Thank God for GP's who you get on with. I have managed to ascertain that I have pulmonary hypertension on the right side of my heart, brought about by lung problems .. at least I know I'm not going to drop dead from a heart attack in the near future.
I did complain about the lack of communication I had from the chest specialist so my Doc is going to speak to the top man and see if things can be sorted out more easily in future. I did ask to see another specialist but have promised my GP I will hold off until after my next hospital appointment (August), some 4 weeks after my next scheduled CT Scan. I haven't heard what will happen about my heart apart from an echo graph again in August, so presume nothing but watching and waiting is the call of the day or nothing can be done. My temp is still floating around 35.5 but I must admit I am feeling 100% better than I did this time last week.
I have also started taking paracetamol morning and night along with my mst and have noticed a remarkable change in my rib pain, for the better I must add. I am only taking one tablet so am thinking of taking it up to two morning and night. Just getting up without that concrete\iron corset on makes such a difference.
I have heard that a friend who went to see Prof V with small cell lung cancer isn't doing too well at the moment. Although his treatment prolonged her life she has suffered with some damage to her windpipe but I'm not sure how, hopefully I will have some further news after Meso day as her brother will be there.
I have been reflecting on the problems I have had since our holiday and I do think that I have caused the air leak by flying, probably pulling the lung from the chest wall a little. It does make sense, the low temperature was always an indication that my pleurisy was starting, so maybe I have some fluid there too. Hopefully my GP will clear this up with Dr Abbassi in his letter. I left him Dr Abtin's email to digest about my condition and he along with myself, was pleased that the cancer hot spots are dormant at the moment and long may they stay that way.
Surgery might have been tough on my body but it was worth doing it, to still be here alive and able to walk the dogs out in the fields, go to work, visit friends etc I have again started to take these things for granted and plan on doing this for at least another 10 years.
I said to Lorraine the other day that my body had been through hell long before I had surgery, I had had endo for years which causes your body to fight against itself, then to have meso. Anyone who has been healthy until this cancer comes to life probably flies through surgery and suffers much less on the other side. I had had an awful lot of surgery, even when I had cancer, so I am sure this makes the body weaker. So please if you are considering surgery don't be put off by my moans about pain, you could be one that flies through and is back to normal without pain in 3 months .. a walk in the park ...
On that note I am going to crash on the sofa and watch something other than football!
Saturday, 19 June 2010
I finally had a chance to catch up with Dr F Abtin from UCLA on Friday. After he reviewed my latest scan and gave me his comments I was relieved. He also believes the growth pattern has stabilised, although not meso free the nodules he is concerned about have stayed stable and at present he doesn't want to rock the boat by cryoblating them in case they set the meso off. He did note that my air leak has enlarged and wonders if I do have a new leak, if this is so then maybe that is what is causing me to feel so crap at present as it could be caused by a bug.
I did say I am so pleased that I won't be seeing you but obviously because I don't need treatment. I told him that my specialist say's he's worried about radiation poisoning but my answer back was only if I was on an Xray machine or CT Scan for 7 hours a day, and everyday for a week would that be a real concern and the effects would show in some 15 years. But having a scan every 3 months isn't going to make any difference whatsoever. So armed with another comment for the next time I need to battle.
I know that I really shouldn't moan about pain, after all I am still here, and I do do most of the stuff that I enjoy, but I guess I also talk about the pain alot because a) others out there may have the same and not know if its normal or not b) I need to release this grumpiness somewhere and c) I'm a woman after all!
Anyway I was talking about cryo, I asked Dr Abtin how it was going in UCLA and he tells me they are doing around 100 patients a year, they are still waiting to have a full findings report published which will then make it standard practice. It seems the insurance companies are pushing hard for it because a lot of patients want the treatment but can't get it through insurance and have to pay themselves. I thought this was the only country that trials and results took so long.
I also did some recent research to see about cryo and found a lovely story about a lady called Doleros, unfortunately she died in 09. She had had surgery followed by 25 radiotherapy treatments a course of Alimta then cryo. Having had surgery and 3 radiotherapy treatments followed by nothing I hope I can still keep going!
I also heard from John Edwards and he was telling me of a patient that had surgery 3 years ago and is having Alimta for the first time, that is another good record. I still wonder what would have happened if I had had surgery back in 2007 instead of taking Alimta again, the cancer would have been a lot less and maybe the recovery a lot faster. Even John said we were lucky, he that he could remove it all, and me because it came out. I thank my lucky stars that I had my cryo before it broke through my chest walls otherwise I wouldn't be here telling you my woes on the world.
Action Day is coming up and it will be interesting to here what the new number of cases are per year and whether our life expectancy average has risen. You would think with the standard treatments of Surgery, chemo and radiotherapy together with the new technology we have for meso, our average should now be up from 3 months to a year to something like 1 yr to 18 months. The Doctors are recognising the symptoms faster and getting on the case that much sooner. Yet still manage to let some of us down.
Don't forget to support your local Action Day event, numbers attending show we are interested and want more done. At least for me this year it will be a quiet one, no TV interviews, newspaper articles or speeches.
Yet in my heart of hearts I feel that we are still in the stoneage regarding treatments for this disease, we hear about new treatments but they never come to life or even the way forward with surgery is hummed and harred by doctors.
This week I was off colour again and spent Thursday morning back in bed missing out on all that beautiful sunshine, I am keeping my fingers crossed that this could be a bug because just as my operational pains are starting to get there this new one is pushing me to distraction. Or is it the my poor brain can't deal with all the pains at once. But however I feel I am still pleased to be on this earth, I would just like to be pain free and when I go to bed be able to lie comfortably and fall into a nice deep sleep, but that ain't going to happen so I am trying to re-program my brain to get real and realise that this is as good as my body will get and any thing better is a bonus. Can't promise I won't moan in the future but will give it a shot.
On that note I hope you aren't in too much pain and meso is being kind to you too. If you're at war I hope the battle is going your way, keep positive and do me another favour, ask your specialists questions. The only way to stay ahead of the meso is to know everything you can about your disease. Research everything, if you have odd tumours instead of wide spread thickening consider the other options of new technology, if you have wide spread thickening consider surgery before the stuff spreads outwards and its too late. Yes surgery is a long recovery road but you can still do most things (after 6 weeks) pain in one maybe nothing to another. Put your body above what your specialist says, they don't know everything and sometimes they don't even tell you that they don't have any answers and sometimes they really aren't interested.
This is your fight, it's your life and if you won't do battle no one else will do it for you. .. It's fact.....
Battling on as ever
Sunday, 13 June 2010
Having been wondering what is going on with my chest and heart I was looking forward to the appointment with my specialist. Here I would gain understanding to what was happening and glean any advice forward. The only thing I gleaned is that we are still really out on our own. I waited some 3 hours to see him for a 10 minute mumbled meeting he had pretty much with himself.
I had sort of hoped that our Doc's were there to guide us through whatever choices we have to make or tell us what is or isn't working. The only thing I got out of the meeting was his concern I have too many scans. If I hadn't have been taken in to hospital I wouldn't have had too many scans, and as I pointed out, with meso having the reputation it has you would be mad not to get it checked every 3 months.
I am sure I have been on this soap box before, why let a surgeon work all those hours to fight for our life, remove the bloody cancer and then our chest doc's just let it come back! I have no idea whether I am still taking steroids, who is looking at this pressure in my heart, and to cap it all how my own Doc tells me I have a nodule growing and this doc says nothing.
I hate to do it but I need a doc who is prepared to give those 10 minutes to me, to be bothered if my scan shows a growth or not. When I carry out my job I give it my full attention, why should doc's overlook the care of their patients any different? I know they aren't allotted a decent time with a patient (15 minutes), you bring in a new case that takes an hour, then they are 45 minutes late on the first appointments. They have a voice, shout up! Tell your bosses you are over submitted, but please don't take it away from the care and advice us meso people need.
I have no idea what is going on, if Dr Abtin says I have a growth I will just go, he isn't charging for looking at my scans, hasn't made a penny out of me and at least can be bothered to look and ask and advise. Funny we all say we would hate the USA way of medicine but at least they give you something to work with.
I really wanted to stay within the realms of the care team that I am suppose to have, I was excited to have a team so I could refrain from worrying and enjoy my time .. well that's gone, I haven't stopped worrying and really would I really trust again? Without trust between doc and patient you haven't really got much have you?
What I find the strangest is that the surgeons seem to take more care and proactive action than the medical side who assess and decide your future. Debbie and I have pretty much taken our own care into our hands and hence I feel that is why we are still here today. Yes we need the Doctors but if they are unwilling to advise or point a way forward then you have to take control, it is your life anyway. As for me, I just wanted a break from it all, so back in the saddle to see what's going on and hopefully survive another round of what is coming my way.
Prays and thoughts to Hilary and her family for Friday at 12.30.
Thursday, 3 June 2010
I know I don't know how I dare complain when everyone is going through such a tough time but since that episode that put me in hospital for a night my heart has been acting up. Maybe it is because I know the pointer on the ECG went down instead of up, and to be honest I didn't really take the Doc that seriously on the ward when she said she wasn't happy for me to leave but then it was a weekend and nothing gets done in hospitals over that period so she kindly let me go.
Yet over the past 3 weeks I have had this heaviness in my heart, strange really as my other pains seem to have stepped back while this one takes centre stage. My breathing has been fine, my heart area seems to hurt the most on a morning and by early evening it isn't as prominent but still there.
Have managed to make an appointment with my GP so maybe he will give some light to this, and of course I have an echo graph coming up next week .... I wonder if my downstroke will have become normal again.
I have had some good news today, Chris S has responded well to his second cycle of Alimta and has had shrinkage. Chris was diagnosed with me back in 2004 and with a little blip a few years ago where he had radiotherapy, this has been his only real treatment since 2004 when we first went on Alimta together. It is always uplifting to here things are going well.
I haven't heard from Hilary and am worried, I have text but at times like this I know she has more to do than email or text me back. I just hope a miracle has happened and her husband is gaining some strength and fighting this infection.
The sunshine is wonderful, although Bear has taken to lying in the kitchen across the threshold so getting in and out is near impossible, he is nearly as tall as me when he lifts onto his hind legs, can't believe this little puppy has become such a large dog in 8 months and he still has some growth to come. The only downside of the breed is his slobbering, it gets everywhere. Have tried teaching him to wipe his mouth but he thinks a towel is to play with and ends up playing tug of war. This morning he had me up at 5.40 I could hear him scratching at the door and when I came down he had removed quite a lot of plaster from the wall as well. Once he's awake he wants the whole household up then he goes off into a corner and goes back to sleep! I wonder how he will get on when he moves rooms again. I had hoped on giving him the free run of the house, we have tried several times, but he is up and down the stairs, barks at the bottom of the bed then flings himself ontop of us. I can't remember this with any of our other dogs, so we are leaving him in the kitchen at the moment, which is a cooler room as it doesn't get that much sun. But once the build is finished the new kitchen will be light and so will the utility room, I had hoped he would move out into the hall and what will become the office but as he likes removing plaster from the walls I don't think it will happen.
I had hoped on going to a new meso meeting which takes place in Washington but with the builders in and hubby at the dentist it proved not to be again this month. I hope Dan gives me the reminder again for the next one.
My CT Scans will finally be ready for collection tomorrow so then comes the nightmare of getting one sent off to Dr Abtin and then the wait to see what he makes of the changes. I only hope that he was wrong with the last one and the nodule he says has grown to 16mm isn't there or if it is it hasn't grown any further. I really am at the point of I don't know what to believe, especially after the Chest Doc in hospital said it was growing and what did I expect. There again on the phone this morning Chris reminded me that I am nearly 50 and in 04 and no one really thought I would get here, yet I still have a lot of living to do and will not be resting on my hunkers, to keep alive is to keep fighting.
Wish I could get my appetite to do that, my weight has dropped again, 8.12 now, seems even a sandwich fills me to bloated, thank God for lunchtime cereal. I have decided to try and get back into milk shakes, especially with it being summer, at least they are a meal with all that milk. No doubt some doctor somewhere will shake their heads and remind me to drink skimmed milk - not likely full bodied milk is the only one I like. Have also being checking my BP it is still around the 95\60 something else to chat about with the Doc as I am certainly not athletic.
Enough of my grumblings, I do often wonder if my rambling about pains etc actually puts another sufferer at ease, at least if they have the same problems then they know it is normal for the condition! There again I guess not that many have been through as much varied treatment, radiotherapy, cryoblation, chemotherapy and two lots of major surgery, obviously the last one being dramatic surgery. When you meet a new doctor they are so interested in the false heart sac, diaphragm and the thought that your lung and chest wall have been stripped, cleaned and you are still here to tell the tale.
On that note I will end the blog, thoughts go out to the circle and I hope all is well with you.
Don't forget the factor 30 or 50 on your drainsites!!
Tuesday, 1 June 2010
Over the start from creating this blog and the website I have become friendly with quite a lot of meso sufferers, which I affectionately call my meso circle, and I know that many of these people have created their own meso circles, which all helps to promote awareness of the cancer and the treatments we can have or what is experimental etc. Over this time you create a bond with each other and become virtual friends which I think is wonderful. Sometimes it may not be the sufferer who you become friendly with but their partner.
Last year I got to know Hilary, her husband is unfortunate enough to suffer from meso and over the year we have emailed and supported each other (as best you can on a keyboard). Last week Hilary gave me the bad news that her husband had yet again contacted a chest infection and oxygen was now a requirement at home. My heart was heavy at this news and this week his condition has taken a further knocking and at present he is spending time in a hospice. I find that when one of the meso circle is taken ill I feel it like an acute pain, why is this happening, isn't there something the Doctors can do etc. I know that we should get use to this but I just can't and it brings home the fact that we should be counting our blessings everyday for the time we are here.
I find it frustrating because there is nothing I can do that can help and I feel sad because I live so far away that I am unable to visit, it brings a heaviness to my heart that one of us is ill and we all know the risks involved when we do take ill. How a chest infection can lead to hospitalisation, how a scan result can mean another cycle of chemo.
Our partners battle through this illness with us, not only giving us support but love and encouragement, we show strength so as not to worry them but our loved ones can have a much harder emotional battle going on than we the sufferers have.
I guess I want you all to send a thought out to Hilary and her husband to let her know we are here routing for the both of them and wishing a miracle could take place.
I find it strange that it takes years and years for this cancer to come to life and in some cases like mine can take years of slow growing. So why does it suddenly change and accelerate in growth for no reason. All we can hope is that we are strong enough to fight it and hopefully have some form of treatment available for when this happens, but we all know that we don't have enough treatments out there. Once we get to the ill position we can't travel so Prof V or Dr Abtin don't come into the equation and perhaps its the same for the few treatments we do have like radiotherapy.
Which leads me back to seeding, please please if you have had a VAT or drains in your chest please please ask for radiotherapy, infact push for it. Specialists say there is no evidence that it helps prevent growth but I know quite a few people who didn't have it and have suffered with seeding, which then leads to other problems as well as the meso spreading.
As I close this blog please send your thoughts to Hilary and her husband and to your friends who are battling at this time.