I am so very sorry for your loss.  It is okay to grieve, to feel anger and even disappointment, please know that you are not alone and that everyone is here to listen.

Hi

Was saddened to read the reason for your joining the forum but hope you find some solace in sharing your story here and as its a very friendly place am sure there will be others along to chat. I am the wife of a someone who also has terminal mesothelioma (diagnosed Feb 2012).  Sadly after only 3 sessions of chemo his body was too frail to take more treatment and he is now under the palliative consultant team with regular check ups for pain relief.  Has been experiencing breakthrough pain for last couple of weeks but has check up Tuesday. So far no hospital admissions but sadly aware this battle cannot be won.

Sending condolences on the loss of your husband and do come and chat when you feel we can offer support.  Cannot yet begin to know how you are feeling as you grieve for your lost loved one but certainly know how hard the journey you have been on will have been. He was a very lucky man to have you by your side for many wonderful years.  Take care Jules54

Oh Susanne,

Thank you for having the courage to join this great site. I can feel your sad loss through what you have written. It must be so hard for you. But I would just repeat something someone said, Just because we have lost someone, It doesn't mean that love had died for true love never really dies. You could not have done more for Tony but I know this may be small consolation, but you were there for him right to the end.

Anytime you feel the need to talk Susanne I and others will do all we can to help and support you. Please take you sending best wishes your way, Brian

Dear Suzanne I.m so sorry to hear what you are going through and sending love and prayers to you .I do hope you can find some kind of conection on this forum just to say whatever you want to get off your chest x stay well x Tonic x

Thankyou for your kind message im so sorry your husband has this awful illnessTony was diagnosed in Oct 2010 he had 9sessions of chemo and 8 radio therapy sessionsthe last 5 were to maybe help with pain which they did to start with then he was put on pain relief patches recomended by mac millan nurse they did work well Tony was on home oxygen and portable canister when we went out .Christmas day was the last day he was able to come dowstairs he got weaker by the day in January he had to go into hospital to have fluid drained from his tummy he went down hill so quickly is was so awful to see him so ill he was able to come home after 2 weeks he was with me for 6 days carers came in for last 3 days to help 3 times a day to help lift and turn him on feb 4thFeb his birthday, Dr came and he put in a syringe driver  and an injection to keep him calm on the 5Feb he passed away peacefully in my arms I am lost without him hewas the love of my life my rock he was everything to me he was a lovely husband I was so lucky to have him I want him back x

Hi Susanne

You were your husband's rock in his cancer battle and thank you for sharing your story.  I have not come across many with mesothelioma on this site but have 2 acqaintances who have already lost the fight against it.(both in under 6 months).  On diagnosis my hubby's consultant said he was incredibly healthy apart from the cancer!! which could help him survive longer.  So far its his walking that has been affected the most.  He has a lot of muscle wastage since the weight loss during the 'holding chemo'.  He agreed to that treatment as it was hoped it would buy him longer but the suffering he had throughout the three sessions despite them trying so many anti-sickness drugs was worse than the pain he was then suffering.  Even talking about the chemo sessions now (6 months since they finished) still results in him feeling sick (needless to say I stay away from the subject).  It is so hard watching  a once healthy man (despite being a smoker which the doctors said had no bearing on this asbestos related cancer and they basically said he may as well enjoy it whilst he can!!) reduced to just being able to spend the days sitting in a chair watching tv.  I am very grateful to the lovely people on this forum who are keeping me company through my journey (keeping me sane I think).  As yet I am not being a 'carer' in the true sense as he is still able to look after himself, drive the car and does occasionally pop into work to give training sessions (hates  not being able to be hands on engineer due to lack of strength).  As I sit here typing he is laying on the floor (more comfortable) and is sleeping following a few hours with friends. He tires easily but a lot of this tiredness is the side effects of the painkillers but as you know he would not be able to manage without them.  The cancer is causing chest/back pain/disfigurement so pretty sure we will have to discuss new meds when we go to hospital on Tuesday. There are so many possible scenarios as to how this will progress but know so many different problems can arise so just hoping to be able to face them as and when they rear their ugly heads(how can you plan ahead when you dont know how he will feel day today).  We still accept all invites and hope we can go(so far so good).

It is lovely that you are offering support already to others on the forum despite your own heartbreak and hope you receive more support back. You have been through a harrowing journey and hope you have lovely family and friends helping you through your grieving process which again is such a personal journey..  Take care  Jules

Hello again I wondered how your husband contracted his mesethelioma my Tony worked for Darlington insulation lagging pipes for 6 weeks in the 60swith no protection its so awful he was so brave never complained his biggest problem was feeling sick tiredness and fatigue and pain and breathlessness he was in hospital with a blood clot on his lung new years eve 2012 he was seriously ill then then again when his immune system was too low because of the chemo oh god he was brave and I was falling apart inside I didnt let Tony know I had to be strong for Tony he didnt want to know anything about his illness but said if I wanted to find out about it I could he trusted that I would do the right thing and I know I did everything I could to keep him safe but I still couldnt keep him that B cancer got him ,sorry I wont moan on you must be strong and enjoy all the time you have together ,must just say we  I have 4 children who miss there dad too  Do you know friends and family ask how I am I say ok I want to say i feel awful but how can I xWill speak soon x

Hiya

My  hubby's mesothelioma contact goes way back to his childhood.  His dad was in the building trade and used to bring toys home made from asbestos.  Lets face it in those days no one knew about the affects. No blame can be laid anywhere. IT is what it is and we have no control over the consequences. Support is all I can offer and I have been very up front with family and friends. Once diagnois was known everyone was told and when people ask how it is I tell them the truth as dont see any point hiding away. I am the talkative one and hubby prefers not to talk to anyone including me (frustrating at times). I have a good supportive network at work who can tell by my face if I need a hug on the down days.  We have two children, a granchild and another due in October - very exciting indeed and as they live nearby we see them most weekends as they just drop by unannouced and the four year old keeps us all smiling.  Life in the last 16 months has changed inevitably and will continue to make demands I hope I can live up to.  My late Dad (passed away 5 years ago with prostate cancer with secondary in lungs) always said where there is life there is death so make the most of life.  Well we will do what we can to make each day count.  We have cried together, apart and no doubt will continue to do so but on the good days normal life is almost there with us visiting friends/family and I am learning to put up with all the repeats on tv and his sci fi programmes.  We both have laptops and the forum is a great source of support for me but not something my hubby would entertain though he knows I joined and occasionally I picked up tips re diet/side effects etc which has helped along the way.

Well best get sorted ready for work tomorrow and fix late night drinks so will say goodnight for now. I did in and out of the site most days and am happy to chat any time. Take care.Jules

Hello Jules  I hope you and your husband had some good news today and could help with the pain your husband is having  I know only to well what you are going through and will be thinking of you big hugsx

Thanks Susananne,

Happily the consultant went through a couple of alternative drug cocktails for hubby to experiment with to see if that helps. There are lots of different concoctions available.  He began the 'try out' today for one week and can switch to alternative next week if needs be (basically additions to current slow release meds, to act as top up).  He also has an appointment coming for a one to one chat with a therapist to try and improve his understanding of how to cope with the fact that  he can not longer do the job he loved which leaves him so frustrated and bored and unable to show much interest in day to day life.  They are trying to help him enjoy his current quality of life whilst he still has is which is a move in the right direction.  Generally his health, weight  and mobility has been stable for the last three months.  He goes back for check up in 2 months to ensure discomfort is being managed.  The NHS support and his palliative team spent an hour with us both which was, I feel, very rewarding.

How are  you managing  as I am sure what you are going through is far worse than how things are with us at present. I hope you find the forum as friendly as I have. Its a good place to chat and off-load both good and bad feelings as despite being 'virtual strangers' the understanding  of the cancer community is amazing.

Take care and thank you for asking about us.  Jules x