Oh Meso - Sunday BBC1 12 Noon

Just when we think all is well in the world we hear that a person we know with this disease has gone from stable to growth in what seems like a blink of an eye.  For those that have read the website I heard from Danny the other day.  Upbeat as usual, you can tell he has a good sense of humour from how he wrote his story and to be honest nothing seems to faze him.  His meso may be on the move again but has to wait for a CT Scan to be sure.  I know that by putting this on you will all send him a thought hoping that the meso is stable and he just has a fluid build up.

Then I hear that Colin didn't fair that well on the chemo and was ill in bed for a week, Peter didn't want to return for his second treatment because the first was so ghastly, but we all know that this cancer doesn't follow any particular normal pattern, and neither does the chemo.  We have come a long way in treatments since the early 2000's and now we have more options than to give up and die but we still could do with a more varied array of treatments and more chemo's. 

I also heard for another Peter who has been looking at PDT but has had a negative reply and the treatment isn't possible on meso .. how do they rule this out .. have they tried it.  I remember reading many years ago about how the new technology of a microwave helped cure a brain tumour .. without these mad types trying it, the person in the article would have died.  I think her brother was a mad professor and managed to use his experience to create some kind of equipment.  Is that the only way we go forward by being related to some scientist or professor who has the ability to design and build something brought on by the fact that someone close to them has a disease that standard treatments can't treat. 

I started with a cold on Tuesday night, it started within 10 minutes from my first sneeze (first one in probably 4 years) then straight to a runny nose, within two hours the nose had gone to blocked and my joints started aching.  Wednesday was a washout and Thursday hubby started with the same symptoms.  It was the first time we had arranged to go out on Thursday evening to see Mowtown at the Civic Theatre and I had to give the tickets away.  But by Friday I felt great I think this was because I ate 2 packets of dried mango and my vitamin C went through the roof .. so I can hand on heart recommend dried mango's to help get over cold.  I did take lemsips but by Wednesday night my stomach felt sick as a dog, worse than normal then, which I think was down to the lemsips .. I even use the blackcurrent ones now as I can't stomach the lemon!

Also some more good news on the PR front, Dawn (she wrote round getting names for people who went under Prof Vogl) is going to be on TV this Sunday at noon on BBC1, lets hope they take note in the powers of be and do something for the thousands of us out here with this man-made killer.  I never realised that asbestos was actually used in the manufacture of some toys did you?

My hubby told me the other day that I am too factual and should tone down how I say things to people, especially when discussing the downfalls of meso, so I put it to you guys, am I too frank?  I don't see the point in pussy footing around or nurse maiding what I say, it won't make the cancer go away and I don't believe in false hope either.  I wish I knew how to do more on the website site of things as I often think about setting up a database for all to use so we can run our own queries on dates, treatments etc also run surveys,  I can't believe I said surveys as I hate them when they land on my desk or in the post at home.  But a survey for us on what we have ... if anyone can help me set it up on the website I would be interested. 

Have had a break inbetween starting this entry and now completing, I missed out on my aromatherapy on Thursday with having cold and thankfully Joyce came over today and refreshed the body.  Upon till 6 weeks ago I haven't let her near my back since before the surgery.  In the 6 weeks since she has noticed a good improvement and my lumps and bumps are improving.  Infact I can now take more pressure than I could originally so at last the healing process is on the up.  I also am stupid, went to take my mst this morning and realised I'd ran out of my 10's so I have a choice either go back upto 120 until my prescription gets filled or drop to 90 as I only have 60's and 30's ... I know up is only 10 but down is 20, if all we had to worry about is controlling the painkillers life would be great.

Just had a quick look at the TV for the night - not a lot of choice there then either ..Bear is sitting behind me doing his barking trying to tell me he is getting in a paddy with himself, he's hot, he has growing pains, he has eaten too much but wants more and why can't he go out and eat even more plants.  I doubt we would get to watch much tv in any case as Lexi has developed wet eczema and is ripping her skin apart with her teeth, the minute we turn our backs her head is at her tail and hip .. blood everywhere, or Bear is peeing where he shouldn't or trying to sneak stones in and eat them!  For the last 2 nights Lexi has had on a pair of boxer shorts to help block her, boxers use to fit our Tyke but Lexi has a different back end frame and they sit oddly, reminds me of the kids today with their jeans halfway down to their knees!

Signing off, hope the interview goes well for Dawn tomorrow and the point on meso gets hammered home, if you have snow (we do) that it doesn't stop you getting out and about and doing something good tomorrow. 

Stay safe and well and as my mate Maxi would say "Never surrender"

Veronica

Just a quickie as I have done today's blog, but I want to thank Veronica, I  looked into Prof Vogl back in 07 and then 08 recently he was very good at sending over info for my website. 

I am pleased to hear that you are doing well and have also included your blogspot down the side for others to visit too.  I have already been following your fight (one of the meso circle sent the link) and I am pleased that things are going well.  We all need to hear the good results and by following or hearing about each others experiences of treatments, be it good or bad, this then helps us weigh up which treatment might suit our own individual needs.

Also after a few emails of requests, here is an update photo of my precious boy, who managed his first proper walk today along the lane.

He is now whining in the background because he's had his meal and doesn't know whether he wants to sleep or find more food!

MST failure

I was quite disappointed at my attempt to drop the MST backfired.  I had dropped to 120 and continued down to 100 twice a day but day 4 I awoke with terrible pains inside my lower rib cage.  I thought hubby had taken to a bad dream and struck at at me during the night (at least that's the kind of pain I imagined it would feel like!).  Sleep has been poor again too, so I lifted back up to 110 and feel like a failure.  Obviously there is still something going on in there but your guess is as good as mine.

The ribs still had their own particular feeling to start with and of course I still can never get comfy on a night so the mst will have to stay for quite a while longer.  My problem is I rate how bad I am on the stuff, when I came back from the states I dropped the mst back down to 120 in total as the pain had improved, so you would think the pain should be a lot better now.  The sweats have been bad too this last week, I don't know about you guys but there is nothing worse than waking up and your chest is soaking wet with water running down into your naval!  The insomnia has been rough too, I don't really want to take tablets but have been on them twice this week.  I don't know how I use to function before without sleep but these days I can only do it for a couple of days then I am no use to anyone, I have been told that the sleeping pills aren't addictive so at least I shouldn't get hooked, but you do.  When I was awake, after having a nightmare inside a dream (strange eh) I laid awake again from 3 am till 6, most of that time I was thinking I wish I'd taken a tablet!

I mentioned that my best friend was suffering badly with pain in her hip and leg.  Her last physiotherapist told her it had nothing to do with her hip and was her groin.  I made her go back to the docs (thinking the worst) and he signed her off .. no evidence - no xray - no bloods!  Thankfully her Ward Sister had a word with one of the surgeons and he rang Chris, the Xray she had last July shows that her hip was just about bone on bone .. that doesn't say much for the professionals she has been seeing over the last 2 months does it.  I will never complain again about how hard it is to diagnose meso, if they can't get a simple hip problem right then what hope is there for the rest of us!  She has to have an operation, an being a nurse I would have thought she would be okay with this, her throat has already closed with nerves and there isn't even a date for surgery yet!

On a good note Bear boy passed his Kennel Club Good Puppy Test and was awarded with a little certificate and rosette for all his hard work.  He acted like butter wouldn't melt at training school, get him home and its back to normal!

Also am waiting to see if we can finally fly, have wrote to the Consulate of Dubai to see if I can take MST into the country, I love Dubai, its so easy to get to from up here, direct flight from Newcastle and for 9 months of the year the weather is perfect.  Have fingers and toes crossed. 

On a sad note, Peter hasn't fared well through his first chemo and doesn't want to go through the next dose.  I can totally appreciate where he is coming from as I felt the same for the first 15 days every time I had a dose but by the time the date for the needle was there I offered my veins up and went through it.  If you have terrible side effects you really don't want to go through it time and again, there aren't many who suffer that badly but when you do it is horrible.  Colin didn't have too bad a time but his bloods haven't come back so is being delayed for a week, usually that happens further down the line but as long as the chemo does it's job what does it matter.

I am also sad to say that Danny has fluid again and sounds like the doc is having problems draining it, meso can cause little pockets of tissue and makes it impossible to remove all the fluid from the pleura.  I sincerely hope the meso isn't on the war path for him because he has had a good run of remission and having to start deciding on what to try next is not the easiest of decisions. 

What we need is another chemo, you can only attack meso twice with Alimta, as with all chemo's the bodies own defences recognises the poison and doesn't respond well too it the more you have the less effect.  So come on scientists find another fix for us ... whether I would do chemo again I don't know and I sincerely hope its a decision that I don't have to face.

This time last year I was still in hospital, I still had that one drain attached which caused so much pain in my chest, but I was walking to the xray department at least 3 times a day to get myself going.  Funny how in hospital the pain wasn't that bad once I moved into the ward, but when I came home I was in agony.  I walked much more when I was on the ward, yet when I came home I could hardly walk from the bedroom to the stairs, and climbing the stairs was a feat in itself!  I remember Gary would let me sit in the living room till about 11.30 on a morning then make me go and have a shower, which meant 20 minutes getting up the stairs and a good hour, I would just stand under the shower head and hardly move, then he would help dry me off and dress me, getting those leg stockings on was the joy of all joys then by 2 I would be sat on the sofa again dreading the next time I had to move!  (Still like that today but now I call it laziness! - only kidding!). 

Before I bore you to death I am going to leave it here, I have decided to let Bear go for a walk over the lanes today so before the predicted rain comes guess I had better get moving.

Reliving the moment

It has been a strange couple of days, the 15th was my 1st year anniversary since surgery and even John my surgeon sent me a anniversary message.  I had posted a card to him also but I know he hadn't received it by his message.

I thought it would be a hard weekend on hubby but even my best friend Lorraine called up and she was reliving the day.  I hadn't realised how on edge they both were.  Having arrived at Sheffield at 4.00 pm expecting me to be in PCU I was still in surgery and they waited another 5 hours for me to come out.  My only memories are of waking at 3 am and wishing I was dead then being hoisted in the air and nearly crying with pain, then my first night on PCU, when I was so uncomfortable and the nurse called Richard looked at me with despair in his eyes as I just could not get comfortable and wanted to rip all the wires and tubes out of my body!  Seems I missed quite a few hours out!

I am still alive though and without that surgery and all the pain of recovery I would not be here to bore the pants off those that read this blog.  It's also good to know that others too are still going strong and although I have probably had the roughest journey through recovery of them all, I have to remind myself that I had undergone a lot more treatment before hand than anyone else.  I had even had my gall bladder out within the same 12 months so my body had been tortured quite alot.

I have asked if Dr Abtin came to England could he demonstrate his cryo on me to rid my left side of these nodes but I guess its not likely.  I do hope that the convention this year brings more response to worldwide treatments offered and our British laws can be relaxed a little where these treatments are concerned.  I often wonder how the big chiefs of this country would feel if their loved ones were suffering with mesothelioma and told to go home and die?  I bet they would be changing the system left, right and centre to ensure the best possible treatment becomes available - maybe I am being a little too hard but having known a few people personally who have died from mesothelioma I think I have earned the right to be hard, let alone battling this disease myself.  I thank God that we have some dedicated Doctors who have a passion for helping those with this disease but alas their are too few for the numbers that are emerging.

I wonder why meso can lay dormant for years, does it start poisoning our system from yearly on but we just cope with the toxins or damage in a normal way until it builds up and then starts multiplying in numbers.  We know how wonderful the human body can be and it still amazes me that it can repair itself even under the worst circumstances.

A friend of mine rang the other day.  A couple of close friends were mowed down by a wagon when they were out cycling, the wife was lucky to be alive and was unconscious for over three weeks.  Image waking up not knowing what happened to you and being in so much pain, its bad enough when you sign up for it, but to be in ITC with no memory and horrific damage to the body?  Yet 10 weeks later her pelvis is starting to mesh back together and for the first time she was able to sit up, with lots of support, but that is progress and a small miracle.

Over Christmas an old colleague of mine rang, he has set a candle in every church he has been to over the last 5 years.  His late wife had mesothelioma, if I have already mentioned this please forgive me, and after undergoing surgery to remove most of her chest survived another 25 years, she died of something totally different but survived one of the most deadliest cancers out there.  Anyway he has promised to light a candle in Mongolia when he gets there.  When he lit one in Japan he sent me a card and I was mystified at first about the post mark until I opened it.  This is why I think I am still going sometimes, other people have faith in you surviving and that adds to your own positive outlook on still being here.  I hope he is feeling better himself having had to go through an operation over Christmas.

Still down on the morphine, at 200 a day I might even think about dropping it another 20 this next week.  I don't feel that much different, apart from my eyesight is getting worse!  This happened last January too but I am going to ignore the fact that my eyes improved after the cancer was removed as I don't want any negative thoughts entering my head .. now the weather is improving I will get myself to the opticians and get them tested!

Should you be contemplating surgery to debulk this terrible cancer please don't let my ramblings put you off, it was the best thing I ever did and I know when I email other survivors they faired much better than I, so please consider removing the cancer while you are strong and healthy .. I know it sounds strange to say go through it and put yourself through hell and a long recovery but the cancer is gone and if you haven't tortured your body as much as I have you could be back on the golf course within 5 months and living a normal life.

As for hubby, after getting this first year out of the way, he is becoming much more relaxed and I can feel the tension slipping out of him.  No more heart attack pains, no more wondering whether I will see next month or not, no more booking holidays within 4 weeks of going, long term planning has now become part of our lives again, which before this time last year was something we would never contemplate since 04.  I know he still bans me from doing certain things and going out when its cold and windy and gets annoyed at me when I do something that I know is a challenge too far, but overall he has been a solid rock for me, sometimes unappreciated I have to admit.  Lorraine pointed that out yesterday when she said they were standing by my bedside and hubby said "I love you" and I retorted "That's all well and good but how's that going to help me?" This was the day after surgery, but I cringed when she told me yesterday.

The only way now has to be up and I mean business this year, pilates to strengthen, food to nourish and hopefully begin a normal life.  Maybe my expectations are still a little high but I owe it to John and his Team for all those hours in surgery and the aftercare at Sheffield, my GP's, District Nurses and my Macmillan nurse, my friends and family and all those who have supported me through the last year .. including you.  I don't wallow very often, just seem to when I write on here, but this is a cleansing of the negative side of me to ensure I face the day stronger.

My other best mate is suffering badly with back\hip\pelvis\knee pains, no one seems to be doing anything positive for her and the pain is wearing her down.  Up until this she had no idea what pain was like day in and day out, as a nurse she is now empathising with her patients and has put me on a pedestal for dealing with what I have gone through .. bad idea.  But with something so uncomplicated to sort out like doing xrays or ct scans they could find out exactly what is wrong.  4 different therapists have said 4 different things, occupational health have told her its a bulging disc, another said its inflammation in her hip joint, but no evidence to back up any diagnosis.  It has made me thankful, although it took years before I was diagnosed, that something so dangerous as mesothelioma is now being diagnosed in early stages.

Here's to my new life, one year on, I hope that many of you are now in the same position.

One year On

This time last year hubby was driving me down to Sheffield, neither of us taking about the future but concentrating on the road ahead.  In the shower this morning I was also thinking about my last holiday and the terrible heart attacks I use to have.  It's been a year and two months since my body saw any proper sun and that was November when Dr Abtin blasted the tumour in my upper chest.

I am feeling strange with myself, I am blaming the reduction in morphine as I am sure it is doing something, the sweats have been bad and I guess that's what reducing must do, after all you get them when you start on the stuff along with meso and the menopause!  My pains don't seem any worse but my chest does feel heavier.  Have dropped them again by another 40 a day but I have a feeling this may be a little too soon so may have to go back up by 20 only monitoring this will tell.

No one ever really gave an explanation to the heart attack kind of pain, it use to come on and I would go quiet for a few minutes, unintentionally, then this awful pain would start, sometimes I wasn't sure whether it would go full blown or not but as the months passed on it always did.  Hubby always seemed to know when it was happening, whether my colour drained or my eyes changed I have no idea but he would be there with the severdol and the next 60 minutes would be sheer hell.. All I can say is I think it was the fluid building up in the heart sac or a new growth was sprouting, but then that would make them sprout in a cycle and no one thinks they do!  At least I don't suffer from them anymore and that in itself is a blessing.

Colin has come through his first chemo really well, apart from feeling queasy he is doing okay, Peter is also fairing well considering but he has already gone off food.  It's strange how chemo can affect your body.

I also heard that 'H' is now in remission from her trips to Germany and long may that last, we are all striving for quality and quantity of life and getting the balance isn't always easy.

After all I am still no better on a morning but am exceedingly pleased to still be here, sometimes the quality is well under par but the mind is so powerful and positive, if I have a bad day I always hope that the next will be better. 

Immediate recovery from surgery is quite fast but its the stuff that takes forever, like the muscles and nerves, that drive you mad.  I know the first 6 weeks for me were torture, especially the drains and the weakness, but you are alive, then it's the slow recovery period and having to deal with the frustration of not being able to do what you use to, it's not always easy being positive but the way to look is always forward.

I need some sun but now we have the pup I don't want to kennel the dogs, Tyke's first encounter with kennels was when she was 10.  Lexi barks all the time when in them and I don't want Bear coming back from them like Lexi, a fully qualified barker!  Yet options are still slim on flying, Dr Abtin thinks I'll be okay and shouldn't have a problem, Andy thinks I may have a lot of pain and could cause damage and I haven't heard back from John.  I crave the sun and the warmth, I always woke up better when on holiday, especially in Dubai.

Sorry don't want to moan today, the snow fell again last night and Lexi had me up at 6, about 4.30 she came and slept at the top of the bed and I awoke with her head pushing into my back, then I started cat napping as she was moving her head here, there and everywhere, then she jumped off the bed and I heard her pitter patter down the hallway, so I jumped out of bed and found her peeing, yes peeing, in the spare room!  So I chased her down stairs, which meant waking Bear up so I threw them both out and proceeded to clean up the pee.  let them back in, put Bear back in his cage and climbed the stairs, freezing and hardly breathing!  He whimpered for a while but I must admit I warmed up and fell asleep.  I can't get over Lexi, never has she peed in the house since she was 9 weeks old!

I should be doing some work but I was ordered to stay away from the offices yesterday by big brother as everyone is down with stuff.  Why do they come in when they know all they do is spread the germs and round and round it goes.  I did do quite a bit on the link up yesterday, but with feeling out of sorts myself today all I want to do is lazy around .. which is becoming too much of a habit and I know I am starting to get lethargic, which in turn will do me no good whatsoever.  It's not right going from a work-aholic to feeling like this, maybe there is something in this S.A.D?

I'm still here and for me and my family and friends that's all that matters, surgery has been other's first choice, for me I had never contemplated it until meeting Dr Abtin, but I am pleased I did.

I missed healing yesterday too, I was so absorbed in a database I didn't see the clock spinning round, hubby was out and time just past me by.  That's 4 weeks since I've had any hands on, will have to get something sorted as am desperate for the hands on approach, although today my aromatherapy is due and hopefully that will ease some of the discomfort I am feeling.

Better get my act together and do some work, lets hope I don't wake up reliving tomorrow when with scalpel in hand John carefully removed my lining.  (Did I say carefully?  how many ribs broken and fractured!, but I guess he was careful around the lung and heart!)

Now I wish I had kept a video diary, that would surely spur me on to realising the depth of how lucky I am

Dog's Life

Thought you would like to see what I mean about the dogs being covered in snow!

It's all fun and games

But the dogs seem to enjoy it

and they still want to play