Debbie's Fund

Although I don't mean to be so out of touch it was a shock to read that Debbie was back heading to Germany for another round of treatment.  What is even more worrying is the Gall Bladder. 

When the tumours were back in 07 I  was told it was probably the Gall Bladder and yes I did have some stones but when I awoke from the surgery I was having the same pains (a full out heart session).  I just hope and pray that it is gall stones for Debbie and not the meso in the heart sac.  Let's face it I had had scans and they couldn't detect it or they didn't see it (it isn't an easy area to read).

On a good note I am pleased that she has raised enough money for the treatment and hopefully the fund will continue to grow to help towards others who run a little short.  No one knows what treatment does actually work but having hope is a key factor to keeping going. 

I would ask anyone though, who is going to Germany for treatment to ask their oncologist here to give them a kidney check to ensure they can cope with the toxicity of chemo.  We take everything for granted that who we see will do what is necessary but it isn't always the case.

Looking forward to Saturday and Helen and Barry are calling in on their way home after Take That at Sunderland.  Will be lovely to catch up again and also pick their memories about what Claire Cameron had to say about the Journey of Life. 

I haven't heard back from Andy Hughes yet regarding all the research I gave him but I guess there is no hurry as yet.  At least if I think that maybe my friend won't want to grow.

The clock is ticking so had better get a move on and go to work.

Mesothelioma and life

I heard today that another brave person has lost her life to this cancer.  When you think you are safe and have recovered from treatment it seems to come and bite you in the arse.  It seems the routine is treatment, recovery, treatment, recovery.  Some people are lucky and aren't affected by it for years yet others it just doesn't want to give up.

 I have tried my hardest not to think about my friend this week, I thought I had actually put a few lbs on as well only to be so disappointed when hubby brought the scales into the bathroom this morning and I stood on them.  Instead I have lost another 2 lbs.  I was sure I had hit the 9 stone mark or is it because I have finally bought some jeans that actually fit!

All in all I do feel better, I have tried to ignore the morning body blues and pushed myself into spuring myself on.  It seems that if you don't think about the cancer someone else always brings it up.  How can we escape from the knowledge that we have it when others keep asking you.  Iknow I said I felt like hiding my head in the sand and I still feel like that.  I don't need to arrange my scan till June and then I guess I have the soul searching to do.  I can only hope and pray that those pin heads are stable and the new nodes in the right lung aren't dangerous. 

Dr Abtin not only has a fan with me but also with Linda who has just lost her sister.  Wish we could get him here and do the business.  Much like Debbie wishes she could get Prof Vogl to do his work here.  Strange but after everything I have been through I don't think I could have someone feed a tube up my main vein from the groin to my lung.  I also heard from Cher, she is flying out from Oz to Germany again, staying 6 days to get one treatment.  The guts that lady has flying that distance for treatment is outstanding, I think for miles travelled Cher must win hands down.  All we can do is hope and pray that it works and keeps on working for her.

Debbie is also having to revisit the route of Prof Vogl and I would ask you to visit her blog - support is an amazing thing.

I have finally downloaded my camera and here is a picture of Helen and I having lunch in LA, Helen looks so well I am so jealous.

Looking forward to seeing them in May when they come to Sunderland for Take That.

Time to log off, dinner is out and yorkshires are getting cold.

Jan

Glitter Ball

Having taken weeks to get the new tablets in my system (still only on 2 a day ... just can't seem to pluck up the courage for the 3rd one) I know that the pain relief seems to outweigh the side effects but could it also be that I am recovering normally?

I don't feel myself, could bite someones head off for no reason so am constantly on my guard not to get slightly miffed with anyone... thing is I'm finding you don't need to be miffed to feel like biting anyone's head off!  Paradox in itself that sentence, so I daren't take no 3, my God I could become a time bomb!

So what's happened over the last few weeks, have been full on  at work, that's once I've taken an hour and a half on a morning to feel like going, then its in the deep end, but concentration is failing badly ..could be the tablets.... normally I would have between 3 and 4 jobs going at once on my desk and computer I seem to find it hard to deal with one, but shouldn't complain as I still work and it nearly meets what normality is!

For the first time in months I had two events on for one day  (yesterday), one the Point to Point for South Durham (sponsor table etc) then Mick Knighton's Mesothelioma Glitter Ball.  I didn't dare sit still from coming in from the Point to Point to getting picked up at 7 by Lorraine for the Ball.  The Assemble Rooms at Newcastle were done out with such glamour and the place was heaving.  I think now there are more sponsors and guests than ever before and probably less of us cancer lot, but that's what brings the money in and helps the charity raise funds.

Chris announced that the charity has reached £1,015,000 since starting in back in 02, that for 2 women and the amount of awareness that has come to the forefront is amazing.  Chris has probably done more for mesothelioma than any other person or organisation.  The good thing with the MKMRF is the money all goes to research, no fancy offices or cars, no high expense bills - all to the cause.  Hats off to Chris and Ann for achieving the goals they aimed to fulfill.

Went to see Andy Hughes (Oncologist) Monday, will be doing nothing until my scan in June.  Decisions will then have to be made.  He actually was on about trials and I left him all the material I have recently gathered for him to read through.  He said he would facilitate any introductions I may need should I go that way.  I said I really needed someone to bounce ideas around with.  The problem is am I 3rd line or 1st line where treatment is concerned. One thing that we both agreed on was that I could never take Alimta again, it was the choice of do you die from the Alimta or Meso and in my case it would be the Alimta!  Have also been back in touch with Dr Gilliams at the London Clinic and should I need to I can still have thermal ablation on any singular tumours that are under 3cm but over .5.  So if one of my 15 pin heads decides to grow individually then bye bye with ablation.   At least its in England, no 11 plus hour flights and hotels far away, its one night in hospital as its under a general. 

The headaches seemed to have cleared again since the cryo - so hopefully the cancer has retaliated for a while, although my kidney area has bad patches of pain that last for 2 hours at a time.  Have also been having sharp hot stabbing pains in my shoulder blade, especially near my scar and left breast ... hope its nothing but you never know.  One really good thing I can't feel that pea in my back anymore when I lie flat and my breast is still not causing any pain when it touches my rib .. long my that pain stay gone for good.

Met up with Chris Scott at the Ball, I was diagnosed a week before him.  He was looking the best I have seen him in years.  Since 2004 he has had 2 lots of chemo cycles, suffers no pain at all, same as Colin no pain.  I am still wondering what extent of meso they had on diagnosis.  When I think back to the 2 curtains hanging off my pleura and the 20 plus smaller bits Andy Owens removed I guess I am lucky to still be here.  It seems a lot more people are being diagnosed a lot earlier (a fine thickening and maybe a nodule or two sticking out). 

My Oncologist said I seem to have done treatments in the totally wrong order.  Maybe I should have had chemo straight after surgery again - but would it have mattered?  That's back to the problem with mesothelioma - it doesn't do the same in anyone person and no one can tell you which way you should go.  Yes we have the standard on diagnosis - either surgery or chemo.  Most go for chemo then its wait and see, what else is there we can do.  Surgery is a large undertaking if you have only a fine thickening, but then it hasn't got to grips with the lung so to speak so maybe surgery should come first then chemo second.  In a way that is probably how mine went as Andy Owens just about stripped my pleura the first operation in 2004.

After having such a busy day yesterday I have spent all day lazing around watching tv.  I haven't had much energy and any energy has been zapped  trying to brush our Bear.  I feel like I have wasted a day off, but then what are days off for but to sit around and do nothing.

I have missed a few weeks but my moods swings have become apparent even to me and its best not to write when feeling irritable. Sometimes this cancer leaves you feeling its you against the medical profession and they don't listen, or its you against family and friends and they keep pushing and pushing with ways to cure you, or some times you just feel like putting your head in the sand and ignoring the whole business.  Work has kept me occupied and more so these last few weeks because I really want to crawl into a hole and forget mesothelioma.  The wish to wake up without hurting or feeling yak is so deep now that I hate going to bed because I know in the morning its bad, but then the morning has gone and your occupied with other things.  Frustration at not being able to do stuff bugs me as well.  Why should going out be so tiring, why can't I be bothered to do anything when I finish work.  Come to 4pm and I want to close my eyes, but I won't let myself do it.  For no reason at all one morning last week I felt like going into my tablet cupboard and throwing them all in the bin - I know that's the Gaberpentin causing those irrational thoughts - but that's how I felt.

Sunday Roast is in so guess I had better get myself in the kitchen, poor hubby has been the sole chef for the last 6 months, I just can't be chewed with it!  I have also managed to hold my weight at 8st 10, so I finally went out and bought some new jeans - 4 pairs to be exact - watch  me start piling the weight on so they don't fit!  That was last Saturday and I was worn out last Sunday too!

Enjoy your dinners and no doubt I will write a load of dribble next week
Jan

Coming along after Cryo

It's been a couple of hard weeks for me, I started Gaberpentine to help ease the nerve pain, infact part of me wishes I had tried it again earlier as some of my other aches have eased, but the other part of me isn't getting use to it at all. 

On a morning each joint in my body aches, I am either over tired or can't sleep, irritable, headaches and that's just on 2 tablets a day.  I thought if I waited until one settled down before lifting I would be better off, when the symptoms settled after 2 weeks  I lifted them, only to find the symptoms much worse.  My brother said I should try and get onto the 3rd one in the allotted time scale of 3 days but its been over a week and I am still struggling on 2.  He said he went through the same and it was months before he settled down with them, and if you miss one you know about it.  I hate having to take tablets at the best of times so I just don't know how he does it.

I have finally managed to get an appointment with the oncologist so hopefully we will be able to have a good chat and come up with a plan for the future.  The USA are pushing Interferon as a daily injection that kicks the system into gear and makes it fight along with starving the nasty cancer.  I still don't feel like I can face chemo yet but as I am unsure whether the cancer has continued growing since April I hope that's a decision I don't have to make until the next scan in June.  So if June looks stable then no chemo, but if not then I will have to take it on the chin and start chemo asap, problem is which one? 

There is also the Adam's trial but I don't think I am eligible because of having previous treatments.

To be honest I still keep having flashbacks to my hallucinations in LA, I don't know why medication and me don't go together but we don't.  I have been lucky that the MST doesn't cause me any problems, but I think in the early days it did but the pain made me stick with it, but that's way back in 2004.

Bear looks to have developed wet ecemza so we are trying to get a vet's appointment this morning.  In our household if anything goes wrong it is always a bank holiday weekend.  Just hope we can get the little fellow in.  I would hate the stuff spreads, but he has it in an unusual place, just left of his mouth.  I thought he had been eating pooh and I was trying to comb it out because it was all knotted, I ended up having to pin him down and then saw this bright patch of red skin. 

Open day for houses today, so had better get myself moving, I doubt anyone will come as we haven't furnished them out, don't try won't know.

Hope you enjoyed the royal wedding, must admit I had a few tears in my eyes ... I wish them all the happiness in the world.

Recovery from Ablation

How wonderful it was to arrive through the front door of our own home and be knocked over by an overgrown Newfoundland.  The flight was hard going as my left boob wasn't pleasant and I am sure other passengers thought I had a thing for it as I had my hand underneath it most of the way home.

The tumours were a little larger than I expected and when I read the report I was surprised that the probes had gone in some 10cm into my chest .. no wonder I hurt!  In my body build that's half way through.  I have been resting since returning home.  I drove to the doctors last Tuesday and realised that was a bad idea as the pain in my left side wasn't nice and the driving seemed to aggravate it that little bit more.  As it is when I put my left arm by my side I feel that I have inflammation in my chest and my arm buckles out over.

It was great to meet Helen and Barry, they were out in LA for a wedding and also took the opportunity to see a Cancer Consultant out there.  Hopefully on there return they will give me a good run down of what was proposed.

I promised hubby and myself the night before the procedure that I would be taking time off treatment, at least 3 months before I think about starting chemo again.  At the end of the day the procedure was evasive and your body can only take so much damage and interference at any one time.  I do wish that we could get cryo started here.  I took the opportunity about asking whether Thermal would do the same and yes it will but could damage and be more painful than the freezing.  But after all the carry on with finance in the States I will be looking up Prof Lee's again in London to see if they can take out any further tumours.  I will, of course, still send my scans out to Dr Abtin as he really does care.  He did mention that I have three nodules on the right lung, one I knew about but if I have another two that have appeared I now think they may be more than just nodules, but I really hope it isn't the meso.

As for how my lung looks now I will have to wait for 3 months for a scan to see how the lung has settled and if the tumours have indeed gone.  Unfortunately I have had to resort to further pain treatments and have started Gabapentin, although I am only taking one tablet a day at the moment, this needs to be lifted to 3 but I am going to take my time.  Last time I was on them hubby was worried for his life....

It's the Mick Knighton Ball in May and I will certainly be attending.  It will be good to catch up with a few faces and hopefully meet some new ones.  We are making it a girls night, which will be nice for a change.

Finally my emotional state has sorted itself out and I feel back to normal.  I frightened myself being so upset about treatments etc.  On top of which I dropped more weight in the States .. how you may ask when the portions are so big .. and that's the reason, far to much food on the plate!

I know I knock the NHS for lacking in providing doctors that care, and money where it is needed, but after been back in the States it makes you realise how lucky we are that we do have a health system that tries to help.  I was speaking to a meso friend today and they were telling me what a fantastic set up they have down in Sheffield.  A good oncologist who works alongside their own GP, everyone is kept in the loop and any problems talked over as a team.  Why can't we have that country wide?

I am still waiting to see my oncologist, yes I know I have been in the States but I emailed as soon as I was back to arrange an appointment.  I need some help and advice on what I should be doing, how to build up some body mass for the next round of staying ahead of this cancer.

If we don't stay one step ahead we all know what can happen and lets face it meso doesn't wait for anyone.  I don't know about you but sometimes this just doesn't feel real.  On a normal day you do forget you have an ugly cancer encroaching your lung and sapping anyway your very existence, but on a bad day it can get you down.  After the emotional turmoil I have just been through I think I have never really given myself that time to fully evaluate exactly what I do.  Since 2004 I have gone through treatments, gone through scans, gone through more treatments, worried about dying, come through the surgery and thought that was the end of it.  Suddenly the meso is back in your face and its back to treatments.  Will the chemo work this next time, and if so, for how long will it hold it back.  How long can the growth be controlled.  I know that I am 'luckier' than some as I am still here some 11 years after the first really bad signs appeared, but I'm sorry 11 years isn't long enough .. 

I realised another thing when over the pond, I need to take better care of my body, I keep expecting it to bounce back as if I have had a finger nail filed instead of the devastation I have put my body and cells through.  I owe my body an apology for expecting too much because my brain and emotions expect more.   I also realised that everyone around you expects more.  Your family want you to keep taking everything going, your friends are the same, but sometimes you just need to say ' stop I need some space and time from this ', and that's something I have never said, but now I am thinking it.  If the meso stays slow growing over the next few months then why not enjoy the sunshine and life, why rush into another exhausting round of chemo or whatever else you can find.  You see I am in a mad circle, one minute I want to stay ahead, the next I want a break from it all. 

On that note I will close.  For once I want to hide my head in the sand and let someone else make decisions .. problem is who!!

Cryoablated and home

I know that when I get home I will probably want to write a novel about what happened during my recent visit to the USA.  I was going to wait until I got home to start but as the airport has a computer and I have several hours to spare I thought I may as well start now.  During the last 10 days I have been through seer panic attacks, highs and lows but at least I am returning with less cancer cells than when I arrived.

I also didn't realise how the death of my mam had affected me until the day we were flying from London out here.  The adrenaline that cruised through my veins was terrifying and I was unable to settle.  When we boarded the plane I partly wanted to step straight off.  We arrived here on the Sunday and I had the worst sore throat I had had in years, my nose was blocked and I feared a chest infection taking over.  To make matters worse the weather wasn't that great either so the story I had told myself about it being a holiday went straight out of the window.

The Monday morning Gary and I went down for Breakfast but I just couldn't settle, my insides were in turmoil and I worried about whether I was doing the right thing.  I felt like if I turned around and came home I would be letting everyone down, was it me pushing myself for treatment or was it the fact that everyone around me seems to expect me to keep going and if one thing fails then it is my duty to do something else.  We went over the UCLA and met Fereidoun.  Instead of spending time closed in his office/reading room we went out into the court yard and had a coffee.  I told him I was nervous and full of cold, he said I had nothing to be nervous about and over the last 12 months they had done over 55 procedures and had managed to get the sedation etc right.  It was great to see him again and he also mentioned wanting me to meet the famous Dr Cameron.  We decided to go and pay for the treatment then rather than have something go wrong in the morning, I had settled myself down and started to feel a whole load better. 

We went down to the reception area and said we were there to pay for the treatment the next day, she pulled up our file and didn't look at us, instead she directed us to another department in another building on the complex.  On arriving at this other building we were told that we owed thousands of dollars from previous years and that if we didn't pay we couldn't get tomorrow's treatment.  After several hours of phone calls between several different offices they agreed to honour the price quoted and that my treatment on Tuesday could go ahead.  They quoted something like the procedure should cost us $50,000 which is absolutely bizaar.

That night I was again an emotional mess, never have I felt like this, I couldn't sleep and just wanted someone to say this is the right decision, you will feel better, it will work and hey you are losing billions of cancer cells.  I was worried about the thickening, and decided that I will defer any treatment, after all this is the 9th line of treatment in less than 6 years and although surgery was 2 years ago I need a break.  The pain hasn't got better and what am I doing with my life, chasing down the meso instead of enjoying the time I have.  That was my decision on Monday night - no more for a long time......

Tuesday we arrived about 5.30 and checked in.  The nurse was marvellous and needles went in without any problems.  I was wheeled down for the procedure at 7.45 and had my first CT scan by 8.  Fereidoun said he had suffered at the hands of the admin department and that he was not allowed to treat me further unless I went through International (a way to make more money for the hospital - rather than treat a patient) so instead of doing his proposed plan of one procedure every 5 days he was going to do 4 tumours all at once. 

His team started by numbing my left breast, the needle for that was painful, having lost so much weight he was hitting bits of grizzle and of course rubbery muscle.  I was fine though and had no problems with the sedation or the probes.  At 10 they were turning me for the ones into my  back, this is where I went off the deep end.  I started having crazy hallucinations about time and eternity and that life was being replayed like groundhog day but it was around a 10 minute event that was speeding up everytime it replayed in my head.  I think (Fereidoun is to polite and confidential to tell me what I actually did) I was swearing and calling everyone F*** B**tards and that they had to stop, I also remember kicking my legs behind me trying to pull out one of the probes (been there before!). 

I can't remember the first time they tried to bring me back from the drugs but the second time Fereidoun kept asking me if I knew who he was ... I couldn't get warm and I wanted this nightmare to end.  I remember begging the nurse to take away whatever it was they had put into me as it was driving me mad.  I was told later that I didn't know who anyone was and I was in a really bad way.  They had to push the limit on the drugs to calm me down and then reverse them asap to get them out of my system ... cold turkey big way comes to mind. 

I was finally admitted onto the recovery ward (guess I was still swearing for quite a while) and a nurse called George took charge of me.  He tried to ask how I felt but I couldn't verbalise the feelings  very well, I said it was like adrenaline but 30 times worse pushing through the body.  He told me (in no uncertain terms and in the voice of a school teacher) to lie down and sleep.  I awoke around 3pm and felt warm.  They had put socks on my toes to help keep me warm and every 20 minutes they had been changing the blankets to warm ones.  Its amazing they heat all the covers up in a big oven! 

Gary was finally allowed to join me and I just wanted to sleep, but this was a problem as my bp was crashing, I was unable to get it over 80 and at some points it had been 72 over 53 I believe.  The Xrays showed that no damage had been done to the lung but I still wasn't allowed any water, my mouth was dry then I remembered being sick and bringing up blood, I did the same again before going back to sleep.  I was in and out of consciousness until about 6pm and had another xray.  The nurse fed me water, an ice lolly and a yogurt, all with the hope of getting me going.  Blood pressure did reach 103 at one point but then dipped back into the 90's yet again.  At 7.30 Fereidoun came to tell me that the procedure had been a great success, I was sheepish and apologised for any terrible behaviour that I may have displayed, he laughed it off, but I am still embarrassed.  He released us from hospital but said anything happens to check straight into A&E.  We arrived back at the hotel room and I went to bed.

Enough  for now, I will carry on when I get home.  I am still not sure where my feelings are and in what direction I want to go all I know for sure is that I can't wait to step through our own front door and collapse on the sofa with the mutts.  Just wish the flight didn't take so long and combine that with airport time and connections we will be travelling for around 18 hours!  Ever wish we could say "beam me up scottie"

A lost meso warrior at the moment