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

I'm so cooolllddd!

I don't know about you guys but I just can't get warm, the heating is on 24 (far to hot for the dogs), Gary is making fires up in the little sitting room and the kitchen and the house still feels like a block of ice.  I even have marinawool leggins on, three layers including cashmere but my body temp is freezing.  I can't remember being hit this badly before with feeling cold until I had cancer, but still have never felt as cold as this.  When I was a kid we didn't have central heating and had winters much like these so I'm blaming the meso for me feeling this way, or maybe it's because of the chemo.

Funny you look normal and nobody seems to think you should feel under the weather.  I get frustrated at myself and wonder how others are coping but then I remember that they haven't had their chest ripped out and gone through hell over 5 years!  I'm not feeling sorry for myself I'm just stating a fact.  I forget what I've been through and feel a fraud when I just can't do things.  I wonder how my mam's carers can want to go out in this, after all they are a lot older than me, but there again they are in good health.  Good health - arrh that's the key.

My chest has been feeling extremely heavy for the last week, I was going to make an appointment with the GP but with the weather etc I haven't got around to it.  I'm not coughing anything up (there again I hardly ever did) but I am starting to wonder if I have a chest infection.  I have reduced the MST down by 60 a day, I can feel my ribs hurting more but there again its cold so I can't say whether the reduction is wrong or not.

I just want to feel normal, it amazes me that Graham (EPP) has managed to climb mountains with only one lung whereas I struggle climbing the bloody stairs!

It's good to hear that Colin hasn't suffered badly on his first chemo but Lorraine said to me yesterday "you always say no pain no gain and I'm worried it's not working because he isn't suffering!"  Can't think of an answer to suit.

With this bad spell you would have thought my appetite would have improved but even that has gone downhill.  Just don't fancy anything, even if I'm hungry nothing tastes nice or I'm full after a few mouth fulls, hubby is getting rather annoyed at my lack of enthusiasm over food.  I wish they could invent a pill that you took that gave you everything you needed without the effort of cooking and eating, but then most people have enjoyment in eating.

Bear has scratched to go in the cold utility, normally I would leave the door wide open but have closed it on him, god help us when he wakes up and finds himself of his own.  Last night hubby took them both out about 8.30 in the snow storm and they played nonstop of the garden.  When they came in I had two large balls of snow, towelling them off is a nightmare as Bear thinks the towel is a game and hangs on to the corner of it.

Going to sit in front on the fire, problem is I'll get cabin fever being stuck in the house but I really don't want to step out into the cold.  It's minus 7 I think outside.  Although I did open the window and put loads of birdseed on the windowsill.  Already the mistletoe thrush has been at it, my blue tits our hiding this morning, usually they tap on the office window.

Hope if you are suffering from the cold as much as I am that you can find a nice snug area and stay warm.

Scan Reading

I feel quite lucky that I have a couple of professionals interested in how I am doing, infact I would say I am very lucky.  I sent my scan off to the usual crowd and was pleased to receive a very early reply from Dr Andy Owens.  He does make me laugh with some of his comments and I find that a real comfort and a more enjoyable read.  It's good to know that my right lung is looking normal, if a little expanded to take over some of the work from the left, but at least it is doing it and no trace of that ugly meso in their.  The left he is also pleased with, although my air leak shrinkage has nothing to do with me taking deep breaths its shrinking due to more fluid!! 

I was pleased to read he likes the new grouping of my ribcage, I wrote back and told him it will be a new form of fashion in years to come and everyone will want to have their ribcage re-aligned.  It was good to know that he feels this is why I still have so much pain and discomfort but alas that will not improve and over time probably get worse (my words not his).

He also wrote about the new things that could happen at James Cook and mentioned how difficult it is to get new trials up and running, funding required, patients enrolled and of course all the extra paperwork.  I kind of have him interested in cryo-ablation and I think if Dr Abtin had more published work on the subject it could well become a form of treatment up here in the North.

I hope it could come off, also there is rumour of electrochemo, I have no idea how it works but I presume they inject the chemo into the site then send electric currents in to set it going .. sounds good?  I am sure Andy will put me straight on this procedure at some point in time.  I still have high hopes on cryo, no mess, no poison and very little discomfort.  For RFA you are knocked out and in a theatre, for cryo your under a CT machine while the probes are inserted and semi awake, no overnight stays and a couple of anti-flam's to help ease the discomfort.

In the last year I have heard of more new cases of meso than the previous 4 in our area, it's good to know that doctors are looking out for it more but sad to know that so many of us have been caught out with the cancer. 

I still woke up with that rotten stomach feeling and today have decided to knock 30mil off my morphine morning and night, I will try it all week unless the pain gets to bad and see if this is what's causing the stomach stuff.  Also if I can manage on 120 am and pm then maybe in another week or so I can reduce even further.  After all MST isn't a good muscle pain relief. 

Andy, bless him, said try drinking red wine as that relaxes the muscles, I think I would need to drink quite a few bottles every night which would lead to me having liver problems if I go by my luck. 

Just thought I would share the good news, only need two more responses and if all the same I can sit back and relax, 2010 is going to be a treatment free and cancer free year for me and dare the cancer cross me it had better watch out.

Just need to get myself feeling better and there will be no stopping me, for all of my friends out there on treatment now, remember this is your year to kill the mesothelioma and start a new life in remission.

The Mick Knighton Ball is the 15th May in Newcastle, please check out the website for more information.  I know quite a few will be there and I believe Debbie is travelling up again this year.

Hubby has been baking this afternoon and I can smell the aroma so must go and investigate.

Jan

Local Hospital

I called in at Bishop Auckland Mara suite today to pick up my scans for distribution to USA, Sheffield and Middlesbrough.  I know that the suite had been busy on the morning but I was quite shocked at how quiet it was by early afternoon.  When I was going through to James Cook the lounge was never quiet. 

Bishop was rebuilt and opened in early 2003 and already they have lost the A & E, alot of surgery has been moved away and now it seems that all thoracic medical and surgery will be moved, along with the chemo lounge for all treatments.  It is a great hospital, clean, ideal for parking with plenty of room.  I can't understand why they are trying to close the place down.  Yes we need centres of excellence, more cases through the door equals better techniques and developments on the surgical front, but chemo is chemo, sometimes a hip operation is a hip operation and what new advancements can be achieved there. 

Our other local hospital is Darlington, its old, unclean, poor parking.  The labour government doesn't want people travelling to hospital using cars etc, but when you're ill you want to go door to door, not walk half a mile for a bus etc.  The PCT should be looking at what is more benefical for the patient sometimes rather than whats more benefical for them.  As our parents get older we want ease and accessibilty to be able to take them in and out.  I know I sound like I'm against large hospitals but I'm not, but equally I think that the large towns should also have their own hospitals.  They might not be able to treat everything but if someone needs a big operation they could take them to the centre of excellence then after the critical surgery time is over bring them back to the local hospital where parking isn't a problem and the relatives haven't miles to travel.

Cancer patients need that little bit more of personal attention, we don't want to be stressed out driving 30 miles to the main hospital, driving round 30 minutes for a parking space then find yourself sitting in the corridor having chemo administered while everyone is walking past.  (I've been there!)  Why can't our local hospitals still run the chemo lounges and patients see their consultants at their local hospital.  Bishop Auckland covers a wide range of out of area villages and small towns.  Travelling into Darlington, Middlesbrough or Durham adds time, more carbon footprints and a waste of a good functional hospital at Bishop.

In today's world all of our records and history are suppose to be on a networked computerised system, you should be able to have your records pulled up anywhere so why can't our little hospitals be utilised more for outpatient appointments, xrays, CT's etc and leave the Centre of Excellence Hospitals as the major and critical surgery and medicine centres.  This free's up lots of car parking spaces and more time for Doctors to spend with patients.

Another thing, when they make appointments why don't they give new patients longer slots for the first appointment, this would help ease the Doctors running late.  I know on the statistics they have got round this by saying your appointment is 3.00pm you get called through at 3.05, they take your weight then you wait.  On their sheets they have marked you down as been attended to, government targets met!

Guess that's my moan for the day, what I will say is that before Bishop's new hospital even opened the doors people rumoured that it would only be open for a few years before it was closed down, I hope and pray that the local trust changes its mind and keeps this quality hospital open.

Last Year

It feels like yesterday when this time last January I was panic stricken with the thoughts of surgery.  My PET scan was a couple of days away and depending on the results depended on my having life saving surgery.  At this time I was so thankful for the cryo because without it the kidney would have been infected and God knows what else and surgery would have been a no no.

I was trying to stop smoking and counting down the days to the 15th, having met John Edwards only the once and being sure I would never go through it or be accepted to suddenly been lifted out of the thought of death's clutches to the thoughts of how bad the pain would be when waking up from surgery!  I was nervous and frightened. 

When you have journeyed so far through this cancer and your hope has just about diminished then you have a thread of hope, you are holding on for all its worth yet at the same time you aren't sure whether your being teased.  If the PET scan had come back bad then I would be cast off and left to float in the sea of despair, if the Scan (which it did) came back ok for surgery the worry of actually going through such a major operation was just as terrifying.  I spent a lot of time conversing with others who had gone through the surgery, especially Cliff but you never actually spell out your worries of Will I Make it Through, after all when Graham went through the EPP back in 04 the rate of success was 50% getting off the table, thankfully the surgery has improved and the odds are much greater, or put it another way the rate of death during or in hospital has greatly reduced to 3 - 5%.  You still have to weigh up the factors of if the surgery can debulk everything. 

I remember not wanting to lose my diaphragm, I have no idea why, but that was my biggest worry and when I awoke with a tube down my throat I knew I had lost it! 

As time has come on I am sure more techniques have been developed, after all more surgery is being performed.  I guess removing the lining isn't as easy as you would imagine, if your removing the whole lung you are cutting off blood supply etc but I guess your not so worried about being slow and delicate around the organ itself, whereas peeling the lining you are working around the lung which must take a little more patience and it has to come off in one piece otherwise it could leave a nasty tumour lurking on the lung.  It is amazing to think that such a thin veil of tissue can be removed.  I can't peel an orange without leaving some of the skin so these Doc's must be so skillful.

I guess this is why the pain is so bad too, but then again some don't have as much pain.  I wonder if you have more pain the more you have gone through.  After all 04 I had a large tumour cut off the lung and chest walls were swept clean (lots of blood on that one), radiotherapy, chemo, chemo, cryo and cryo then surgery, no wonder my poor body still hurts. 

The debate of surgery first then chemo, radiotherapy, cryo or rfa after will be an interesting one.  If you go straight for surgery maybe it isn't as painful because you are only attacking the area for the first time.  The lady who went through surgery before me is leaving a normal life.  She went directly for surgery without any treatments first.  Or maybe due to the length of time you have had the cancer causes an impact on how much pain you have, after all the weight of the tumours on your nerves etc must cause some damage along the way.  I'm not looking for excuses for the pain but trying to find logic and reason. 

This morning I still felt yak, from the back of my mouth to the pit of my stomach, my headaches have come back and at the moment my eyesight is playing up again.  Last time my eyesight played up the cancer was growing at a rapid rate, I don't think it is now, but you do pick up signs which have happened previously but you have to be logical and put it down to factors of life too.  So this morning stomach still feels crap and I have decided that somewhere is a gene that remembers what chemo was like and is reproducing that feeling every morning. 

The strange thing I find still after a year is when I lie down I can hear another breathing, it could be an echo of my heart now that I have a patch but sometimes its really loud and other times quiet.  It can gently rock you to sleep or drive you mad depending on how tired you are. 

Guess I had better get moving, haven't showered yet and the decision of Sunday Roast at Lunch time or Tea time hasn't been taken.  Will probably end up about 3pm as am sure our Lexi is going to be taken over the fields for a run and Bear Boy will want to follow me around the house hanging onto my trouser hem while I get on and do stuff.

If you are the same position I was last January, take that leap of faith and go through the surgery, yes its a long hard 3 months but things do get better, the body is an amazing repair machine.  Take hold of that life line to ensure you will still be here next January.