Back to Earth

Haven't had much good news since arriving home, one of my meso mates isn't getting anywhere yet with treatments for the return of his meso.  It seems Dr Abtin can't help as there are too many patches, guess it would be extremely expensive and dangerous trying to freeze the entire area, and I feel quite bad about it as I thought cryo would keep on top of such a return.

After having such a wonderful week of hardly any pain the first morning back in our own bed brought on aches, so hubby swapped our beds around and we have moved the tempo one out and brought back in our soft one.  I must admit it is much more gentler on the bones but still have pain.  The heart\throat indigestion feeling is much worse here too.  Have started to wonder if it is indigestion really as am drinking glasses of milk before bedtime and it doesn't seem to help.

On a bright note, we had a wonderful time in Dubai and it was great meeting up with Benet and Jeff, this is Benet and myself after a rather filling meal at Junsi.

Since coming back I haven't had much time to myself as I have been busy at work.  On Wednesday I didn't feel that good and I had visions of the last time we were on holiday and ending up in hospital for the night but it passed.  So I stayed home and worked in the new cosy office, only to get started and we had a power cut from 11am till 8.30.  Our neighbour came to our rescue and fed us with warm soup and a casserole (we are all electric now, not even a gas ring to help).  So not much done but it gave me a chance to wind down.

The thought of the long drawn out winter ahead is making me feel low.  Hubby said lets buy the Euro lottery tickets and if we won we could buy a private jet and take you off every weekend to the sun .... what a wonderful dream but in my life nothing has ever come easy so I doubt we would ever win big, we did win £6.80 on Friday's (a far cry from enough to buy a private jet that can take you when you want infact I don't think it would pay for a return ticket to Darlington).

I hear the Carer's day went really well and many people were unable to get tickets, these events are good for getting out what is going on, yet it still seems not much is being done in the way of treatments for meso.  Which reminds me I still haven't had my scan results from August or a copy to send out.  I can only hope and pray it is fine.

When you feel rough you do imagine the worst, yet meso can be growing and you feel no different.  A point Hilary brought up the other day, how come it can be so slow growing then suddenly change into a rapid aggressive cancer? 

I am being distracted as I have put some bird seed on the window sill and as I am sitting here writing I have 3 sparrows, one blue tit and a green finch all nibbling at the seed, two sparrows are fighting as one won't let the others in!

Think I had better go and fill up the bird feeders to save bloodshed on the windowsill. 

Keep safe and well

Jan

Hot Weather - Strong Winds - High Humidity

I thought what better way than to unwind after a long day on the beach than write a bit on the blog!  (Sad I know).  I have to say that I have felt so much better, the bones haven't ached as yet and the hotel have provided me milk so a bottle before I go to bed is helping and the sun and heat is marvellous.  The strong winds are a little  problem as I need to keep my head down so as not to be overwhelmed by the breeze.  I must admit though that the humid air last night did make breathing a little harder and at one point I felt like I wasn't breathing anything useful in.

What a small place this world is, sitting next to us on the beach are a mother and daughter, after a little bit of a chat we discover that my nephew goes to school with her daughter, the odds of that happening are what? 

Had a few frantic minutes in the airport.  I was carrying my tablets in handbag for safety but got stopped at the xray machine, my handbag showed that I was carrying something illegal.  My heart stopped .. I have all the paperwork in handluggage but lets face it you have armed guards and they open your side pocket and 40 morphine tablets fall out .. not good is it.  The young lady was quite slow at picking through the internal contents in the middle of my handbag and the young solider asked if I had a laser pen .. I don't even know what one is but I pulled our my E cig - it had to be destroyed and I was led off to the detained goods office.  As we were walking behind the solider I made hubby open up the hand luggage and threw my tablets in!  I was envisaging a strip search, my tablets been taken away and kept there till morning when they could phone the Department of Drugs to verify my permission to bring in my medication.  But then you start wondering if they have changed the laws since last May and you have to keep reapplying for permission.  Thankfully my e cig was the only thing taken and my handbag was not checked again!  I don;t know what it was that sparked the interest although I did have hubby's lighter in there as well.

Have already made three calls home as Lexi is having a little bowel trouble again, the good news is that she isn't biting her bum or her foot and the girls are getting loads of loves, especially off Bear Boy.  I forgot to prewarn them about his nightly habit and yesterday morning I woke up thinking I should have warned them and found myself laughing.

His habit, which is now nightly because I laugh so much, is trying to shove is nose up your bum when you are trying to get ready for bed.  You are fighting with your clothes to keep his nose out and for you to get changed, it looks like something off a dance floor routine turning this way and that.  He wags his tail and finds the whole experience exhilarating as he has me dancing around him one hand holding the front of my top down and the other holding the back down.  It can take upto 10 minutes to get from the toilet into bed dodging him this way and that.  So when I rang yesterday I said 'by the way Bear has this habit on a night of ' and I got back 'We know, we experienced it and thanks alot for the warning not!'  Funny how he doesn't do that to hubby ......

Time for our Peach Wine (non alcoholic) and a canape or two before a quick shower then out for a couple of drinks.  Looking forward to meeting up with our friends over here, unfortunately that won't be till Saturday but at least we will have some kind of suntan by then.  Sitting in the shade with factor 50 on. 

Well had better get a move on, shower is calling to clean my skin of the sand and lotion.  Will probably loose another 300 hairs from my head when I try to comb it after washing it.

From a very happy meso person who isn't in pain (for a change) have a good night

Jan

Sunshine Calling

All it takes is a couple of days and I bounce back to being my annoying self again.  My couple of day's of self pity bugged me but am pleased to say that I am feeling physically a little better (daren't say too much as I seem to have the Midas touch on myself).

My eldest brother's CT has come back clear so he has no asbestosis and can't understand how when he has some of the same problems our Nev has.  But I have to say I am really pleased they found nothing, two of us with chest disease is bad enough.

Am dreading leaving the dogs for the week while we are away but I know that the girls will do a good job of  looking after them.  Chris is treating the experience as a holiday .... I don't think she realises she will need one after looking after them!  Thankfully Lorraine is going to sleep over to so Chris won't have to manage on her own.  It's quite strange when you stay at someone's else house when they aren't there.  I use to dogsit\housesit for both my brothers years ago and found it odd being on my own without them around.  At least if they fall out over what to watch they have a choice of  two lounges to sit in!

The sweats seem to have calmed themselves down again and at least for the last 2 nights I have had a reasonable dry'ish time, just damp instead of soaking.  I think the night sweats take it out of you more than you realise.

Have been back out with hubby and the dogs over the fields the last 3 nights and have really enjoyed it, although am wearing 4 layers of clothing already.  So much looking forward to the sunshine and heat that Dubai will give, then the only problem is coming back to the cold weather here.  I am worried about flying, if we have to circle again will this affect my lung like last time.  I know one thing if I have the same sensations as before when I get home I head straight to my mother's and borrow her oxygen.

I am pleased to hear that Alan, having done well on chemo, is off on his hols again.  Danny is also doing well and is expecting their first grandchild, no doubt will be doing a lot of driving to spend as much time as possible with the baby.  It's fingers crossed at the moment for Cliff, but I know he will be ok - he is so positive.  I am hoping that he will go under Dr Abtin's care and have this patch cryo-ablated.

The Carer's day is October 2nd and unfortunately I won't be able to make it.  It would have been great meeting up with virtual friends and putting name's to faces.  I am sure it will be a good day, I wonder what the USA speaker will bring to the table.

Better get a move on, haven't done anything yet this morning.  Keep going everyone, we need our moans to keep us sane but we must always try and get back on top of them .... I will start to worry the day I don't bounce back.

Jan

Feeling Strange

Have had 3 nights of the dreaded sweats, you know the ones you wake up soaking wet, the sheets feel like they have just been through the washer and you forgot to spin them.  This morning I got up for work came down for a coffee and found myself going back to bed and slept for another 2 hours.  The last 3 days I have been that cancer cold.  Lying in bed this morning I prayed everything is ok because I just couldn't be bothered to have to start all over again chasing treatments or flying off to get any done.  I know in a couple of days this will pass but sometimes you just wonder why and what for.

We go on holiday soon and really I'm not that bothered about it either, if it wasn't for the thought of some sun on my bones I would quite happily stay at home, but then we aren't going to get any nice weather for another 8 months are we.  Ever have that feeling its going to be a tough time ahead?

Hubby has that worried look in his eyes and that 'you're doing too much' tone in his voice, but I just wasn't made to lie around all day.  Have worked from home Monday and Tuesday on doing some interior design work for some houses the Company's built.  Once I get a new project I am like a dog with a bone and can't put it down but today that doesn't hold any interest and the feeling of why bother has eroded into it.  I have loads of work sitting on my desk in the office and again I just don't want to be there either. 

Haven't got a copy of my scan to send off either, which in a way is eating me up, I am hoping it is clear but without being told you do wonder.  I asked my GP to ring me if he ever received the report .. yes still waiting.

The cold windy weather looks set to stay for a while and that restricts me from taking the dogs over the field, one because I get cold so easily and can't warm my back up, and two because the wind makes it impossible for me to get my breath.  You find you become a prisoner in your home when the weather is like this. 

It's healing today so hopefully that will give me a lift and then Thursday aroma therapy and before we know it Monday will be around again.  I honestly think time goes by much faster now than ever before.

Thursday night we ended up calling 999 for my mother, as she had a pain in her back then into her heart.  It turns out she had a water infection, but when she was discharged they had left the canola in her arm, sent her out without her own medication (which she took in) and the new tablets for her infection. This wasn't discovered until bedtime and getting anything organised at 8.30 was a nightmare.  I went back through to the hospital but the tablets couldn't be found, a District nurse was organised to come and remove the needle, this didn't happen till 11 pm at night!  Problem was last Thursday night I was having those heart pains myself, I think it was no 5 since they started a few weeks ago.  I just wanted to crawl into bed with some morphine and take the pain away instead of running around.  When I was at the hospital waiting to speak to the staff nurse I nearly asked to be admitted myself to check them out! (I know I hate hospitals).

Enough of me feeling sorry for myself, is this a normal thing that everyone has or is it just us with cancer that goes through days like this?  I need to eat more but food doesn't do anything for me, apart from adding more discomfort...

... better go otherwise I'll end up making you feel as bad as me.

Hopefully my next blog will be happier.

Changing Thoughts

Having overdone things and not received my scan results has left me up in the air. I decided to take today off after having such a bad night last night with my left side once again killing me. Every movement hurt, kind of like having a bad back but all the way down my side.

Tonight I heard one of my meso mates has had a new growth, out of the blue his rotten nasty meso has dared to return.... I was just thinking about him the other day and smiling because he had done so well and I was so jealous as he hasn't suffered pain anything like mine. Tonight my smile has gone and once again I am hurting because a friend is back in this terrible position. What does it take to rid ourselves of this cancer.

I know that I am probably over worrying which doesn't do any good and I said to hubby (before I knew the news) that on New Year's Day we are going to celebrate and next year we are going to make it our year, no operations, no re-organising the layout of the house just pure enjoyment and obviously work still, but it will be our year to relax. Within 3 hours of these thoughts I am back wondering if we will ever be free to just thoroughly have a good year.

Another meso mate Danny is now out of hospital but I haven't heard much more apart from he is feeling much better, I am sure he went through a terrible time when he wasn't able to catch his breath.

I also had news from Oz, Cher who is a gifted artist and did me a beautiful print off her oil painting of snowdrops (I Know Chris I keep meaning to run a print for the charity) has also emailed with news of her meso returning.  Is our average about 2 years do you think between treatments?  I had hoped in the early days that once we had chemo the meso would die and never come back .. wishful thinking and very naive but hopeful.  This hasn't been a good week.

Debbie and I have been corresponding with a lady from the USA who is looking at both cryo and embolisation. She is currently on chemo and my heart goes out to everyone on it, going through chemo takes a lot out of you and a long time to get over. I am pleased to say that Alan came through his Chemo well and it did do what it says on the bottle .. he is thankfully back in remission. I wasn't that lucky second time around.

I must remember to ring the hospital tomorrow and get a copy of my scan to send to Dr Abtin, he wants to ensure that no tumour gets a head start.

Well its bed time, but if you would like to brighten yourself up look at this, a meso mate has just opened this shop and I hope he does well, I'm hoping it saves me a lot of time with Christmas shopping!

http://www.gallery500feet.com/

Thoughts to you all and keep meso free
Jan

Summers Gone

I can't believe a month has passed so quickly.  I have to hold my hand up and say that I have well overdone things over the past 4 weeks and am suffering for it greatly.

The first week we were able to start moving into the new kitchen I went crazy, washing everything before it was put in its place, moving stuff in and out of cupboards and then moving it again.  Bending and twisting, but I was on a pure high, the new layout of the house lifted me mentally and for the first time in such a long time I really felt alive.  Then came redoing the old Kitchen to make it my office\den for the winter months so when I don't want to go out in the fierce North East of England's weather I can cozy up at home and work with a log fire burning in the hearth.  I was still so on a high that I decided I was going to paint it.

For all those out there with this cancer or in remission (like me after major surgery) this is a no no and I should have known better.  What once would have taken a day and a half to do the ceiling and walls took 5 days, I wouldn't be beaten and kept pushing and pushing.  My ribs felt not only had they still been kept in concrete but steel rods had been forced through them, my diaphragm (false one) has done nothing put stab me and I had pains in my back where I never imagined you could.  But I had started and I had the bit between my teeth. 

Before the pain really hit in I also went for my results, my first words to my consultant were "I have never felt so good" (the high was still in place) so he said "Well what does it matter what your scan says" so I have no idea what my scan said.  Obviously, since the high disbursed my mind has started thinking allsorts!

I ended up taking a day off work because I didn't have the strength to move and the pain was eating at me mentally as well as physically and still I am suffering.  Ten days of a high and ten plus days of feeling ill .. not a good pay off, but on the bright side the office is nearly ready and once the carpet finally arrives, I will have the house back to normal.

The other thing I have noticed again is I can't get warm, considering it is still summer'ish, I am back in thick clothes but still cold.  I had also hoped that all this exercise of painting would have improved the look of my bony arms and put some muscle back but instead they look even thinner.

I swear if Bear wanted to he could break my puny arm when he puts it in his mouth, I don't know why he thinks my arm is a retrieve article but when I come home he rushes down the path and grabs my arm.  If my shrinkage keeps continuing he won't realise its my arm in there and bit it off!

Why did I get a newfoundland, they hate the heat and I keep turning the heat up and hubby (who is always hot) keeps turning it back down saying the dogs are too hot! 

My brother's results are sort of in, he has plaques, the beginning of asbestosis, COPD and asthma.  What a set we are, but my main worry is how he will cope with having MS as well.  I must say that since he knows what is wrong he seems much more happier.  I think he was worried in case he had full blown mesothelioma, but having what he has would send me scurrying into the nearest whole and never wanting to come out again.  Now I have to wait and see how my other brother's xray's come back because he is suffering the same symptoms as our Nev.  It would be terrible if all three of us have been affected by asbestos so I am keeping my fingers crossed.

I was regretting us booking our hol to go to Dubai next month but now that my body aches so much I am certainly looking forward to getting the hot heat of the sun blasting into each and every bone, the only problem is that by the time you come back on the plane the holiday is forgotten and the journey ruins everything.  All that getting better is instantly replaced with uncomfortable body positions and the cold weather when we get home!  I just hope I don't end up with another breathing problem this time.  On one hand though I hope that by resting up I will re find that high I had before I messed up with painting and cleaning. 

I did discover something strange though, I am right handed, my operation and meso is on my left, yet when I clean my left hand is the doer, even painting I seem to use my left more than right .. I kept trying to correct this and use my right but it didn't work as good as my bad side .. how weird is that?

Keep fighting and keep well everyone ..... and no decorating allowed THATS AN ORDER

Jan