live feed

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 ￂﾠ 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 ￂﾠ I thought if I waited until one settled down before lifting I would be better off,ￂﾠwhen the symptoms settled after 2 weeksￂﾠ I lifted them, only to find the symptoms much worse ￂﾠ 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 ￂﾠ 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 ￂﾠ I hate having to take tablets at the best of times soￂﾠI just don't know how he does it I have finally managed to get an appointmen...

Mon_Apr_15_08:00:46_PDT_2019

It does feel good to still be here, especially at the tender age of 44 I didn't think I would see 45 let alone 46, now I've hit 51 and hopefully I will still be here planning my 55th, neigh 60th! ￂﾠ To be honest I didn't even realise it was my birthday approaching like a rapid rate of knots until Wednesday and Shirley at Healing gave me a birthday card ￂﾠ I am so absorbed in the housing that datesￂﾠ just don't exist One thing I have certainly learnt for my 52nd year is that I am either wanting to battle or wanting to hide away from meso ￂﾠ I spent the majority of my life working and fitting nothing else in, now that I should be fitting other stuff instead of work I just haven't the energy, or as I wrote to my meso mate, is it because it just isn't in my personality anyway ￂﾠ Today was wonderful, we actually got back over the fields, the grass has been chopped down so no fear of it annoying Bear's neck or Lexi's bum ￂﾠ The dogs truly enjoyed the fr...

Mon_Apr_15_04:00:43_PDT_2019

We had a lovely lunch yesterday spent with Helen and Barry followed by Helen been mauled by a 10st Black bear I think Helen fell head over heels with the Black Boy and for a person not too keen on dogs certainly enjoyed the loves he was giving her It was great to catch up again so soon after LA, but I must admit I was a little envious as they had come from seeing Take That at Sunderland on Friday night Although it is terrible that we met through having mesothelioma and would never had met, the only good thing about meso is that you meet some wonderful people, unfortunately they are on the same journey as yourself I had hoped that we would have had a family walk over the woods today, our niece has arrived to stay for a few days and hubby finally tracked down a large ramp that enables Bear to walk straight into the Jeep at a lower ratio and much more rigid so it doesn't buckle under his weight ￂﾠ The weather though has turned to wild winds, so no walking out for me I deci...

Mon_Apr_15_00:00:45_PDT_2019

This lump is causing some trials and tribulations ￂﾠ I saw my onco who thinks it is seeding, I went back to the docs on Thursday and we didn't remove it ￂﾠ The local surgeon had a feel as I was explaining that it could be meso ￂﾠ 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 ￂﾠ 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 ofￂﾠ any further consequences last Friday ￂﾠ I am now waiting for a radiologist to see me and see what he thinks ￂﾠ If we had a copy of the CT Scan that mayￂﾠhave helped but things have changed in that area up here too ￂﾠ My Doc can't request it,ￂﾠneither can my lung nurse so I had to fill in the formsￂﾠand wait to see if they post it out ￂﾠ 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 ...

Sun_Apr_14_20:00:41_PDT_2019

What a beautiful two days we have had UP North, I actually managed to spend some time in the garden, yesterday just reading info on the new Chief Architect x3 program (wish I understood more about CAD) while hubby did this and that ￂﾠ I did have a go on pushing the lawn mower but he only let me do 6 runs, I think he thinks I can't cut grass, its only a machine you push up and down for God sake!ￂﾠ I did have fun getting the blaster out and giving Bear and Lexi a good air clean, although Bear just wanted the thing in his mouth again ￂﾠ I was amazed at the dandruff in our Lexi's coat ￂﾠ Both hubby and I burnt though, we had cloud cover on and offￂﾠmust of the afternoon so didn't think about sun lotion oh well Had a couple of hours out this afternoon, sweeping the paths and giving a bit of a tidy up, I had planned to read another 5 chapters of this guide but felt guilty just sitting ￂﾠ I hope this weather stays, the lovely warmth on the bones brings the best outￂﾠin me...

Sun_Apr_14_16:00:46_PDT_2019

It was truly great to feel the sun on my bones although like normal I jinxed the weather and we had a thunderstorm on Saturday ￂﾠ Why is it that our lives are so different now to before ￂﾠ I had a couple of drinks on Friday afternoon while travelling to have the worst headache on Friday night ￂﾠ I left hubby and friends in the bar enjoying the warmth of the evening air and went to bed ￂﾠ The only thing I can complain about the hotel was the hard pillows and beds ￂﾠ My back ached the next morning and so did everyone else's My stomach wasn't that great either on the first morning away and the panic of am I doing the right thing booking a week away with the girls jumped into my mind but on Sunday I felt a lot better and thought Jan get on with it ￂﾠ Live girl otherwise what's the point ￂﾠ At least if you have rotten guts in Greece you have the warmth and the sunshine! I looked at every picture I could of the hotel outside - each sunbed looked covered in a 2inch mattress...

Sun_Apr_14_12:00:42_PDT_2019

Can you believe it I finally get to the surgeon and I can't find my lump!ￂﾠ the hard core has disappeared again and the soft squashy tissue isn't squashy ￂﾠ I don't know whether its because my Doc is (in my opinion) one that gets your heart rate going or the healing did a damn good job The lump does move and after forcing a few coughs it came up and down from the ribs, Aha lung tissue being forced by underlying meso ￂﾠ Can't do it and this is why: To remove the meso would mean cutting away alot of healthy tissue to ensure it was clean, because of its situation part of my rib and muscle would need to come out too ￂﾠ A lot of pain to follow and another year for the body to adapt ￂﾠ Then, once in how far does the meso go, if the lung needs cutting then serious risks of it not repairing, its close to the air leak and fluid department which makes even more complications ￂﾠ Hence, unless the lump explodes and goes red and sore and weeps it stays where it is At least ...

Sun_Apr_14_08:00:40_PDT_2019

I spent most of yesterday transferring photos from the hard drive of the computer to a separate hard drive ￂﾠ As hubby is determined to get me into photography I thought I had better tidy up the computer ￂﾠ Our digital photo's start at Xmas 04 and it was strange going back over the dates ￂﾠ Here we went to Dubai after Radiotherapy, then in the middle of Chemo, here was the safari, then the cruiseￂﾠetc It has made me wonder, for the thousandth time if I did make the most of my cancer free days ￂﾠ Looking at the photo's I did more in 05 than I have done from the Op in 09 to today ￂﾠ I know that I have, even if I haven't holidayed all over the world, but I think I spend to much time worrying over things than living them ￂﾠ Even my aromatherapist said I seemed more atￂﾠ home with myself recently, her meaning since the meso has returned as I'm not on edge all the time wondering what the next scan will say ￂﾠￂﾠ Even though now it is the worry of how much the mesotheliom...

Sun_Apr_14_00:01:38_PDT_2019

It was a great Saturday and Sunday out with the dogs ￂﾠ Although hubby had to drive down the field for me as the wind by the gate was too strong and I really needed to get some fresh air into my lungs ￂﾠ Although it was quite windy over the woods I took my camera and got a few shots of the dogs doing what dogs do, sniffing every patch of grass where either a Rabbit, Deer or Fox has walked over The trial I was going to see about on Friday was pulled as a person on it had terrible skin problems (something like his skin was falling off) ￂﾠ I thought I was just going to authorise them to get a sample of my tumour and talk about what they have on offer - not to actually sign the dotted line, guess I was saved from making that decision It was great too seeing Chris Knighton on the regional news along with two other meso sufferers that I know, Peter by email only and Chris who went through Chemo with me back in 04 ￂﾠￂﾠThey bothￂﾠseem to be doing so well, although Chris has always been...

Sat_Apr_13_20:00:42_PDT_2019

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 ￂﾠ Strange how the mind works trying to get your body out of a situation ￂﾠ I am now seriously worried that this is the start of the end and there is nothing I can do ￂﾠ 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 ￂﾠ Why is everything so hard for us to have ￂﾠ Does every other group of cancer sufferers have the same problems as those of us with meso?ￂﾠ No cure - no procedure! I know that a few others are having a tough time too, Mave has b...

Sat_Apr_13_16:00:40_PDT_2019

The sun has left the North East of England but not without a few good days, I have more colour from my few days at home than my week on holiday ￂﾠ The colour helps us look a lot healthier than we are,ￂﾠ this morning I looked grey and my tan just didn't manage to hide it During the night I had that terrible feeling of pressure right in the centre of my chest, where my heart should be, which then turned into a weight that was oppressive ￂﾠ I was deciding whether to take some morphine from 1 30 am because it just wouldn't let me sleep, but I didn't want to disturb hubby by trying to find it in the dark When dawn came and it was light enough I took a couple of pills and slept for another couple of hours, pain was still there but at least it eased enough so I had some sleep ￂﾠ Maybe stress has helped it along, I returned to work on Monday and ended up doing a long long day, followed by another long and tiring day yesterday ￂﾠ The pain kept at it until I top...

Sat_Apr_13_12:00:38_PDT_2019

I received an email from a young man I have had the pleasure of being in touch with for a number of years ￂﾠ He has been fighting on behalf of his mam since her diagnosis, researching everything and even travelling around the world to get her medication to fight her Mesothelioma ￂﾠ It is with great sadness that his mam has lost the battle, it would have been herￂﾠ65th birthday shortly ￂﾠ I am sure that everyone in the meso circle will send thoughts out for Mrs Szymanski and her devoted son and family I hope you can watch over your family from afar and always keep them close in your heart R I P Ben sent this link and it does remind us we are lucky http://www asbestos com/blog/2012/02/07/key-tips-survivor-insight-series-recently-diagnosed/ I wish the magic pill was on the horizon and all our worries would be over

Sat_Apr_13_08:00:38_PDT_2019

Yesterday started badly, the boiler had stopped working and when we got up the kitchen smelt of car exhaust fumes ￂﾠ My first thoughts were of Bear who insists on sleeping downstairs, I hope he didn't have a rotten headache, but he seemed fine We discovered we had ran out of fuel, I thought there would be some safety in the fact that the boiler stopped working, but by the smell I have serious concerns ￂﾠ The Boiler is attached to the outside wall so something is wrong ￂﾠ We borrowed a 100 litres of fuel and tried to ignite the boiler to no avail ￂﾠ In the end we had to call an engineer, he arrived at 2 and left at 5, still no boiler working and even worse an expensive bill to pay ￂﾠ Hopefully we will get an emergency delivery on Monday of 2000 litres and see if it gets the boiler up and running ￂﾠￂﾠ Needless to say the house is an ice block, even worse our logs are soaking wet so we can't light the open fires in the office or old lounge! It hasn't helpe...

Sat_Apr_13_04:00:37_PDT_2019

I have been lost without our internet, honest you would have thought my hands had been chopped off ￂﾠ The Router decided to crash, one minute on the next off until finally it died ￂﾠ Because of the complex set up I have at home with networks for work and home I couldn't just pop along to whoever and buy one, Monday seemed a long time awayￂﾠfrom Saturday I can tell you I have taken the step and tried to join Face Book ￂﾠ Well I think I have, but I just can't understand how you find friends ￂﾠ I don't like the idea of entering my email address in the box and it finds people I know, I think maybe a little dangerous as I could be giving out names that are then sold off for data services or am I over cautious! Wasn't the Queen a good sport for doing the opening at the Olympic's The loss ofￂﾠourￂﾠinternet hit hubby hard, not having sky (the tree's stop us getting good signals) so he was hoping to watch the coverage stream through the comp...

Sat_Apr_13_00:00:38_PDT_2019

I have so much to catch up on with the blog but before I start I received a wonderful email this morning from Steve who lives in Austrialia ￂﾠ He was just been diagnosed with Mesothelioma 4 weeks ago and has started a blog to record his thoughts and treatments Steve has just started Chemo and I hope you can send some positive thoughts his way Find his blog on http://mymesothelioma com au On top of that I heard from Andrea (Travel Link) which I have copied below Hi Everyone I would just like to thank all of you that have sponsored us to date We have managed to raise ￂﾣ1250 so far If you haven￢ﾀﾙt already sponsored us, I urge you to consider doing so Unfortunately since my first email my Dad had his routine 3 month check up and we found out that the NSCLC was growing we are awaiting the next course of action following on from an urgent CT scan ￂﾠ So it is even more imperative than my last request Please try to give anything that you can ht...

Fri_Apr_12_20:00:37_PDT_2019

Where would I be without my meso circle? You have been there for so many years, long before I actually started to blog and I do appreciate the friendships we have made, the emails we share ￂﾠ Even though I have never met many of youￂﾠI feel that we have all been together fighting this battle together ￂﾠ We pick each other up at times of need, show empathy when required and make each other laugh with the odd joke or comment on normal life ￂﾠ Part of me wishes I had started the blog a long time before, but I wasn't sure how to create one, but there again through chemo I think I may have wrote comments that would turn everyone against even trying it ￂﾠ Hubby and I were discussing chemo last night and how I will feel during it ￂﾠ He said if I had wrote about it then maybe I would stay well away from it, which made me say something like "When I'm gone you can always read my blog if you want to remember something" didn't that sound cold and heartless ￂﾠ...

Fri_Apr_12_16:00:38_PDT_2019

Yesterday some idiot who represents us stated that Asbestos is safe ￂﾠ I've tried not to be political on this site, hence I started my other blog but didn't keep it up to date because so much of what goes on in our government drives me mad, I would end up writing everyday I received a notification yesterday from CNM Training Solutions which had this: GMB CONDEMNS EAST MIDLANDS UKIP MEP FOR EU AMENDMENT THAT IGNORES THE DANGERS OF WHITE ASBESTOS This amendment flies in the face of scientific evidence from the World Health Organisation, United Nations Environment Programme, the International Labour Organisation and the International Agency of Human Carcinogens says GMB GMB condemned the attempt by Roger Helmer, UKIP MEP for East Midland, to amend the proposed motion in an EU Committee on improving safety measures on exposure to deadly asbestos fibres in the EU by inserting clauses claiming that white asbestos (chrysotile) is not dangerous See notes to editors ...

Fri_Apr_12_12:00:40_PDT_2019

I had hoped things would have improved once the chemo was done, but heyho my name is Jan and nothing goes my way ￂﾠ The chemo has done its damage to my stomach, thick orange and yellow liquid like the consistency of beaten eggs yolks came up, the pain something worse than anything I have known ￂﾠ Nothing would stop the pain, I suffered all night and then finally I managed to throw up this stuff, it eased for a while until it started again ￂﾠ I waited until Monday to phone the hospital, otherwise it would have been sitting in a bed in agony with them unable to do anything ￂﾠ May as well spend 2 nights in ones own bed feeling ill than in a hospital one ￂﾠￂﾠThe damage is now done if I throw up I am now bringing up blood ￂﾠ On Monday I also received an email back regarding my email for more space for the chemo lounge, it made it sound that I had a go at the nurses and of course they were going to be defencive ￂﾠ So I wasn't surprised when I rang at 10 than it was 3 hours ...

Fri_Apr_12_08:00:38_PDT_2019

Having had a couple of nights with the old Meso sweats, last night was a rude awakening to pain once again ￂﾠ My sleep disturbed by a pain in the heart area, as much as I hope it is something else my brain kept telling me my pericardium was once again filling with fluid,ￂﾠdid the chemo get rid of the first lot and this is a replacement I just don't know ￂﾠ I didn't want to wake hubby so with my little torch light I found my morphine and took a couple of tablets, the rustle of tablets woke him so we both didn't sleep well ￂﾠ In my sleep my mind was trying to lock the pain away, I often wonder if this is what happens with other meso sufferers I had planned to go shopping today as well as take the dogs with hubby, the walk was out due to the weather and shopping would be no fun with a very heavy heart, but we did nip to the local shops and had thirty minutes away from the house ￂﾠ We came home and decided to check what pictures we have on the computer ...

Fri_Apr_12_04:00:39_PDT_2019

Over the years I have had a couple of people post articles on my blog ￂﾠ Thisￂﾠ is the first of hopefully 3 ￂﾠ I hope what you read will be able to help you if you live in the USA My name is Savannah Cline, RN, BSN I am the medical liaison for Pacific Meso Center at Pacific Heart, Lung

Fri_Apr_12_00:00:39_PDT_2019

Thu_Apr_11_20:00:37_PDT_2019

Rachel is a long term survivor and has been blogging for a number of years, she recently contacted me to ask if I could share her insightￂﾠonￂﾠher approachￂﾠon my blog so without further introductions from me I had this posting over to her Blogging the Cancer Frights Away By Rachel Pappas www 1UpOnCancer com When I heard the three dirty words: ￢ﾀﾜYou have cancer,￢ﾀﾝ I wasn￢ﾀﾙt shocked Two weeks earlier, the radiologist walked into my cubical at the imaging center and threw the ￢ﾀﾜc￢ﾀﾝ word out, while I lay there, staring at the ultrasound screen Days later my breast surgeon reconfirmed the probable writing on the wall as she stuck me with the biopsy needle By the time the official call came, I had myself diagnosed as a gonner￢ﾀﾔI'd had far too much time to spend on the Internet, and the data floating out there rocked me Does it help to read for a third or fourth time: ￢ﾀﾜcarcinoma associated with poor prognosis￢ﾀﾝ? Do we need to read ste...

Thu_Apr_11_16:00:38_PDT_2019

The wind has blown itself out it seems looking from the window out into the front garden ￂﾠ I don't know how cold it is, I have lit the log fire to keep my feet warm and help stop the drafts that come down the chimney and under the doors It's good Friday and but what I don't understand is why Easter gets moved so much, why can it be late March one year then late April the next ￂﾠ I remember being taught about it but still surely the church could come together and pick a date that could be near static like May Day! I had writers block on Wednesday but Thursday afternoon another chapter raced across the screen, I wonder if I am putting myself under too much pressure ￂﾠ It would be good to have the second book ready for kindle as I get the first one printed but that is a tight deadline I had a lie in this morning, well till 8 30 and my stomach is certainly let me know the bile sat there for too long, I truly wish I could have had my stomach put back in place ￂﾠ ...

Thu_Apr_11_12:00:40_PDT_2019

Twice in one day what is going on with me, well I'm having one of those days and if you read my blog you also know this is my release, release from the anxiety meso brings ￂﾠ Firstly I forgot that chemo changes our bodies, ok you say your chemo was Nov last year so what's the problem, I burnt when normally my skin wouldn't even notice, it's the first time it has seen sunshine and those precious damaged chemo cells have never had sun on them before ￂﾠPeople and here I mean those around us, think they know how we feel, think because we are inactive, don't have anything wrong, they don't seem to accept that our body is working twice as hard to keep us in inactive, that we are trying our hardest to be normal, but tonight I think I have fallen off that emotional washing line, maybe I haven't changed the sheets for a long time and the line has got tight, tonight it sagged and hit rock bottom ￂﾠIf I hear bless you one more time I swear I could commit murder...

Thu_Apr_11_08:00:38_PDT_2019

What a week we are having from hot weather to brutally cold days then muggy nights ￂﾠ Today was my visit by to the physiotherapist, I asked him to be gentle with me as it seems this nerve problem is doing all kinds of weird and unwonderful things ￂﾠ Who could believe that even passing water could become so painful, no stinging but a dull pain in the muscles ￂﾠ He reiterated that the damage will take months to correct and that the brain is trying to deal with the different signals, hence the pain travels to different places ￂﾠ Please I begged, I just want to be normal!ￂﾠ To think this all started with some strange spasm in my left leg when I lifted it a certain height or went to sit or cross or my legs ￂﾠ Ever since surgery I have stayed away from massages on my back, allowing only along my shoulders even though I would love a great back rub ￂﾠ Now I wonder if I had allowed a back massage would I be having all this trouble now?ￂﾠ Although by the time he has p...

Thu_Apr_11_04:00:37_PDT_2019

I had to have a sleep, such strange dreams, again caused by the smoking tablets, but I have continued, hubby has decided to stop using them ￂﾠ I think tomorrow though I will only take half a tablet and half again for the rest of the week ￂﾠ They are making me sick and my appetite has gone ￂﾠ Last night for tea I made a crisp sandwich, Friday night instead of dinner I voted for a cheese toastie, but the dogs ate most of it We have finished packing, my back is achy and my left leg tingling, I am so pleased I took the painkiller early this morning ￂﾠ Will take the next one with dinner, really want some roast beef and Yorkshire puds ￂﾠ Trouble is keeping my eyes open There was a stakeholder meeting by Mesothelioma UK last week, I didn't get and will be interested to know what took place ￂﾠ Things may seem quiet on the Meso front but I know that the NHS is working hard to help create a way forward for us meso sufferers ￂﾠ Although by the time they get the drafts finalise...

Thu_Apr_11_00:00:39_PDT_2019