Friday, 26 August 2011

Lumpy debate

This lump is causing some trials and tribulations.  I saw my onco who thinks it is seeding, I went back to the docs on Thursday and we didn't remove it.  The local surgeon had a feel as I was explaining that it could be meso.  The lump has attached itself to the muscle as well as the rib - he thinks, therefore removing it would need to be under a general.  My GP was a little disappointed because he is in the same vein of thought as I am, remove any cancer if at all possible but neither of us really had thought of  any further consequences last Friday. 

I am now waiting for a radiologist to see me and see what he thinks.  If we had a copy of the CT Scan that may have helped but things have changed in that area up here too.  My Doc can't request it, neither can my lung nurse so I had to fill in the forms and wait to see if they post it out. 

I want to thank Cliff for reminding me that we are all human and after what he has gone through I am humbled, there are a lot of people out there fighting this everyday and we all react differently to circumstances - thats what makes the human race unique, so thanks Amanda for reminding me of that too. 

On a good note I got in touch with a lady who went through surgery with me and she is doing great, no return, no pain and out living her life to the full.  The one thing that tells me over and over again is that this meso operates differently with every person it affects.  It is always good to hear the good stories because it does drive us on.

If my lump stays around I will have to find a name for it, maybe my friends brat!  On that cheery note better start thinking about going to work.
Thanks for the support guys, I really do appreciate it.

Tuesday, 23 August 2011

Meso Seeding?

I don't know why I was quite up about this lump, over the last couple of days it has felt worse and the antibotics are killing me.  I took yesterday off work as I just felt crap, my insides feel like they are being eaten away and the lump feels sore. 

I emailed a friend and took the advice of seeing my oncologist.  After having a discussion on the telephone he doesn't think its the lymph node but more like seeding from when I had cryo.  Around my walnut lump the soft tissue is extremely tender - I tend not to have a feel around.  My aim is hopefully it can be removed but maybe I will need radiotherapy to a) treat it all or b) after having it removed.

On Sunday I actually broke down in tears in the shower, something I hardly ever done, but I am scared and I am worn out from things going wrong.  How many battles do we have to keep fighting.  What with excessive bile that makes mornings rotten, my burning that has continually got worse and now to find that my last attempt at vapourising these tumours may have led to seeding in my left chest area.  I hope it isn't seeding but what else can it be.  My doc has reduced the strength of the antibotics down to 250 instead of 500's, and that has made a difference to how I feel overall, but it isn't helping the lump.

I read somewhere today that seeding is extremely painful, my lump and area is painful - so it isn't leaving much to my imagination is it.

After all these years I really feel that I am on the downhill battle, I know positive thinking brings positive outcome but I don't feel positive.  My world feels like it has turned upside down and I can't stop it.  Hubby doesn't understand how I feel.  In bed the other night he said how are you, I responded not very well, he goes why? Why does he think why?   We don't really discuss the meso, He is all there for support through doctors appointments etc but he doesn't really want to know how I feel, what pain I am in.  He once said he lives with it everyday so why talk about it.  Sometimes not talking about it makes the whole situation worse, not just for me but for him to.  How can he release pent up emotion if he doesn't discuss it?  Wives to husbands that have it are much more supportive than Husbands to wives that have it.  From all the reading and research I have done it seems that the wife does it all, in my case I have done it all.  He thinks giving me a hug makes everything alright, well he is really going to have to wake up to the fact now isn't he.

When I had the operation I asked him if he would gently touch over the scar to help mend the nerves, that never happened.  I have asked him various times to check my scar for lumps - because I can't see but sometimes feel them - he doesn't.  Because I have got on with things I think he thinks everything will be ok.  Right now I want to run away, do something different, not have to face meso. 

I want to go and sit in the sun somewhere, hubby was going to sort a long weekend out, still waiting for that too!  I don't mean to sound harsh or ungrateful because I'm not but just for once I need some support from him other than having a hug.  I know that men are different to us, they do bottle things up and never discuss them, or is it they have an ability just to ignore and brush things away!

My brother rang yesterday and called me a whimp because I didn't go into work, maybe I am in comparison with him.  I don't know how he copes with his ms and bowel problems and then this chest problem (still no word of what it is - 8 weeks since his scan), but I doubt anyone I work with would have gone into work yesterday feeling like I did. 

Better get moving, I am going in today. .. hopefully will feel better emotionally later.

Saturday, 20 August 2011

My lump!

Gosh three times in one week, I never usually do the blog more than once a week.  My lump is a lymph node and I guess it is the meso.  It's good to have the meso circle as Debbie really cheered me up this morning when I rang her about it. 

My doc is on about having it cut out at the surgery and I go back next Thursday to speak to the doctor that removes lumps and bumps in house.  I am also on antibotic's to see if it brings down the inflamation.  By it is sore, the more you prod the worse it feels.  At least I do think it will cure the burning if it goes. 

As I was lying in bed this morning with my burning and my heavy weight in my stomach and then the iron box feeling at the bottom of my left rib and tip of my left lung I thought "wouldn't it be nice to wake up without having to move your body in a certain position to get out of bed and just to feel good"  I have to hold my ribs to try and stretch them away from my lung so I can move.  I find I wake up during the night doing the same if I move in my sleep.  We seem to stick together inside!

I guess I am know praying for a miracle that the node is just infected with a bug, the burning will go when the infection clears and no more gabapentine or brother or mother of the same tablet again.  This means my memory might come back to somewhere good and I won't be such a moody mare either, the downside of dropping the tablets is doing the extracting off them.  I hear coming off is as bad as going on, bit like when I went cold turkey off those tablets back in 09!

Oh well, life goes on as they say.  Have a nice weekend folks, and to quote Lyndia & Steve 'Do something positive'

Friday, 19 August 2011


Yesterday was the most pleasant medical experience I have ever undergone.  Mind it would have been a different story if the admission nurse had got her way.  When I went to sign in and they take you into the cupboard she was telling me that having sedation didn't mean I would be asleep I and I would know everything that was going on but would be unable to stop it.  The younger and unwise me would have said oh well I won't bother, but I stuck to my guns and got the sedation.  They did have some trouble getting the needle in but once it was in I knew nothing until I was woken up by a nurse with a cup of tea in the recovery lounge. 

The best thing is there is no sight of cancer down there, the saddest thing it isn't a quick fix as its bile, probably from loosing my gallbladder so this uncomfortableness will be with me for life.  I don't eat fatty foods to start with so I don't know what else I can knock out of my diet apart from milk.

I have made another discovery, this burning pain started after my return from the USA in March, I had a little pinprick on my left boob near the top and thought not a lot about it, after all they had pushed through the cryo tube in that area.  The burning has been getting worse and on Wednesday I somehow caught this spot with my hand and nearly jumped, it isn't a small pinprick anymore its a hugh lump and it grows or shrinks depending where my arm is located.  After prodding it a few times it became really tender and hasn't stop hurting since.  Typical I get one thing sorted and then go and find something else.  If its a cyist caused by the cryo then a quick chop chop and no more burning pains either .. I hope.

Hubby is a little more concerned than me, I can see his mind ticking over wondering whether its seeding or not but I am sure it isn't.  I said that the guy who shoved the needle in seemed to be enjoying himself and now I am paying the price.  I have managed to get an appointment with the docs today so hopefully will find out there opinion.

I have tried unsuccessfully to get onto macmillans site for quite a while but today for some reason it let me in.  I don't know about you but I find it very difficult to move around it, I know it hasn't changed since its last make over and I have had trouble ever since.  Anyway I was reading an article about a young lady who's Dad was diagnosed with the 'S''s and wanted to log and and tell her to get him in for surgery but would the thing work.  Two months later and it finally lets me in, I know from following her article she has been to the website and I hope she found the info on the surgery helpful.

Time is ticking and after having a day off yesterday I have mountains of work to catch up with.  I am still months behind on all my accountancy work, all 6 year ends need doing now and I still have the other housing site to start as well as sell these houses at Spennymoor!  Life it gets in the way of things doesn't it.

On top of that Lexi licked her foot open yesterday because neither of us were home for 3 hours!  She must really miss us.  The sock will be on her foot again today, although hubby will be in all day with her so hopefully it will stay on. 

Funny how when one problem gets solved another appears!  Good job I have strong shoulders!

Sunday, 14 August 2011

Where was I?

How time really has flown.  7 years ago around this time of the month I had just been discharged from James Cook after a 41/2 hour operation where Andrew Owens had removed 2 large tumours off my lung and 20-30 little ones around the rest of my lung.  Little did I know then that it was meso, I was just thankful they had found out why I was constantly ill.  I don't really remember much about those first few weeks as my lung kept filling up with fluid and before I was told the diagnosis on the 26th August I had been back in twice to clear the fluid. 

They say every 7 years our body changes, I wonder if mine will change now 7 years have passed and the meso does stop still.

We take whatever happens in our lives and just carry on, we learn to cope, somehow we deal with it, but what about our partners.  Since being married I bet we have spent more time for me recovering from surgery, in one form or another, than we have been on holiday together.

11 days before we were married my future hubby was told he had a terminal cancer and would be dead within the year.  The pain that went through my heart that day I will carry till the end of my own days. Obviously, they got the diagnosis wrong as he had had a severe case of food poisoning which had attacked his spleen, liver and kidneys and done some strange stuff to his blood.  The 48 hours we had to wait for the hospital to double check everything was nerve wracking, we had our wedding and the honeymoon just days in front.  I remember leaving him in the house waiting for a telephone call while I had to go to the dress shop for my fitting and my maid of honours fitting.  It was the only day we could go due to her shifts.  I will never forget how guilty I felt leaving him.  He still wanted to go through with the wedding and I promised to myself I would make his last year the best he could ever have.  I still remember the emotional pain I went through and never told him during those days how I felt. 

8 years later it was the other way around, but in this case the diagnosis wasn't wrong, that first year we looked at doing everything we always wanted to do, go back on a safari, try a cruise but I also wanted to carry on working for as long as possible.  As time goes on you forget how important doing those things are, have I let my partner down by not treating every year as our last? 

In life we do become complacent, then suddenly we are old and sitting in a chair wishing we had done x,y or z.  I saw this with my mother and I don't want to end that way.  How do I improve what we do, but then what is wrong with what we are doing.  We still enjoy each other's company, we enjoy walking the dogs together, sitting in the garden together, spending time doing the crossword in the Daily Express or the Sunday Times.  The little things are what make life more important.  Are we remembered and missed because of a holiday - no, its the everyday things we do, but on the other hand that makes loosing someone even harder. 

I should make our wedding anniversary a special day, for more reasons than most.  I asked hubby if he fancied going out for a nice meal or a day out somewhere, unfortunately he said the meal is out because I shouldn't eat anything heavy the night before the camera and as for a day off, my afternoon has been booked with a 2 hour appointment.  See normal life gets in the way of marking days as special.  Hubby tells me everyday is special with me in his life, which always makes me worry how will he cope when I'm not here.

On that note I think I will leave this here, as I don't want to think about when I'm not here either, hopefully it will be many a year yet before I have to face up to it.

Keep well my meso friends, remember everyday is special.  PS the new photo of Lexi is on her 10th birthday, hubby baked her a cake but I don't think she really understood what it was for apart from eating!

(Dog brigade don't worry - the cake was made from chicken not chocolate)


Wednesday, 10 August 2011

Current times

Well what a mess we are in, and everyone around says the situation will get worse.  The floodgates of Britain have been held open for far too long and we will pay the price for this.  The working man throughout the breadth of the country will be paying out more Tax and more insurance hikes to cover the cost of the riots.  If we were in china the tanks would have been called, and no I don't think we should go to the extreme of shooting everyone involved, but it would surely be a deterrent, as it is we didn't have a deterrent and now the riots are moving around the Country.  This will end up driving more people to move away from democracy at the poles and bring in the NF or UKIP and to be honest what does the government expect.  We have nothing to stop people arriving here, if they were so afraid for their lives then why didn't they stay in Europe.  No wonder Europe is against action, no one stays there do they, no they all arrive on our banks because we are handouts to all unless you actually live here or worked here.  Its like that TV ad, 8 million children die needlessly, now I think 8 million children are born needlessly.  The world can't carry 8 million children every year, drop condoms on these countries or teach them raising one child or two makes it easier on them, even better do what India did, send out medical teams and give them all the snip!  We can allow people on TV or show news reels of people acting racist to our soil yet we can't do the same without being called bigots - come on lets start having equal playing fields here.

That's my rant at the world for the moment.  Have taken a few steps, probably in the wrong direction, with pain.  As I am taking the gab I thought I would drop the morphine by 10, which doesn't seem to be having too much of an effect, although I could have chosen a better time as I am worn to the knees.  I went through a nothing day on Sunday, as I just had nothing left to give.  My body ached, my energy levels were -100% and I didn't even want to turn the computer on.  I am finding my moods aren't as bad now but the burning isn't really improving and for tracking some of the pain its quite difficult as it comes and goes.  My heart region is a lot heavier, but I am sure this is because I haven't had my batteries charged recently, bring out the sun!!  Burning under the arm is getting worse and last night I fear the chinaman was back, but his axe was more like a little drill.

The Doc agreed to use a camera down my throat, so on the 18th I will finally find out if there is something going on that can be easily remedied.  It would be nice to wake up without one less problem.

Am thinking of a long weekend in Majorica - does anyone out there recommend any good hotels in a flat zone?  I have been told that the hotel Illa D'Or is in a flat region but don't know if there are cushions on the sunbeds!

Mam's probate today so had better get moving - have turned the heating up to warm the towels before I jump in the shower.  One thing about the cool weather, Bear isn't panting so much during the night.  We bought him a chill bed - its like a waterbed mattress, only problem is he won't lie on it.  We have now put it over the shower tray to protect it from him and his claws.

Monday, 1 August 2011

Oncologists Visit

I went to see my oncologist last Monday night and he was thrilled with my results.  A few mm in his eyes wasn't worth getting upset about, after all I had taken out the largest tumours and the rest seem to be steady.  Yet the subject turned back to if I hadn't taken control of where I was going I probably wouldn't be here and I seem to know what is best for me.  So what is best - I have no idea but I do know that I am doing nothing - yes you got it - nothing - I am going to enjoy the next 3 months and shove meso where it deserves to go.

I did gleen one bit of information that I never knew before, when Dr Owens removed the first lot of meso it was fiberous, and of course I had mixed meso (both E's and S's) but it was more in sheet form.  The second lot removed was like baked beans all individual but lumped together and I believe all E's,  this time it seems that I have individual tumours.  I didn't think meso could change its form in one person but wow am I glad.  Maybe I will have more luck in the future when I do need to remove them, if they do stay individual.

My mcmillan nurse, who I have had some 5 years although I haven't seen her really since middle of 09 until recently, has had her area redefined.  I am sad about this because although I didn't call on her alot I had built up a relationship and she had seen me go through so much with the chemo and the surgery.  But it's the patients she see's more of that I feel sorry for.  Especially if she has some long term elderly on her books, how do they start again.  Thought just isn't put into these things at the top end is it.

I have worked some long hours this last week and maybe it was because I was tired but on Wednesday during healing my mind was thinking about what I needed to get done at work and  my mam popped into my thoughts.  During the night I awoke crying my eyes out and the only thing I can remember is my mam saying "I have to go now", and it felt that she had really been there.

Better make a move, its Monday morning already - still no glorious summer sun but I guess its warm.