Friday, 30 March 2012

Desparate for life

I am so behind with info that I have received from friends abroad and home for trials and things, plus a lady who wishes anyone with meso to visit their centre of well being, I am sorry for not getting these posted yet but I am so absorbed in my pains at the moment.

The last month has been the worst I have had since surgery with morning pains, my mind is still trying to put them in boxes inside a dream or trying to create a survey where I tick them.  Strange how the mind works trying to get your body out of a situation.  I am now seriously worried that this is the start of the end and there is nothing I can do.  If I could go to Dr Abtin then the nodules that are touching these nerves could be blasted and then I wouldn't have this morning pain.  Why is everything so hard for us to have.  Does every other group of cancer sufferers have the same problems as those of us with meso?  No cure - no procedure!

I know that a few others are having a tough time too, Mave has been told to enjoy quality of life, but if she has pain how does she enjoy it?  I have been told a couple of times that there was nothing left but have pulled through now I feel there is nothing left yet every nerve in my body is trying to tell me something and I just don't know what.  The only thing I do know is that I do not want to die, and I certainly don't want to have a long drawn out painful death either.

Please find us a Knight in Shining Armour that comes in a pill to save us all

Tuesday, 27 March 2012

Getting NoWhere!!!!!

Why is it that we just can't get specialists to go that little bit further or try and convince them that something good can come of a treatment.  Debbie has tried her hardest to get Vogl's treatment going over here, I on the other hand want cyroablation to be used, (both for pallitive and debulking), and both of us WITHOUT SUCCESS

Yes I have been turned down by Harefield, I have no idea why but I don't think the cryoablation they do there is the same as Dr Abtin and his team do in UCLA.  So if that's the case why can't anyone allow Dr Abtin to come and show how they do cryablation and teach someone here, so that we, in the UK have this.  I know that cryablation works, it has taken out 6 or 7 of my tumours, they can't regrow, I know it can't kill the cancer but at least those 7 can't reproduce or cause pain.  Is it money?  Do those of us who are condemned to death only be allowed so many treatments?  Yet I have funded the majority of mine myself, even my radiotherapy I believe was paid for by the insurance company, so surely that's not it!

One hospital with the equipment is all I asked for, some radiologist would learn a new treatment and maybe just maybe a few people can be helped with both pain and quality of life, even just one other is better than none.

Looks like I don't need to worry about whether to take a year out and not do anything because I have nothing left to choose from.  Flying long haul now affects the air gap so its not like I can fly to UCLA and get rid of these little bastards that are growing. 

Yes I am annoyed

Sunday, 25 March 2012

Summer's Day

Thursday I came home from work, shattered, bad tempered and seriously ready to explode, Friday I woke up feeling out of sorts and thought Jan this is no good get yourself into some sort of work pattern that doesn't wear you out!!!  Hubby banned me from turning the computer on and maybe that day away from the screen has done me good.  The mist yesterday was beautiful and I am so pleased I went with the dogs over the fields.
The slow walk around with camera's over shoulders and dogs slowly sniffing around was a wonderful way to unwind.  We spent a couple of hours over there and by the time we came home the sun had burnt the mist away and we had (dare I say it) sun and warmth.  We pulled out the chairs, dusted them down, and relaxed for 3 hours.  Well I read a book on CS5.5 photoshop and still felt no wiser!
Today the mist had lifted but we took our camera's, a floor mat and off we all went and did the same thing again today.  Only this time we spent 3 hours, stopping and sitting down, hubby waiting for birds to fly across, there is a family of buzzards somewhere and we keep seeing them fly across now and then.  The nicest thing today was the deer, I think they heard before saw us and I caught one with my camera but it was too far away for the damn lens I had!
Deer running

I have had some info on 2 treatments that I must post the links to and 2 pieces of info on 2 brave mesothelionians doing their spot on TV.  I will try and work out how to post the links and get them loaded tomorrow, today my brain is still in relaxation mood and off mesothelioma mode.

I still haven't done my questions for the research centre or said I will take part, my scans still haven't arrived so I can't forward them on the Harefield.  Why does everything take so long, if it was life or death or I would be dead by now.

My head is aching so calling it a night and going to collapse with a headache pill on the sofa.  Such a wonderful weekend, sad to think its Monday tomorrow.

Sunday, 18 March 2012

On the Up

Mother's Day, due to mam dying last March I hadn't realised it was here.  I had intended to visit the grave but the way I have been the last few days I didn't think it would be a good idea, plus my mam isn't in a grave, she never visited it so why would she be there?

The dogs gave me their card this morning and allowed us both a lie in, kind of, hubby got up at 7 to open the doors so they could come in and out as they liked. 

I know when I have my down and aching days that they will go and to be honest I should know they will but when you are in the midst of them you are worried that they won't go and I didn't make the most of the time before they arrived.  I know that tomorrow I will go back to normal and resume my work ethics life style, until my body can't take the pressure and my mind is on meso overload again.

I have to make my mind up about this trial but emotionally I haven't sat down with a clear head to think of the questions.  I have looked at other MEK trials and the results haven't been bad but not good either.  I guess it doesn't help that it isn't pointed at meso specifically either.   Having this stomach problem of excessive bile doesn't make me happy about drugs that will make me think I have hundreds of sores inside my stomach and someone is pouring vinegar over them, the pain from that is unbearable and this is my one and only worry.  Not bad considering some of the other side effects are fluid retention, rashes, eye problems and that's just for starters.

The weather was kind today so I went over the woods and thoroughly enjoyed our 90 minute walk with the mutts.  Bear has come back limping and I wish there was a way we could make his back leg stronger but I can't put him through breaking his knee and having them turn it round in the hope it would fix the problem.

Lexi I have to say looks a lot better but she has the biggest pile hanging out that I have ever seen, the vets won't touch it due to her other problem but I wish it could be solved, it can't be comfortable for her everytime she sits!

It has been 3 years since surgery and I just don't know where all that time has gone, I wonder what my life would have been like since 04 if it hadn't been meso but endo?  Would I have taken as many holidays and done the same as we have done but without pain, or would I have just worked and worked, the one thing I do know it would have been nice to have a life without pain and the worry of dying.  I guess when we get in our 80's we start waiting for God but not when we are younger. I remember my mam saying she wished her time would come over the last year of her life.

To those facing a week of treatment I truly wish it would be easy for you, for those in remission may God let you stay there and for those waiting for scan results please let them be good.  We need good news to keep us positive and I hope I can get my positive levels back full instead of three quarters.

At least the summer is on its way ...

Saturday, 17 March 2012

Time to think

Having had a busy Monday to Wednesday and not much accomplished I was expecting getting somewhere on Friday as I was at the Bobby Robson Cancer Clinic on Thursday.  To be honest I didn't know what to expect on Thursday, I guess I thought there would be several other people invited for us to listen to a presentation of the new trial.

We were met by a research nurse who sat us in the lounge, Gary kept his eyes down as chemo was being admitted to several people. We were taken into a quiet room where another nurse explained what the trial was about

Unlike the Adam's trial there wasn't 60 pages of information explaining why it was sponsored, what it was actually targeting etc.  We were given a 4 page hand out that really doesn't explain that much.  I can tell you that 20 healthy volunteers have tried the drug and a couple had severe rashes on their faces, neck and shoulders.  Upset stomachs and nausea were also side effects. 

I just don't know what to think or what to do, I am slow growing with new area's at the moment but yesterday I felt terrible, whether its coming down from working hard, receiving the results, knowing that my life isn't how it should go I don't know but I wasn't myself at all.  To add insult to injury my breathlessness was painful too, how can being breathless be painful?  In some ways I just wish it was all over but thankfully this is just a passing thought.  I just don't want to feel worse, my stomach is back playing up so have once again started the sulfcrate but I don't really think this does anything for the excessive bile.

I know we all go through days like this and I am sure by Monday I will be back to my normal self.  I just can't understand how anyone who is healthy would want to try a drug that can do you harm?  Thankfully there are people out there but still they deserve an award.

Oh well, Saturday night is here and I wish I could hide my head in the Sand or run away to somewhere where I don't have mesothelioma days!

Sunday, 11 March 2012

Not understanding Meso at all

Friday I went to see Dr Hughes to discuss the Scan and update him on whether I had spoken to the Trial team.  I had sent him the emailed scan results, which in terms of reporting were short and not so sweet.  I had also asked about staging as in the UK we really don't do it that much.

Before surgery they had hesitated a guess at T3N, I understand it if had been T3M then surgery would have been out of the question.  I also discovered on Friday that the meso seems to be growing inside the lung, namely what they called intraparenchymal nodules.  I didn't know this could happen but this could explain the breathlessness that I am now noticing more and more, together with the heavy weight in my chest. 

The weather today was like 2011's summer days, we had our family walk in the fields both of us took our camera's, hubby looking out for birds and me snapping away at the dogs.  I just missed a Deer as it ran through the wood but we were more worried that the dogs saw it and gave chase.

It was wonderful to come back, pull out the sun loungers and spend an afternoon in the garden reading and relaxing.  My how the sun makes you feel good.

I am starting to worry that I won't be around next year and now with the news of nodules inside the lung it has really kept me awake at night.  Do they grow faster inside, I doubt they can be removed and it is the first time I have ever seen them mentioned on a scan.  I hope I will get some more information on this when I hear back from Dr Owens.

I am also due to see the trial nurse on Thursday, for some reason I thought that trials were just tablets and not chemotherapy, something hubby said yesterday about a trial taking place with cistplatin and I thought oh no not chemo.  I guess I will have to wait and see.

I am also beating myself up for smoking again and now with this result I feel it is my fault that the meso is inside the lung.  No one will ever be able to say for sure yes or no and I know that smoking is a killer.  Another choice I made and in this case a terrible one. 

I heard from Mrs Bradshaw this week, she lost her husband a year ago and is still promoting mesothelioma.  It is hard for our partners to continue with out us but to carry on working with those affected with this disease must bring the loss home everyday.  Today is 1 year since I lost my mam and I still miss her, how anyone can cope with the loss of a soul mate I could not even contemplate.

Time to wrap this blog up for the night, hopefully I will sleep better to night and get some decent much needed sleep. 

Tuesday, 6 March 2012

Scan Result

Just got the report and it is good and a little bad.  Progressive growth but slow on previous noted recurrence.  Unfortunately the blighter has created another tumour in the right lung and a few new ones in the left.  No sizes were given so will wait to receive a copy and do a little measuring myself.

I must be the only person who doesn't know what staging I have been throughout this journey.  When I visit my oncologist next week I am going to try and find out what I was marked down as, if at all, after surgery in 04, before surgery in 09 and now.  I would think now I am a T1 if that but it would be interesting to know about 09.  I know when I look back at the photo's it looks a lot but that question remains could I have held back.  When a surgeon tells you that maybe in 4 months you won't be around, and he is a good surgeon, you have to go with their knowledge and to be fair I did feel rotten at the time.  Also UCLA told me the same in August and November, that without surgery I didn't really have long.

When you look back things don't look as bad as they were at the time.  Like chemo I can't remember being as ill with it, until I read what everyone else is going through, then the memories sometimes come back. 

Well back doing my paperwork

I hope Lyn has better results !!! Come on Lyn you can do it. 

I hope whoever else is waiting gets stable rather than slow.

Sunday, 4 March 2012

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.