Rainy Thursday Morning

After dosing myself up yesterday and that pain finally receding to the back of my mind I went to work, I had arranged for the Auditor and I to have a meeting so I had to go regardless.  The sun was shining which lifted my spirits.

 

Before I left for work I spoke to Andrea, her dad has being fighting mesothelioma for, blimey, it must be 6 years now, although his meso is steady he has developed NSCLC which is so unfair.  One killer cancer is bad enough without another.  It was good to hear her voice, I haven't seen her for a few years, I think the ball at Newcastle, was the last time. 

 

As soon as I walked in Mal, my second in command, asked how I was after working so long yesterday.  I told him I had a crap night and it was probably down to lifting and moving files from drawers and shelves.  He had offered to keep getting up and getting me stuff but I can't have that, he would never get his own work done.

 

I didn't accomplish any work, and came home around 1.15 in time for lunch and then Liz, my editor and chief book reader, landed.  We worked through the second book, correcting my mistakes, have only the last 6 chapters left, so hopefully it may make Kindle and the printers by Xmas.

 

I didn't get any further information from Dr Breen but a friend in the meso circle sent me the website of his facility, why couldn't he just do that originally?

 

http://www.ablationforcancer.co.uk/cryoablation.html  This says what they can do, and yes they do treat tumours on the chest wall and in the lung.  How come I have never found it before?  The amount of searches I have done for ablation and never once has this shown up!  I am going to fill out the submission form and see what happens.

 

A couple of days ago I received a request to ask for a link to another help site - I emailed back to ask if they were attached to lawyers, nothing has come back saying they are but for any information you have to fill out a form.  This leads me to believe they sell on names to lawyers in the states, so please be careful who you give your name to.  The site is called mesotheliomagroup.com.

 

I also received a sad email this morning, Chrissi has taken her wings.  Over the years Bud and Chrissi have sent emails just to say how she is doing.  She had major surgery a couple of years ago but the meso came back.  She passed in her sleep and thankfully without lots of tubes and wires in her.  She put up a brave fight but another life was needlessly ended due to asbestos.

 

I again have woken up with that rotten pain in the chest, I soaked the bed last night with sweat, even my pillow was wet!  At least my dreams didn't wake me with pain last night and I slept reasonably well, although I can't understand why being so wet didn't wake me up, it must have been a residue of the morphine that kept me knocked out.

 

I can't decide whether to go to work or stay in the warmth of my office at home.  The weather outside looks cold and wet, I think we will be in for a long winter.  I have also asked Joyce to come over this afternoon and maybe massage my legs - this time I will stay away from my stomach, I don't want any bile reappearing in my throat.

 

I have been drinking milk before I go to bed and having a sip during the night when I wake up to visit the loo.  I think this is doing the trick - but I am terrified of it coming back like it did before.

 

On another good note Bear's head has finally started to get better, it has taken some time to heal which was helped by him trying to scratch it as much as possible and rip the scabs off that kept forming.  But you can't watch a dog 24\7.  He has been very much by Gary's side, giving him face butts.  Bear doesn't lick, his affection is putting his snout into your face.  As Gary was digging all the potatoes up Bear kept nudging him and butting his face. 

 

I live to fight another day, I am hoping this stomach of mine will remain at this level at least until I have seen Prof Fennell next Tuesday.  Who knows by the next week I may be on treatment and these cancer pains will recede as the chemo takes effect, I just hope I can cope with the treatment.  Having chemotherapy is never a walk in the park.

 

Till the next blog.......

 

 

 

 

Sunday Sunny Sunday

I dreaded going to bed last night so sure I would have the same bad night I had before.  I said to hubby if you wake up during the night and I am lying on my back please roll me over.  Bless, he did once during the night.

 

Bear came up at 5 wanting to go out but I vaguely heard the order Lie Down so I just drifted back to sleep.  He came back up at 7 and out of bed hubby got and stayed up.  I came down at 9, I needed the additional sleep but any longer and my body would not benefit from it.  I felt so much better, I had somehow stayed mainly on my left side.

 

The sky up here was grey mixed with blue so I made my mind up I was going with the dogs, after a little messaging on face book I showered and actually managed to get a pair of hipster jeans on.  Tight where the button fastened, but on.  The fields were really windy, Oops and I didn't take anything to cover my mouth.  I managed, both Lexi and Bear loved the fact I was with them and stayed close by me the entire walk.  It was wonderful to feel the fresh clean air on my face.  Once down the first field the wind wasn't as harsh and I enjoyed watching Bear go and sniff here and there.  So many butterflies this year and so many different coloured ones.  Also a beautiful blue dragonfly stayed close by the pond.  They are so beautiful to watch as they dart here and there.

 

As hubby has started Insanity, I sent him for some decent trainers yesterday.  Mine are looking rather shabby so he said we would go and get me a new pair as this shop in Bishop had such a large range.  He also needed some shorts to work out it, accidents could happen in his loose fitting ones!

 

I tried on a couple of pairs but my feet weren't comfortable, I didn't think at first and bending over pulling off and putting on shoes my stomach was starting to hurt.  The trousers were obviously pushing in and forcing some of the fluid back.  When I finally choose a pair and was waiting for hubby to pick out some shorts I had terrible stomach ache.  I thought I was going to collapse with it.  The pain was similar to when you know you have to go to the toilet, but I didn't want to go.  I left him in the shop and made my way outside, holding my unborn stomach.

 

He drove home like a bat out of hell, I had to tell him to slow down as I felt my insides were sloshing from one side to the other.  Hot water bottle and stripped off jeans the pains started to recede.  So it was an hour on the sofa.

 

I watched and counted as he worked out and put some roast potatoes in, not that I was hungry but it is Sunday.  I have managed to eat some veg, a slice of beef and two small roast potatoes, not a lot really, but at least it has gone down.  The dogs were pleased as they got quite a lot of dinner.  By the time my stomach is drained I think I will look like a skeleton!

 

My head is still all over the place, one minute I have no thoughts of what could happen or what is happening, the next I am worrying and on the computer reading articles.  Mavis has been a great help and found a site where a discussion was on about ascities.  If anyone else would like to read it:

 http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.inspire.com%2Fgroups%2Fovarian-cancer-national-alliance%2Fdiscussion%2Fcoping-with-ascites%2F&h=LAQGFnbIC

So its work again tomorrow, I have no idea what I am going to wear either.  I know my friends brought some of their wardrobes over but the dresses are more for the cruise than work.  Even if I wear leggings I haven't got anything to go on top!  I never thought a woman in her 50's would turn up to work with leggings and a long top on.  When I think back to the ladies I used to work for when I was in my late teens, you called them Mrs and they always wore suits.  I can't remember the last time I wore a suit for work, probably just before I was cut open in 2004.

 

 

There has been a lot of writing about the new trial to take place in Australia, Amanda has wrote about it on her blog and Nancy (Guest writer on here) has done a cover too. 

 

http://www.mesotheliomahelp.net/blog/2013/08/australian-mesothelioma-clinical-trial-brings-a-cure-one-step-closer-to-reality

 

There are quite a good few articles on this site, but I do like the way they break information down.  I don't know what it is anymore, probably my chemo brain, but following medical information seems to be hard work for me these days.

 

Well I am off to sit on the sofa and catch up with a few TV programs, I can't wait to see what is going to happen in The White Queen.  Boy how devious people were in those days, although I wonder what's changed.

 

Good luck to those having treatment this week, I just wish chemotherapy didn't have to be as harsh on us as it is.  One day someone will invent a tablet we take, like a blood pressure type, and mesothelioma will become a chronic rather than terminal disease.

 

 

 

Sunday Fresh Air Sunday

Waking up with a thick head and a heavy chest I thought I would end up with a nothing day, but I managed to make myself go out with hubby and the mutts and thoroughly enjoyed the fresh air.  It was cold but a dry cold, if that makes sense, and free from a strong breeze.  I did manage to lose the lens cap from one of the new camera's I bought hubby for Christmas though - Oh dear bad books!

I also heard some sad news today that knocked the stuffing out of me, a friend within my meso circle isn't well at all and it makes you realise how useless we all are when it comes down to it.  We can share our feelings or our anger but we can't do anything about the way our journey with meso takes us when all else has failed.  I only hope that if the battle is at an end it is without pain and suffering.

Another friend, however, has been in the UK for the festive season, coming over from Dubai they were all frozen.  In fact I am sure that they forgot how cold the UK can be.  I remember when I lived in the States how I looked at home through rose coloured glasses.  I would say what beautiful green countryside and sunny skies we had - see rose coloured glasses, we have the lush green but not sure about the sunny skies.

I spent most of the afternoon trying to work a problem out in Access, after reading a book on programming I thought I could solve an old problem, not a chance and all I got for my efforts was my headache hurt even more.  Hedex just hasn't lifted it, I even took two before I got up and had another hour's sleep.  I just hope it goes by in the morning as I don't fancy the thought of my first day back with a headache from hell that kills every time I move my head.

I had some lovely photo's to load today of the dogs but for some reason blogger isn't allowing them to upload?  I thought it would be nice to have an uplift looking at the dogs.

 

Yesterday I noticed Lexi was tilting her ear again, although now totally deaf, she still needs them cleaning but will she let you.  Every two weeks its a nightmare trying to get the juice in then the next night with cotton wool to clean them.  I even used Q tips today, what a load of wax came out but I had to chase her around the kitchen several times!  She wants you to clean them because she shoves her head into you but at the same time fights like a cat when you do.  It has become the same with brushing her, once over it was a joy as she would just lie there, now she moves everytime you empty the brush!  At least it is good exercise.  Speaking of which I think I will need to start doing some shortly, putting my weight back on has led to a couple of places where it has landed, mainly the tummy and also my legs, they look like tree trunks when I look down.  Its a few years ago since I went to pilates and then I had to stop because I was causing a lot of pain in my side, I don't think I can do sit ups either - maybe its time to drop the sweet content of my diet and see what happens.

On that note I will leave tonights blog, I hope that those who are waiting results get the Stable or Shrinkage word and those of us who are in no man's land stay there without further growth.  I am praying 2013 finds that something special that can create a terminal into a chronic illness.

Quick post

The cruise has been an eye opener for me into how hubby really feels, he has hidden away his own feelings wanting each day to be the same as the last so when I finally lose this battle for life he will have deprived himself of memories.

This posting will be short due to the terrible connections we have on board ship!

I have always said it is hard and being the sufferer we stay strong for our partners, they too are trying to stay strong for us but we should discuss this not both ignore the pains that hurt.

The heat has been wonderful but the meso is growing, I can feel the changes with each day that passes, my big fear is the chemo and how my poor stomach will deal with being turned into mush again, I have enough acid in there already, probably could dissolve a body if they drained me and used it!

The ship has landed at Italy, after over 7 days of red hot weather we have hit thunder and lightening, we have one full day tomorrow and it's over.  I wouldn't say the cruise has been restful, the total opposite, but I have enjoyed it.  Typical though, where we are today is beautiful and flat, the first place we could have walked for miles, but weather will not allow!

To everyone facing news, scans and treatment I wish you all well.  Special thoughts to Helen and Lou.

Ups and Downs of living with Meso

Yesterday was a cold, windy and stay in the house day, sometimes I feel a prisoner has more life than I do when the weather is against us.  I just couldn't be bothered with anything at all. 

I have had some news back from Dr Abtin and he is surprised at the slow growth rate of my meso, infact I don't think he has ever come across it growing so slow before.  Of course this makes me happy but I still hate the thought that it is still growing and causing problems.  When one part of your body isn't working right other area's suffer and in my case at the moment my eye's are.

As well as my GP, Dr Abtin and Prof Suh are trying to get a hospital on board to learn the technique of cryoablation.  I watched part of the BBC2 Cancer program and saw the cyberknife, the same one that I have details about on my website from 2008.  I am hoping that the Royal Marsden could be persuaded to think about cryo as they seem to look to the future in new and exciting technology.  If you go to the Royal or Harefield please mention cryoablation, the more the word gets out the more open minded someone might be.  As you know I had the fast growing nodes cryoablated last March (11) and they haven't come back, I was lucky that he targeted the ones that had grown the fastest and maybe the shock of being killed slowed the others that were growing.  I need the same to happen to the new ones that have appeared, as they haven't undergone the wrath of cryo, and maybe they too might just stop in their tracks.

Of course he also told me that I have a few growing near the pericardium, which after all the problems and pain I endured before surgery, this didn't put my mind in any comfortable zone.  Before surgery I had meso in the pericardium and believe me it was like having heart attacks on a regular basis.

Trying to get a new technique is not easy, sometimes I wonder how things do hit the market.  I can understand the slowness of drugs but laser, cyberknife etc you see it there and then.

I had a note from Andrea, if you are booking holidays this year please check her prices out, you can find her link under Holidays and Travel down the left hand side.  For every booking she contributes £5 to a meso charity.

The sun is out, the sky is blue but the wind is strong, hopefully by the time I have showered it may have dropped enough of me to leave the prison camp and get some fresh air.  Hope you all are feeling normal.

On a sad note I would like to extend my condolence's to the Peart family for the loss of their son Kevin, although not from mesothelioma he has fought a lung disease for 8 years and needed 2 new lungs, unfortunately at 50 he lost the fight.

Waiting Game

In our hearts we know that things have changed, those pains have gotten a little worse, the breathlessness more noticeable when making the bed or climbing the stairs and in  may case chasing the dogs around the garden.  I have been waking with a really heavy pain in my chest, I think it is around the heart and I dare not think to hard about it.  I am blaming the smoking, which I know will not help and probably why my surgeon has never responded to my emails.  Smoking will irritate the lung and cause thickening of the arteries but I am weak  willed returning to nicotine, and if this is what is causing this, it is my own stupid fault.  But I fear it isn't the smoking but the meso and who can I talk to about it?  In my mind's eye on a morning as I wake I find myself trying to file away parts of my body into drawers and lock them .. strange eh?

I didn't get the phone call on Friday at 6.15 so either the scan hasn't been read or my Doc is on holiday.  We don't think we are waiting to hear the results but both hubby and I have been acting weird, not mentioning it but both trying not to think about what the report will say.

I have noticed too that my eye sight has dropped, normally another sign that my body is off trying to fight a battle it cannot win, the only good thing I can say is that I have held my weight and if anything getting a little fatter.  Maybe my addiction to fruit gums isn't helping there but its weight on and no matter whatever it has been manufactured from its on my bones.

I am behind with emails so if I haven't been in touch recently its because I have been overworking and now I am exhausted.  I said to hubby I promise I will take a day away from the computer and not turn it on but the weather isn't great and being stuck in the house what else is there to do but work.  This weekend instead of finishing some sales literature I have been messing around with house designs for the next new site.  Don't know why I am bothering because part of me doesn't believe it will ever get off the ground, or maybe not in my lifetime anyway. 

I read in meso uk that keyhole pleurectomy is what they are doing now.  I wish that had been  the case for my last surgery instead of the great big cut from the top of my shoulder to the bottom of my diaphragm.  This will make healing much better and I would imagine the whole procedure a lot less painful.  I guess it will be similar to what Dr Owens did back in 04 apart from he didn't remove all the lining just put lots of holes in it.  I hope this new style of surgery does take off, especially for those with a small amount.  I wonder if I could have put back surgery till now but then we never know what and when to do any treatment.  Would I have been alive and strong enough if I hadn't done 09.

I think this is probably the way H went, his recovery has been simply marvellous, although now after surgery comes the radiotherapy followed by chemo.  What a nightmare we put ourselves through for the sake of living.

I just can't imagine dying, is it the next step to something different or are we dead. I seem to think about this more and more and its always in the shower. I don't discuss it, I never really have, occasionally I joke about it and once I did have a conversation with the macmillan nurse who said I should talk to a counsellor about it. But really would a counsellor be able to tell me if we are dead or do we go somewhere else?

Back to the waiting game I hope and pray it is stable, I like everyone else involved with  mesothelima hope that a cure or stabiliser is found soon.  I wonder if I start some treatment will these new annoyances disappear or will they stay and be joined by new and much worse ones.  I honestly don't know where to turn next.  Once I have the scan I can contact Harefield Hospital and see what they have on offer and I have a trial to hear about at the Bobby Robson Clinic this week.  If I am stable I will opt out, if I'm not then I guess I will have to put my thoughts together and make some decisions.

Chin up everyone, tomorrows another day.

Old Symptoms

I have had so much going on that it took me so time to realise that I am reliving some of my symptons before diagnosis days.  The pattern of a stiff neck, insomnia and nightime sweats.  I was sitting yesterday infront of the wood fire massaging my neck and it clicked into place.  I didn't need to get my old diaries out as I knew as soon as the penny dropped.  Obviously, I can't produce fluid as I have no pleura for the meso to annoy but the rest are in place.  Over the last year I have had a few of these and if I had written them down I guess it would coincide with the growth of the meso.  I hope I am wrong but I think my meso is doing what it use to do, have growth spouts every 3 months.

Since having surgery on my eyelids I have had hubby take a daily photo of my face.  When I went to look at the photo's of myself, and I was shocked.  When did I grow so old and so haggard.  I have no weight at all in my face,  lips are drawn no weight in my cheeks and honestly if I met me I would think what a miserable old cow.  Having gained weight on my body how do I put it back on the face?  I remember my hairdresser, Tarn, telling me he had fillers - think I should ask what they are.  I certainly wouldn't want to wake up next to my face every morning, so God knows how hubby does!

Yesterday I had the house to myself and sat infront of the damn computer all day.  I was trying to work out this new program Dreamweaver that I have for web design.  Honest I even have the dummies book and I think I must be a dummy.  After 6 hours I still haven't achieved anything - they say technology is getting easier so I guess I must be getting dumber.  I originally wrote the websites in Frontpage (sounds like I do it a lot but it was just jansjourney and the windlestonehomes one) but Frontpage doesn't work anymore, half the functions don't load up on web browsers - technology improves and old and tried systems no longer do.  I had planned on a little relaxation, catch up on a film or two, maybe change a few things around in the kitchen, you know women at home things, instead the day flew by and in what I class as limited time, the day had gone.  Maybe I should rethink what I want to do with my life rather than let things I don't understand use that precious time up.

I have no idea what my plans are today, I only know I will not be sat in front of the machine all day, whatever you are doing, as Linda would say "Do something Positive".