never finish them?

As for my meso circle, I have to say all is quiet, that means everyone I know is hopefully doing well and staying stable.  I did hear from Bud the other day, Chrissi has had cryoablation on some of her tumours and I believe is starting some form of chemotherapy.  I hope it works for her as the news it returned so soon after surgery was a big shock.  My thoughts, as always, are with anyone who is fighting this terrible cancer.

On another note, I passed my healing assessment, which means I can practise healing in the SNU churches.  I am so pleased because it was a goal that I had set after surgery. 

Well on that note I guess I should close, I hope you did something enjoyable today and something that you really wanted to do.  Me, I can hear that sofa calling my name.

Simple life

I truly live a simple life, the only things I truly plan now are holidays and have even put the boundaries out on those from 6 weeks in advance to 5 months.  I remember last February for some reason I thought Christmas 12 would be my last and as the year progressed I was sure it would be, what with the chemo having a reaction which meant I wasn't allowed any more.  Yet my miracle happened and that first infusion did more damage than those previously endured years earlier.

 

So my simply life is work, dogs, husband and holidays, although I shouldn't class work as simple over the years it has stressed me out.  The houses under development and the changes I made to the internals to make them more attractive to the buyer.  The market crashing and sales standing still, the cold winters I spent up on site.  In fact this is the first winter for a few that I wasn't having to go to site and ensure all was going as I expected.  But I always find projects to do, if not the houses then large changes to our databases that take weeks of planning and writing, I have found I need these things to keep my mind active and away from Mesothelioma.

 

I opened up a program for the housing that I haven't used for several months and I just couldn't remember how to use the thing.  The other day I had to go into the back ground programming of one database but could I for the life of me understand what I had written or indeed how to repair the error message someone was receiving.  So keeping my brain working is good on the one hand but my brain isn't working as well as it did, say even a year ago.

 

I have had a couple of people doing guest articles for me, I have found them interesting how they arrived at working for Websites that are there to help us with this terrible disease.  I have become friends with those who have published and I have at least one more to do.  Nancy is a writer for another website on Mesothelioma, she actually writes the blogs and checks out the latest trial information then turns it into something we can understand.  We were emailing the other day and it struck me how even though she has a 'normal' life, it isn't that much different to mine.  I keep saying the only thing wrong with me is Mesothelioma, (and Bile) but I don't ail with everyday problems most people have.  How often do we catch colds - Stomach bugs etc?  I think our immune system is fighting really well, it keeps us pretty much safe from many of the bugs that float around.

 

I have taken the opportunity of working at home most of this month and quite a lot of last, for the first time in years I am half way through my Audit for year end, I am hoping that we will have good weather this year and I will take more time out of work completely and spend it with hubby and the dogs in the garden or walking some beaches somewhere.  I also must start using my fantastic Nikon D3 camera more and do what I wanted to do, catch wild life at their best or worst as the case may be.

 

I would love to go back on a Safari but I know this would be out of the question, the long haul flight for a starter isn't advisable, but if you ever get the chance to do one, do it.  The best 3 days you will ever have sitting watching all types of animals in their natural habitat.  I guess my camera will just have to snap the dogs in the near future.

 

I am sitting here with the sun shining through the glass and although the morning started with its usual dread I feel uplifted.  The sky is a perfect blue, the birds are chirping away and I have the house to myself, for a while anyway.  I hope the sun finds your bones to wash across and give you a lift.

 

Special thoughts to Debbie and Tess, both of whom are having a rough time at the moment.  Debbie is in hospital with a chest infection, her start date for chemo has been put back and Tess will be commencing hers soon.  I hope the sun helps lift their spirit today too.

Memories ...

After a slow start and posting Claire's article (below) I took Mavis' advice and spent some time doing something different.  I am in the middle of starting to look back through our time together and decided to try and copy the old (and I mean old) video tapes onto DVD's.  The Camcorder doesn't link to the computer so I hooked it up to a video recorder which I connected to the TV.  I then connected a DVD recorder\HDD player to the video and set play and record. 

 

We had so much laughter reliving our honeymoon.  The rivers we had swam in that were infested with all sorts, the lovely couple from Holland we met and spent 6 wonderful days in their company.  We had forgotten more than we could remember.  Needless to say the first DVD didn't record so I changed the plugs around and connected the recorder to both the TV and Video.  We sat back and laughed as the second tape played, so many good times unravelling in front of us and the interviews we did to each other about our honeymoon were so funny. 

 

On one tape, (believe it or not I didn't even write on the covers to say which day or where!) our last day we were sat in the bar from 2 pm to 7pm, gosh I was surprised how much I used to drink, there again it was our holidays! 

 

Even after thinking I had mastered what cables went where the second tape didn't record either, well that's not true they have written to the disk, just neither will play on the computer or the dvd player arhhhhh.  Frustration is not a word I wanted to use today.  I had already gone to Tesco this morning to buy to memory sticks for my new camcorder as I thought I would do the same as last time, input the TV onto the camcorder.....but no sony have changed the way the camcorders work.  I didn't buy any of the new modern tapes for my older camcorder, which does work by hooking it to the TV and playing the video.  So I have 8 large tapes that I can't record and I am frustrated.

Although a slow start this morning I have decided to try staying at the higher intake of morphine, lifting it by 30 each time to 170 mg for morning and night, I must admit I do feel better today but then it could just be a session and I am masking it!  I never know which way to play this meso game, and as we all know, we never win.

The dogs didn't get out to the woods today, Lexi has finally stopped giving off the 'make babies' scent and Bear isn't as interested, at least the Elvis hips have stopped.  Now he is overtired.  He wandered up to me and gave me those big eyes, I gave him one of those scratches under his chin and he seemed to appreciate it.   I fear he is feeling a little unloved!

So my day has been good but not productive, the pain has been in the background, which has been a blessing, (all those prayers that have gone out for me have worked) and Sunday dinner is resting nicely inside my tummy.  I hope you all have had an equally enjoyable day.

Just wish I wasn't at work tomorrow, I guess this reliving the tapes will become a Sunday job.