Hello I am sorry dad has another worrying symptom .My Tony was admitted into hospital because he had to have fluid drained from his tummy that was pressing on his chest making breathing more difficult that was 15 days before he passed away whilst in hospital physios tryed to get him walking without success because of breathlesness fatigue and shakes in legs and right arm so when he came home he was in bed all day the shakes had stopped but he did suffer from anxiety he was on a syringe driver to give meds and our Gp gave him a drug that helped that and he did relax into sleep and he passed away 6 days after coming home very peacefully in my arms .but I must say everyone is different even with the same type of cancer ,if mum is worried maybe phone out hours Dr for reasurance for you all I know how worried are and wish I could help youand mum feel better   ...Will be thinking of you Susananne x

Sorry to read you are facing a new symptom with your Dad.  So far this is not something my husband has experienced though his balance is a bit rocky with the weight loss.  Like Susananne has said a call to his medical support may be a good idea to get some guidance/reassurance or your Mum could ring NHS direct who I am sure will be able to offer some advice.  My husband does often have vivid dreams when asleep now (complete with full out loud conversations and arm movement) and having spoken to his consultant this week this is a side affect of his medication and 'not a cause for concern' provided he is not upset by it!  Sending a virtual hug and let us know how you all are when you have a moment. Jules x

Hi Barbara

As I read your post it 'all rang true' as far as the  muscle wastage is concerned.  Its very hard watching this side of things and now hubby tends to have vivid dreams (with full on chats and actions!) when asleep during the day.  His consultant is aware and we know its due to the medication.  Hubby is not upset by this and consultant is monitoring it.  Some days are more challenging (mentally rather than physically) than others but am trying to deal with it one day at a time.  Our newest grandson will be a year in October and I have just celebrated turning 60 and was glad to have family all around me and was thoroughly spoilt.

Hubby was forced to leave work around six months after diagnosis so never reached retirement age.  He really misses that side of his life and all the work related travelling round the world  but I have never heard him complain or get angry and he told the consultant that he has no fear but does spend time 'wondering' about his future.  Its only when he has to talk with the consultant that I get to find out whats actually going on as he will not talk at home where  he likes to keep things as normal as is possible.

Take care of yourself and do come and chat if it helps.  Jules x

Hi - I think the shakes may be due to medication. Martin has di-hydrocodeine which can make him go a bit high, but best to get checked out. In my view the out of hours service is not very good, we have been told to go to A and E, if hospital dept not open ie his care team,  as this disease is rare and nobody really knows how to deal with it, especially GPs.

Jules - the future scares me rigid.  I have just turned 62 and Martin was 66 when he was taken ill.  I retired when i turned 60 and it was a few months after that this all began, so no retirement for us either. He won't talk about it either, as far as he is concerned he is fighting it with all he can, but what a fight. He doesn't talk about the future, but we are gradually getting rid of things like our boats so (I) we have less things to worry about.  These  are strong men.  I really don't know where I find the strength to carry on either, when I sit and think about it, which I do a lot now as our life is getting quieter, I really don't know how I have managed. I guess it will hit us hard later on.  I feel that I want to go with him when the time comes. B

Hi Barbara

Its a case of we cope because there is no other choice and we want to do our best.  I am trying to follow the wise words of my late dad who died of cancer some six years ago.  He always said that no one knows what the future holds even when well and that its wasted energy worrying before it happens.  He remained grateful for the live lived right up till the end and they had been married 56yrs and my Mum (despite her own problems) set a wonderful example of how to cope in times of loss by 'carrying on' to 'do him proud and even at the ripe old age of 82 she went away on holiday by herself'  Thinking back it was remarkable as they had alway been a real couple (with me as an add on!!).  Her physical frailty(and bi polar depression) now means she is in care but  she showed me how to cope at the time of Dad's death and said she wanted 'to make him proud' and I would like to feel I can do the same.  In the  meantime we continue to live the best way we can under the circumstances.  We have been wonderfully supported by the NHS medical consultant and her support team which includes the community nurses when required.  My husband's GP has been very good and inbetween his hospital check ups she sees him regularly to keep monitoring regular and consistent.  Today he has slept the whole of the morning but is  now enjoying sport on the tv and has managed a slice of toast for lunch.  I suppose I am lucky because I still have part time job (my date of birth means my retirement age is 7 yrs away!!) but I do find sleeping more of a problem nowadays.  As yet hubby does not require much personal help but when that changes, the journey will take a new turn with more hurdles to overcome.  Its certainly a challenge but the forum has been my virtual support and there are some lovely people here so am very thankful for that.  I have just started a spell of annual leave (not sure hubby is looking forward to 'being watched' by me all day long and he still firmly encourages me to be out and about (leave me to sleep in peace!!) and stay in contact with friends   He used to be the strong support and now its my turn (though its not going to be easy).  I have certainly learned to ask for help as soon as I need it (my daughter telling me off in the past for trying to cope alone). Jules x

Hello Jules the mesothelioma tread is getting more busy sadly and all at different stages I am glad hubby is going on reasonably well I notice on the end of your thred that you thankfully ask for help and im so glad you do .when Tony couldnt dress himself bath or shower himself because of fatigue and he also loved to cook to which was lovely for me one less job I missed when he could no longer do it my daughters and son always offered to help with things even dog walking but I was stubbern and said no I can mannage but I was run ragged. Then when he came home from hospital after having fluid drained from his tummy he came home with a care package (2 carers 3 times a day and marie curie to sit at night )Tony didnt realy like it but new I couldnt lift him but I was told I could help but then carers said no as I wouldnt benefit from their help .That realy upset me .They only came for 6 days because Tony sadly passed away bless him its heartbreaking .. Its beautiful weather today sunny and 21 degs I have been busy in the garden pruning  and Rusty and I went for a lovely walk and he had a run on the beach ,hope you have good weather too .So glad you were spoilt on your birthday did you have the bumps ha ha ...Take care Jules hope you both enjoy the rest of the weekend and you coming week off enjoy ....Susananne x

Jules - your father sounds like Martin his out look on life. He is not bitter at all, has always been there to support us whatever life has thrown at us and especially having three daughters, he was the man of the house!!   I think I am finding it difficult because we were so busy I worked part time for the past ten years and with granddaughters to look after was enjoying life, boating at weekends. Now it has turned upside down, we never had a chance to get into the swing of retirement and now pass our time mostly at home. I have read a lot of books. I don't want to leave him, I guess that is a bit silly, we have always done things together so just being me is hard.

As for coping, I think we must run on adrenaline and denial. 

Susanne - I think you are very brave. I hope I will have the strength when the time comes.  As for more people coming down with this disease I think it is the timescale, the sixties, and will see a lot more cases in the future.  B

Jules - as for sleeping I have been given antidepressants by my GP which I take in the evening, they have a side effect of making me tired. B

Susananne

Yes lovely day here too.  Would have sat out in the gaden this afternoon (did visit to launderette and weekly shop this morning) but got into watching the tv too and then 'dropped off' - so lack of sleep last night now made up ha ha.  I have managed in the past week to do quite a bit of cutting back in the rear garden and weeded and planted out the front ready for Autumn (donated ornamental grasses) and mowed the lawn.  All being well I will tackle the rest of pre Autumn tidying whilst on leave (I do get bored sitting around so will find it harder once the weather turns and I cannot escape outside) and have a couple of outings planned.  To be honest not sure how the 'caring for personally' when the time comes  will evolve as hubby is likely to prefer a 'professional approach' which is less emotionally charged. (am just involved in 'back washing' as yet).  I am happy to go along with how he wants to be treated.  My Mum being older could not manage the lifting so when Dad was in need of looking after the care package was in place which helped a great deal (I used to visit at weekends back in those days) and his final week or so was in the hospice ( run by Marie Curie which was definitely his choice and right for us all in so many ways). He had a wonderful sense of humour (am sure thats how he managed to cope with Mum'smental instabilities) and having been disabled by the war (lost his leg) at the age of 21 gave him a certain outlook on life in general.  I think I have inherited the stubborness of my Mother (which often saw us in disagreement!!) but find myself thinking more of my Dad recently because of the situation I now have(or maybe its just 'reflections').

As to there  being more cases of Mesothelioma I think you are right in that our oncologist says that in general it can lay dormant for up to 60yrs before, for some reason, being 'triggered' into activity. Because my hubby has always been a smoker he was never surprised when the cancer first showed up but was told this had no bearing on his current diagnosis!!  Needless to say he still smokes (and consultant says if he enjoys it then it would be pointless to stop now and that he should do whatever he wants when he wants).    I think too that its only when there is a cancer in the family that you 'notice' it around you more.

Our daughter is holding a MacMillan Coffee morning on 26 September and we hope to raise lots of money for such a worthwhile cause.

Barbara

Most of my 'sleep deprevation' is caused by my hot flushes!! and also I have always only needed around 6hrs.  My hubby has low dosage anti-depressants (they felt it would help him cope when he showed signs of depression (not surprised) once he gave up work.  Its one of the biggest problems he has in that he 'lived to work' and so so misses this side of his life.  He told the therapist he went to see(arranged by consultant to try and get him to talk things through) that he would prefer to deal with things in his own way so that was the one and only appointment!  I am not sure if the tablets do help but then I dont know what he would be like without them either.  So many variables and no easy answers.  Take care and happy to listen anytime - it just sometimes help to 'get it down' and having the knowledge that others have some understanding.  Jules x