Wednesday, 30 May 2012

Heavy Crushing Pains again

The sun has left the North East of England but not without a few good days, I have more colour from my few days at home than my week on holiday.  The colour helps us look a lot healthier than we are,  this morning I looked grey and my tan just didn't manage to hide it.

During the night I had that terrible feeling of pressure right in the centre of my chest, where my heart should be, which then turned into a weight that was oppressive.  I was deciding whether to take some morphine from 1.30 am because it just wouldn't let me sleep, but I didn't want to disturb hubby by trying to find it in the dark.

When dawn came and it was light enough I took a couple of pills and slept for another couple of hours, pain was still there but at least it eased enough so I had some sleep.  Maybe stress has helped it along, I returned to work on Monday and ended up doing a long long day, followed by another long and tiring day yesterday.  The pain kept at it until I topped it up again with some more morphine around 11 this morning, on top of my usual quota of the stuff!

Hubby rang me at work to ask if I had a spare 10 minutes as he wanted to show me something, so I grudgingly said ok.  He picked me up and took me over the fields and said when he had the dogs out just 20 minutes earlier  he had seen a young calf just born to one of the Deer's.  Both mother and calf were lying in the long grass and he had hoped they hadn't moved.  We didn't see them but the thought lifted my day... strange how something in nature can help you feel better.

After having a few near normal days I think having the pain back so badly makes it feel worse, I just can't win with myself.  I also read something the other day, morphine does something funny with your liver which in turn produces more bile, so maybe that is what causes my rotten stomach feeling in the morning.  Some mornings (not many) I don't feel as bad, so maybe my morphine requirement fluctuates quite a bit, who knows but then how can you monitor whether you need 10 ml less or 10 ml more on a day to day basis?

To add more disturbance to our daily lives, Lexi is back in season and these next few days are  hormones alive, he is already giving it the hip movement to fresh air and she is pushing her bottom in his direction ..... a lot of sleepless nights ahead as she will no doubt sneak down stairs to be with him .. talk about teenagers, dogs are just as bad!

Hopefully the rain will stop shortly as I would like to have a wander back over the woods to see if the Deer has returned to our area.

I hope my body isn't turning the clock back to fast and this pain is going to become regular and bring about along those heart attack pains I went through from 07 until the heart sac (pericardium) was removed.

Still no further information either on whether Dr Abtin will have company from Harefield to watch the wonders of cryoablation on mesothelioma.  I am still hoping they may invite him here.  At least I know for sure that flying to LA won't do my lung any good.

Hope you are having a better day than me.

Sunday, 27 May 2012

Meso in the English Sun

This week has been one of the worst in my life, and for once it has nothing to do with mesothelioma.  I must admit though that my pain hasn't been that bad for UK. 

The pain suffered after the flight to Majorca wasn't as bad on the return home but Tuesday was my worst day for pain in my back.  I have noticed that my kidney area is starting to stiffen up more than before.  As you all know I love the sun, it makes the aches ease and usually removes all the pain, but due to circumstances this week I have decided that stress can also cause alot of the pain.  Last night after spending the afternoon in the garden I ended up taking a muscle relaxant to ensure I didn't wake up all stuck together.  Sometimes I wonder if I still have endo as well, which could explain some of the feeling like I am stuck together feeling.

Since Wednesday afternoon I have been home in the garden,  I can't remember a day that I have never  turned on the computer and done work, linking in and sorting this or that out.  I decided enough was enough and walked but it isn't that easy when the company you work for is owned by your own brothers. 

I certainly chose the right week in terms of the weather as you can see me and Bear have enjoyed spending this time together, and he has certainly enjoyed the extra treats that have been on the table by the sunbeds!

Trying to load his and Lexi's photo's but it just isn't working tonight and the system seems to be stalling.  Never mind you will have to put up with me and bear together.  I looked at this shot and can't believe how much weight I have managed to put on.  This time last year I looked like a skeleton, I didn't have any arms, just pins and my belly was non-existent.  Well I guess the weight is good for me just wish it didn't mainly sit in the one place us women hate... our stomachs!

By using Factor 50 on scars and radiated area's I have so many different shades of suntan, I know I am getting on and really should wear a full bathing suit but my mind still thinks I am young (well some days anyway).

With the light nights and spending so long outside I have just realised how late it is, usually I would be in my chair by now fighting to keep my eyes open and at the same time dreading going to bed knowing I will wake up with pain in the morning.  It is amazing how the sun can change your routine.  Speaking of routine, Lexi has come into season again, I always remember our dogs having less as they got older so I think it must be something to do with having a boy around that has changed her clock.  By the end of this week she will be rubbing up against him and giving him the come on, he will again stop eating and follow her everywhere panting and breathing heavily.  I hate this period for him and thought of moving to my parents house for the 4 day period, only trouble is if I go their I start crying! 

Still a lot to think about and if the sun stays out tomorrow I may find myself in the garden, decisions we have to make.

Monday, 21 May 2012

Meso Relief Doesn't last long!

Sorry Amanda I couldn't catch the sun to bottle it for us, I tried sending a harpoon with a very very long string so I could attach it to the plane and drag it back - but to no avail, the sun (even if it was varied weather) refused to move and come to the UK!

My meso pains left my body on Friday and for the first time since I can't remember when I felt human, no holding my side,  stroking my 3rd or lifting it to support the weight, no back ache, no heart ache ....I was normal.  Short lived though, only home less than 24 hours and the iron cage has descended already around my left side, my 3rd has started its firery nips and my body is regaining pain.  I said to hubby I would rent or buy somewhere in the heat if we didn't have our babies and his face fell, meaning he won't even if we didn't have the mutts.  His idea buy a heat lamp and sit in front of it, I thought why not buy 20 and put them all around a room - oh isn't that central heating and that doesn't work.

I have down loaded the 6 photo's I took on hol and am pleased to say that this is the wonderful couple I met on hol, Ken and Linda.
We hardly discussed the meso, after all meso had gone on holiday and for Ken I hope it stays there.  Just sorry that the chemo has left him with a limp but like many others I know he suffers no pain .. yes you guessed the green eyed monster crept into my mind - why do I have so much pain!
The holiday was certainly good for both of us, I managed to read a couple of books and hubby bought the Daily Mail for the 4 pages of puzzles and crosswords that kept him occupied.  I did feel sorry for him as he has got into the cricket stuff that is on in India but we couldn't get the channel nor would it play on the Ipad for him.  Flying back I did feel the change in my chest again, a few sharp pains in the back and a heaviness in the chest.  My GP had kindly organised an X-Ray for me at Bishop hospital so I called in this afternoon and had another dose of radiation.  I have become friendly with the operator and it was nice to see her on this side instead of the CT Scan, she knows my fear of needles.  I'm sure we will shortly find out what my air pocket is up to after flying. 

I haven't had as much time to catch up on the rest of the mesothelionians blogs but I am sure I will get up todate by the morning, I hope Debbie doesn't feel any worse (sorry I read your blog after I emailed you this morning!). 

I hope the sunshine follows us and the sun gets back into all our bones, sufferers and carers alike, nothing better than heat and sun the natural way.

To Tracy, keep strong and I pray things get sorted out soon.

Sunday, 20 May 2012

Meso In The Sun Part 3

After a good start, then downward tumble on Wednesday then in between cloudy/sunshine thereafter we have enjoyed the break. I have gone from high to low and high again in the space of 7 days, wonder how hubby copes with me sometimes. We are hoping we will be able to rent the room for an extra hour or so as we don't leave till 3, wish we were going later as the sun hasn't been coming out till 4 on an afternoon, the worst thing about holidays after airports is the packing! I woke up yesterday with no pain, the sun had seeped into my bones, and I felt alive. Last night we had a few drinks in the bar with a lovely couple we meet, my head is paying the price this morning. Ken has been left with a dull (for want of a better way) leg after his time on chemo. I think fate sometimes has a lot to do with things as Ken and Linda sat down on the sun beds next to us And his walking stick went flying, obviously kicking up a conversation, on the evening he passed us and stopped for a few minutes explaining that his chemo had left him with a stick, I asked what cancer and nearly sprung out of my seat when he said meso. Yesterday we had a bit of a chat but hardly spoke of our mutual friend, there is life and meso. We meet up with them on the front for a couple of drinks and had a really good laugh. T thanks for your words of wisdom, happy memory created! Today we will leave what looks like great weather here to cold weather back home. My wonderful Gp has organised for an XRay but I hope that I don't have to go back through those pains again of Tuesday night/Wednesday. Time to start trying to pull round and pack before getting some last minute much needed rays in my bones. If I could bottle the sun I would bring it home for us, maybe it would give my fellow mesotheliomians a lift too, having a quick catch up Mavies could certainly do with some.

Friday, 18 May 2012

Meso in the sun -Part 2

The weather came back yesterday and my aching bones once again started feeling good with the heat penetrating right into the marrow, unfortunately the temp drops so much and without the humidity factor (like in Dubai) it was cold as we went to dinner and the wind picked up, needless to write what I am going to say but the sky today is Grey and cloudy. I woke up this morning in agony, my back felt like I had been doubled in half all night and was. Trying to straighten up, my 3rd boob ( will have to give it a name) was heavy and I really was concerned about the well being of my mental state. What am I doing fighting for survival when all I get for it is pain and more pain. I did receive some fantastic news today, Dr Abtin is making progress with Harefield Hospital... I understand from his quick email that a Radiologist Team may go to Ucla and watch cryoablation on a meso tumour. It is certainly a step forward and something we have been trying to achieve for some 4 years! Although this may not help me hopefully they will see the benefit and commence the procedure in the UK. After just the short flight here I think it may prove that my air pocket does increase each time I fly and long haul could certainly prove to be more dangerous, my chest and heart feel so heavy, I have again lifted the morphine but am not receiving the benefit of pain relief. I was going to load a picture to prove the sun shone but I can't load one from the IPad, so you will just have to believe me when I say I have one day's suntan! As soon as I have more info on cryoablation in the Uk or any info to help push its along I will let you know. One last thing, but not least, Please visit the travel site and pledge money for another meso sponsor run, When I get home I will publish more info as I don't know how to post links on this thing either! Hopefully I will be able to take my top off soon and relax, otherwise they might find me hanging from the balcony!!!

Wednesday, 16 May 2012

Meso not in the Sun

What a disappointment this morning, the blue sky of yesterday was replaced with heavy grey clouds today, I swear I jinx the weather. Yesterday while lying in the heat my bones felt great we did at least a two to three mile walk right around the bay no breathlessness at all and I felt good. On the way home from dinner the temp dropped and by the time we got to the room my back had internal icicles stabbing outwardly - I was nearly human but alas short lived! Two friends start chemo for the very first time and I pray all will go well, knowing Debbie, Theo will certainly be in for a shock, facing the treatment for the first time is so unnerving, you are on tender hooks waiting for the side effects to take hold. I heard from Denise and am pleased to say her first one has gone well, very slight side effects so long make it continue. Hubby has opened the crossword so guess its time to go and make my brain do some work. Just hope the sun remembers to come back, knew we should have risked a long flight and gone to Dubai!!

Sunday, 13 May 2012

Meso to the sun

I have been so looking forward to getting away, the sun on my bones, the stress from work lifted from my shoulders yet all week I have felt off.  I haven't had the energy to even sort my clothes out and yesterday I asked hubby to go through my stuff and pull out things for me to pack.  I must be crazy but honestly I just couldn't pull the energy together.  I finally got around to packing about 4 this afternoon, with his choices, and that took longer than usual.

I know I am a little under the weather, my temp is in meso land coming in at 35.5, it has been as low as 34.5 in the past and I was once told this couldn't happen, well whoever said that should be ashamed of themselves because with me it happened regularly!  But at least it is only down to 35.5 but I don't feel well.

Now that I am seriously considering chemo the nightmares of what I went through not only in 2007 but as far back as 2004 are coming to haunt me.  The terrible pains as my stomach had to tolerate even a drop of water in it, the feeling of being half dead, then the slow recovery of my water works, appetite and energy.  It is frightening to think about it and the more I have set my mind on that date the more my body feels ill!

My 3rd boob has been extra painful and heavy this week to and I seem to be forever holding it up with my hand (subconsciously) as I walk around... Odd looks - You bet! 

I am hoping I am just worn out and as hubby said last night as I was falling asleep, if I feel no better after some sunshine then things aren't well so lets hold back the thoughts until a weeks time.  Easier said than done when you don't feel good.

Seems Mavie's and I both have had bad times on chemo yet so many people out there don't and that's what I have to remind myself when writing, don't scare off those that are facing it but then you need also to remind people that what they may go through is normal - what a going on.

The wind has spoilt the weekend and I was so looking forward to taking the dogs with hubby, I am sure Bear is drifting away from me, as all I seem to do recently is groom him and have no funtime with him.  I will miss the mutts but at least we know they are home in their own environment rather than in kennels.

I really want to thank those who email me and become my friends, for the support that you give me, you keep me strong in times when I am weak and remind me that I have to go forward and battle on.  I feel lucky in some ways that I have managed to live this long with such an ugly cancer but very unlucky to be struck down by it.  I have met some marvellous and courageous people along this journey and I hope to meet many more, but to those I have become close too, on days like today you give me strength.

All I can hope is tomorrow is a brighter day and that I wake up feeling better, my temp normal and ready to relax and enjoy our holiday.  I hope that the weather here gets better and that anyone holidaying around the UK manages to find some sunshine.

I promise I will pick myself up and dust myself down, what round is this now with meso, 7 8 or 9?  I wish my remissions could have lasted longer, especially after surgery, but hey there's that saying "That's Life"

Will probably update next week if the hotel has wifi and my ipad lets me sign in!

Thursday, 10 May 2012


I hate cruelty to animals and sign petitions and do donations,  I hope my regular and even drop ins will take two minutes and follow this link to sign this one.

I recently signed the petition to urge Thailand to crack down on illegal dog smuggling. Will you join me?

Eating dog meat is widely regarded as uncivilized in Thailand, but smugglers in northeastern Tae Rae export an estimated 30,000 strays to Vietnam every month, at a price of $10 per head. In Vietnam, grilled dog meat sells for three times the price of pork.
Stray dogs are corralled daily and crammed into wire cages before being smuggled through illegal river borders. Though most are exported to Vietnam, a minority are butchered and sold as "meat" in Thai open markets. Local residents complain about the disgusting practice.
If you have a chance read some of the other petitions like Clubbing Seals, protecting tigers etc, I only hope that this does help someone think about what they are doing.

On another note, yesterday I had some healing and I hope that it causes the same reaction as last week.  I know that I am hoping for miracles and it is a great leap and I always ask for healing to go to everyone with mesothelioma.  If one night you wake up dreaming you are being sick maybe the healing is working for you.

I read Mavies' visit to the hospital to have her line removed and her feelings of sitting in the chemo lounge hit it back home with me.  My heart goes out to everyone that goes through it and my stomach turns everytime I think about it.  I was pleased to hear that someone who had been on the Adams trial had managed shrinkage, we never hear from the horses' mouth (so to say) whether treatments are working or not.  It would be good to hear more from others who are trying different things to find out if there is shrinkage, stable or it didn't work.  This information is invaluable to those who are thinking about the next step.

I heard from another mesothelionian who has had her first one and so far no side effects, she is on day 11 so I hope she continues to be the same. 

I have felt extremely tired all week, just no energy, my legs seem heavy, my back not that full on icy feeling inside where I can't get it warm, but cold nonetheless. 

Maybe I am just in need of some sunshine, I know I lived for 4 years without the knowledge that I had cancer and I still managed to lay a patio, revamp our house, tearing ceilings down and rebuilding walls, but I was never this tired.  I wonder why it takes more out of me now than it did then?

Time for my weekly aromatherapy, I hope you take the time to sign the petition and I will let you know if I dream tonight about being sick!

Sunday, 6 May 2012

Sunday Meso Sunday

I haven't been at my best this week, mentally I have been up and down and having made the decision that I am not going to do anything until September for treatment I am now setting my mind on staying well.  On Wednesday I had healing but on Thursday night I had one of my reoccurring dreams where I am throwing up, but I can't get it out, on Thursday I was throwing it completely up, I hope this is a sign that maybe the cancer is reducing - now that would be a miracle.

For the first time in a fortnight I got over the woods with the dogs, Bear and Lexi stay by us when I am there but today he could sniff the cattle and sheep and was going a little too close to the fence.  I'm sure the young bull got a scent from him because he started towards us - I doubt I could run fast enough!  Last week Bear went into one of the thick undergrowth's after a rabbit and we found a tick on his head when he came back so now I am paranoid of him getting them.

The Cattle taking care of the lambs and Sheep
At the top of the ridge I decided it was time for a rest and I just couldn't resist taking a picture of them both waiting patiently for me to get up.

It's been a sad week for us also, as its 3 years since our Tyke died and on Wednesday it will be 7 years since I lost my Dad.  I can't believe it, 7 years since I last finished my first cycle of Chemo either.  Where has that time gone.

Lexi & Bear taking a breather!
I heard from Graham this week and am pleased to say that he is doing ok and even met two other gentlemen who had surgery, 5 and 3 years ago and both are symptom free, I am so envious but so pleased to hear this. 
Tyke as a Puppy
I have heard from a couple of Mesothelionians who are on chemo at the moment and all seem to be getting results.  That is the kind of news we want to hear, but just the thought of the needle let alone the poison makes me shiver. 

 Although I've been in the office all week I didn't see my eldest brother till yesterday morning when I popped in for a couple of files.  His first question was why couldn't the Doc in London do the cryo, why have I decided to hold back any treatment, honest it was the third degree.  I know that my brothers worry but sometimes I don't think they, or should I really say him, understand that you just can't keep putting your body through treatments.  It is only a year since my last cryo, but then a year in meso time can be what is left of someone's time.  I have been lucky that I can say it's been a year since I last tried something.  I was speaking to a newly diagnosed lady and  my heart went out to her, her life as she knows it has just crumbled, together with that of her family.  No matter what cancer you are diagnosed with the feeling of helplessness is the first one.  She has been told that she had time to decide what she wanted to do and I must admit she has already started chemo, in total it is 6 weeks since she suddenly took ill.

On an ending note, as we drove back from the fields I saw my eldest brother in the tree's, chain saw back in hand.  I don't know how he does it and never seems to get tired, up at 5.30 every morning and to bed at 11.00pm earliest - wish I had some of his energy.
Thankfully H & S aren't about!
Whatever you are doing this Bank Holiday I hope that your meso doesn't get in the way of your family life - it manages to ruin everything else.

Thursday, 3 May 2012

Personal Responsibility

Yesterday driving home I heard 8 ads on the radio all with no fee no win claims whether it was an injury or PPI.  We are battling in the House of Commons to keep the no fee no win for people who really do need it and who have had a crime committed against them and these so called law firms are destroying the good that came out of this because they are just interested in £ coins rather the interest of the clients or the real issues here. 

I believe if the police did their job and actually caught criminals, the CPS did their job and actually took the said criminals to courts then half these lawyer firms wouldn't have the time to be touting for people who have tripped over a neighbours front step and believe they are owed thousands of pounds, to courts hence leaving the fraud out of no win no fee for people who really need this.  Those cases they loose have to be paid for and that means the fee's from cases like ours go up and up, again the people who don't loose out are the lawyers.  I know we all have to make a living but if it wasn't for such stupid laws and lack of personal responsibility the Houses of Government won't be looking into the mess that these law firms have caused.  Mind saying that they have caused much of it by all these stupid Health and Safety laws and Politically Correct Crap they keep bringing out. 

Nevertheless  Us Mesothelionians weren't out to get this cancer, we didn't trip over, already have insurance but have been in a road accident, We were in a environment accident brought on by Unions and Governments alike who hid the truth about the damage asbestos could do and does do.  As usual its the little innocent person at the end of the row that looses out and those who are on the band wagon of 'I slipped and Fell'  no win no fee's have probably never taken any personal responsibility for anything as long as some one else foots the bill.

Feel better now that's off my chest. 

I thought you would enjoy this I did.....

A farmer named Bill was overseeing his herd in a remote mountainous pasture in Scotland when suddenly a brand-new BMW advanced toward him out of a cloud of dust.

The driver, a young man in a Brioni suit, Gucci shoes, RayBan sunglasses and YSL tie, leaned out the window and asked the farmer,

"If I tell you exactly how many cows and calves you have in your herd, will you give me a calf?"

Bill looks at the man, obviously a yuppie, then looks at his peacefully grazing herd and calmly answers, "Sure, why not?"

The yuppie parks his car, whips out his Dell notebook computer, connects it to his Cingular RAZR V3 cell phone, and surfs to a NASA page on the Internet, where he calls up a GPS satellite to get an exact fix on his location which he then feeds to another NASA satellite that scans the area in an ultra-high-resolution photo. The young man then opens the digital photo in Adobe Photoshop and exports it to an image processing facility in Hamburg, Germany.  Within seconds, he receives an email on his Palm Pilot that the image has been processed and the data stored. He then accesses an MS-SQL database through an ODBC connected Excel spreadsheet with email on his Blackberry and, after a few minutes, receives a response.  Finally, he prints out a full-colour, 150-page report on his hi-tech, miniaturized HP LaserJet printer, turns to the farmer and says,

"You have exactly 1,586 cows and calves."

“That's right. Well, I guess you can take one of my calves," says Bill.

He watches the young man select one of the animals and looks on with amusement as the young man stuffs it into the boot of his car.  Then Bill says to the young man,

"Hey, if I can tell you exactly what your business is, will you give me back my calf?"  

The young man thinks about it for a second and then says, "Okay, why not?"

"You're a Member of the European Parliament", says Bill.

"Wow! That's correct," says the yuppie, "but how did you guess that?"

"No guessing required." answered the farmer. "You showed up here even though nobody called you; you want to get paid for an answer I already knew, to a question I never asked. You used millions of pounds worth of equipment trying to show me how much smarter than me you are; and you don't know a thing about how working people make a living - or about cows, for that matter. - This is a herd of sheep...”

“Now give me back my dog!”

Tuesday, 1 May 2012

Still no warmth

It's now Tuesday and our boiler has been out 4 days.  It is also the 1st of May and generally we should all be out dancing round the May Pole (well maybe not me)  and celebrating the months to come as well as the months passed.  Keeping up with my fellow mesothelionian blogs and emails brings home the fact that we are all a mixed bunch going through various degrees of this cancer.

I have new friends just starting out on this journey, having to introduce the poison of chemotherapy to their healthy as well as ill cells, then those recovering slowly from surgery with pain and those recovering from surgery still having mesothelioma. Those who have finished treatments and back in remission and those not so lucky.  I don't know why this has happened to us all, such a mixed and varied group of people from one end of the world to another.  We get so wrapped up in our illness that many forget what our partners are going through too.

True, they aren't having the pain and the treatments, but they share with the worry and the death sentence that hangs over our family life.

Today I am voting 1st May as our Partners and Family Day, let us raise our glasses to them, for being there through this, for the support and comfort.  They have the same fears as we do but feel helpless because they are unable to take the pain away or kill the cells that grow in our body.

It is true people who you meet with always ask after the one with meso but never ask after the one who is giving support.  Are they not as important too? 

I have said so many times that I worry about hubby and what will he do when I am gone, that scares me more than death itself, many of my meso friends have said the same and I think it is important that we let our partners know how much we worry about them and care for them.

On a totally different note...
We have had a new friend in the garden the last 5 or 6 days, a racing pigeon that has got lost.  We have tried to catch him\her to return her\him but it is not interested.  It waits every morning to be fed on the windowsill and has made friends with a wild pigeon.  This morning it was wings at dawn, they decided to battle each other with wings clattering against each other.   Part of me hopes the owner doesn't arrive to take it away as these two certainly have something going. The only problem is that they are chasing the young cold tit's and blue tit's off, why can't they learn to share!

On that note must get a move on work is calling and I have a busy day, end of month and all that.  I hope whatever you are doing today is something that you want to do rather than something that you must.