Hi my name is Barbara and I am new to the site. My darling husband was diagnosed with this condition in May 2013, after having pneumonia and a pleural effusion, drained and treated with antibiotics in February 2013. He has always been fit and healthy and now I am watching him waste away. He is under Papworth Hospital, has had an operation to remove the pleura and six months of chemo. He responded very well to the chemo and we all had a glimmer of hope. He hasn't had any treatment now for nearly a year but does suffer with recurrent fevers. He is going to have more chemo to hopefully reduce the fevers, the tumour itself is very slowly growing. These are not night sweats, he gets those as well, but his temp peaks at nearly 40 degrees, he takes antibiotics for these times, but the doctors do not understand why he gets them. Between these times he is fairly ok, slowing down,  he has led a very active life and watching this is unbearable.

Hi Rainbowdash

Just wanted to comment We did not see any change just by looking at my husband during treatment (other than it knocked him for six with side effects) but although he only managed half his treatment when he had the scan it did show shrinkage in the tumour (great relief).  As there is no further treatment on offer he now manages with pain management and his consultant deals with any other symptoms as they arise. - she and her support workers (including a team of community nurses) are just a phone call away and we are very lucky in that the hospital is within half hour's drive (on a good day!).  He was diagnosed at nearly 61 and is now 63 and was in good health otherwise (it was a chest infection which would not clear up that started us on this rocky road).  There seems so many different ways that this cancer progresses/affects different sufferers so it makes it a very personal journey.  Hope your Dad manages the rest of his treatment and that the scan will bring some re-assuring news.  Am sure he will tell his team of any discomfort or side effects so that they can help him with medication (never seen so many options that hubby was offered because of his various symptoms but sadly in the end his body just rejected the chemo drugs).  Hubby has been left with very little taste which certainly affected the amount of food he could/would eat to begin with but we slowly re-introduced some of them but he now eats a lot less and relies more on nutricious shakes (due to cancer spreading and limiting his intake).  Every day is a bonus as far as I am concerned but it is incredibly hard knowing we have no control over the eventual outcome and watching his condition changing.  On the upside  having the little treatment he had, obviously gave him more time and we have had a new grandson in that time too.  We currently have our eldest grandson (6 in Nov) on a sleepover and whilst hubby is peacefully sleeping I am about to go to the park for 'games'.  Take care of yourself and come and chat whenever you want to share.Jules

Hi Barbara

Just wanted to welcome you to the forum (though none of us would choose to  be here!).  Am sorry to read that you too are going through this difficult journey with your husband.  I think your husband must have had an earlier diagnosis of disease that mine as surgery was never an option in our case and his body could only withstand 3 chemo sessions.  It is such a variable cancer in the way it affects different people but certainly watching our 'men' who were once fit and healthy and, in my case, a workaholic, is so very hard.  I seems to learn a new way of coping each time we are faced with a change in his condition though am not sure where that stregnth comes from.  I can say that this forum and its 'listeners'  have been  a 'magic ingredient' in as far as our journey has been concerned.  Having somewere to come and chat both in general and about his illness has helped me enormously.  Nothing can change the facts of a terminal diagnosis but I am doing my best to make the most of whatever time we have been dealt (celebrating 37yr of marriage next week too).  Hope you find the forum a supportive place to be and I am happy to chat anytime you feel the need.  Look after yourself too (easier said than done I know!).  Regards Jules 

Hi thank you so much for replying. I am finding it very difficult and am trying so hard not to be bitter. Like you we have been married for a long time - 43 years next year. I have been with him since I was 19.  A very happy marriage, soul mates, we have three daughters who are distraught, so there is only so much I can burden them with.  I have bought a diary so I can vent my feelings on my darkest days.  I feel selfish thinking of me when he is struggling, he has always been strong for us all, workaholic too so that we could have a good lifestyle. But then this wretched disease affects the ones who are practical. Martin was diagnosed with stage 2 pleural mesothelioma. He had pneumonia a few months before and had never recovered. Alarm bells were ringing with me because he has never had any serious illnesses and I worked in a Pathology Lab for twenty years.  The illness is cruel, he has been lucky to have had surgery and at Papworth too, but that was horrendous, we had to shoulder him out, he was a wreck, then six weeks later chemo. Christmas last year he was just coming round and then these fevers started. The doctors cannot make them out and say he will be running, hot, but a fever of 40 degrees is not right. He has a few good days in between and then off we go again. Our GP has prescribed him antibiotics for these episodes. He is starting another course of chemo to see if this will control them.

Now I have ranted on a bit.  I am sorry to hear about your husband. You sound as though you have problems getting him to eat, I feel I am dealing with a child again trying to coax him to eat. My fridge is full but most gets thrown out. Likes something for a while and then not.... , difficult when they are wasting away, 6ft and weight is 10 stone.  B

Hi Barbara.  So sorry you find yourself on here too.  Its so cruel.  Everything you describe sounds like my poor old dad.  My mum throws so much food away but likes to have it there "just in case he fancies something".  My dad weighs 9 stone now and is 6ft 1".  I weigh more than him.  I actually saw him with bare legs yesterday and I had to leave the room and break down.  He looks like an anorexic.  My heart breaks a little bit more every day. 

My dad has had the fairly new procedure of plueral talcing (where they use sterile talcum powder between the lining of the lungs to try to avoid further pleural effusions). Again not sure how successful this has been as my dad is currently producing an awful lot of mucus from the lungs.  Am hoping his oncologist can shed more light on this next week.  My problem is I cannot comprehend how my dad has deteriorated so much since May.  I simply can't see how his body can cope with the amount of weakness, fatigue and lack of appetite.  Will he still be here at Christmas?

Now I am ranting.  Sorry, feeling angry today.

Condition of our two brave men sounds very similar (though mine just on pain management now). 6ft 2 and 14stone two years ago - now 10.5 and basically lives in his armchair.  Thankfully has maintained good health otherwise which his oncologist consultant says is a positive factor.  Two adult children, two grandchildren.  We literally do take every day as it comes and on the days when he does not sleep so much (now he is trying same medication but spread differently to see if he can stay awake during the day a bit more) this is a bonus.  He travelled the world as an engineer and misses it so much - the  main cause he has had to go on to low dosage anti depressants.  We were told (because hubby asked at the outset) that though the condition is classed as terminal many survive a good few years but so much depends on the growth rate.  We were put in touch with HASAG (a voluntary organisation) at his initial diagnosis appointment and their advice/help with paperwork in the early days was very helpful (really could not get our heads round what he could claim and when and they visited for two hours, filled all the forms and he just signed so help put in place financially quite early on).  Of course we were all devastated (still are) and breaking the news to the children was the hardest thing we have ever done (though they were a bit cross we waited a couple of  months to have all the facts before we filled them in).

Last night we had our eldest grandson for a sleepover and I have spent the morning at the park/shopping with him.   A spell of normality which helps us all.  Please do not feel selfish because of your feelings (your husband certainly would not wish you to feel that way I am sure).  The journey is hard but to cope you have to have periods of whatever normal life is (its not easy doing the watching and my husband often feels frustrated (something I sense rather than being told as he does not like to chat much) when he realises I am 'keeping an eye on him' - don't suppose I would  like it if tables were turned.  Really relate to the food in the fridge - we now have two side - mine is low fat (to deal with cholesterol issues I am trying to keep healthy!) whereas everything on the other side is full fat so that what little he does eat has as many calories as possible.  Favourites at the moment is Vienetta for lunch.  His consultant said there was not point urging food intake as he really cannot tolerate too much at a time and so we try and make up with plenty of milk drinks (usually 2 pints a day) so have downsized the shopping list (keeping a few ready meals in the freezer 'just in case') and also portion sizes so he does not feel overwhelmed.

I do not know about the fevers your husband is experiencing but hope his medical team can get to the bottom of it soon as I am sure that would make it more comfortable for him.  Hope the course of chemo will do the trick but the forum is a great place to have a good rant and rave and no one here ever passes judgement.  Somehow its just easier to share experiences with complete strangers (but who have an insight into life with cancer) and we both want our children to enjoy their lives (though they are regular visitors as we are lucky they live close by).  My husband prefers we do whatever we want to do (I do part time work still) and so far is present when we have family get-togethers as he considers this normal and that how he wants to be.  We will endeavour to give him all the  support we can whilst we can (he is still managing one evening out a week as his friend keeps him company and sometimes they make it to the pub as he enjoys the social evening even though he cannot drink any more (misses his whisky tipple and though the consultant is happy for him to have it, it just lessens the effect of the morphine).  Well that was a bit of a ramble but do let us know how you are all getting  on.  Jules x

Hi rainbowdash

You are definitely entitled to have your angry feelings and a good vent helps.  The fatigue/weight loss is such a big issue with this kind of cancer and though my husband is in the room with me its still really hard not showing how seeing him so frail affects those around him.  Its emotionally draining for the loved ones but physically daunting for the sufferer.  Hope the new treatment helps your Dad be more comfortable.  Our children do not live at home and we are, I suppose grateful they they do not have to see things changing on a day to day  basis, but know they worry anyway - its just natural. I do not know how we manage to cope but somehow we have no choice and its very annoying to have no control over anything that is going on.  I made lunch (bowl of icecream!) which is what he wanted and now its sitting on the arm of his chair and he sleeps (well he will 'drink it' when he wakes).  He never complains or gets angry and sometimes I just wish he would but this has never been his nature.

Hope chatting on the forum will enable you to release some of those emotional feeling - I am often amazed at how I can thump the keyboard when 'sharing' and yet stay peaceful and relaxed so that he does not pick up on my emotions (have been known to break down when chatting but then no-on can see!  I know its hard but do try and 'treat yourself' to some me time as this does help a bit.  Jules x

Am so glad to have found this site. Papworth have support groups but when Martin is feeling ill he doesn't want to go and when he feels ok he doesn't want to to think about it. We take each day as it comes. This is our retirement!! I had just given up work and Martin had wound his business up. We had a sailing boat on the Norfolk Broads, but we have sold it now as the chemo affected nerve endings in his feet and hands, so balance was difficult. We have friends and family nearby who are a great help, but do not understand what we are going through. I am finding it so difficult as I am now having to be the strong bossy one and can't help resent the fact that everyone else is carrying on with their lives, and making plans for the future, you just take health for granted. As for normal times I can't bring myself to do anything I am still in shock, and find myself retreating into our own little world.

I find he prefers sweet things to eat rather than savoury, so strawberries and Victoria sandwich with cream for lunch. B

When Martin came out of hospital last year he looked anorexic too. He has never been overweight, but all his muscle tone has gone. We had a few milestones to conquer too. Birthdays, Christmas, a new granddaughter in June. All done with laughter and tears. I have never felt so emotionally drained. I now  understand the cancer advert with someone catching the patient.  The treatments are horrendous and medication makes him sick especially the antibiotics for the fevers. B

Hi Barbara, Susananne and Jules. We have a new symptom to day and I wonder whether any of your loved ones have(had) experienced it? My mum says my dad has woken up with uncontrollable shakes today. He doesn't have a temperature and his blood sugar level is good at 7.8. He's gone back to sleep now so she's going to see how he is when he wakes up but we are obviously concerned. I've googled it and it says it can be a sign of the end stage???  I'd be grateful for any experience if you have any. Thanks