Dear Jules, I'm really sorry to hear about everything that has happened to you. My father was diagnosed with stage 4 misothelioma a few months ago and has had three sessions of chemo. There has been a good effect but he has decided not to continue with chemo because of the horrible side effects and doctors say that continuing with chemo won't really be worth it. They said he is likely to live six months at least  but this could be much more because he appears healthy and well other than a bit tired  I find it so difficult to cope and don't understand the disease at all  did your husband have chemo? How many sessions and what effect did this have? Was it from asbestos poisoning and is there anything you can recommend to help at this stage? Please help juk or anyone who knows about mesothelioma   Thank you  

Hi

Welcome to the forum though sad to read the reason behind your visit. My husband was almost 61 when he was given the diagnosis Mesothelioma.  His general health was good and his consultant recommended chemo to 'hold back' the cancer growth which he agreed to.  Like your Dad he only had three out of the prescribed six treatments as his medical team recommended he stop due to the side effects making him weaker than the illness at that time. We were never given a time line as it seems there is no set 'rule' with this disease and my husband's scans showed the limited chemo had slowed growth down which was a small bonus to him and the family. He was placed under the care of a palliative care team (hospital.gp and later community nurses) and even worked part time for a little while but the extreme tiredness took its toll and he stopped working.  His pain was monitored at three monthly appointments but never needed admission to hospital and survived for nearly three years after initial diagnosis. It is thought that his exposure to asbestos as a child (his father was in the building trade and made toys out of the stuff (obviously not aware of the dangers in those days) was the cause and he was entitled to an disability allowance which took away some of the financial pressures for him.

The biggest help to my husband (and we had to be guided by his own feelings) was to be treated just the same as before (he hated the emotional fallout and chose me as a go between with our adult children as did not wish to talk about it). As the illness progressed he spent most of the time indoors watching tv as his breathing/tiredness restricted him (though he refused the aids offered to help). He was able to continue driving until a few weeks before he passed away and it was hard for him to eat very much in the  latter stages of his illness so was on presribed nutritional drinks.

I am sure your Dad will be regularly monitored and if he, you or the family need support do speak to your own GP.  We were also put in touch with a charitable organisation called HASAG (they have a website) who helped us with the financial advice (the founders have first hand knowledge of Mesothelioma). There are a couple of different types of the disease and you will find some facts about Mesothelioma on the Cancer Research UK main site. 

If you have any questions, I will be happy to try and help and if you are in the Uk you can also ring the nurses Mon to Fri 9-5 on the number given on this page who I know will be happy to try an answer queries.  Regards  Jules

Hi

Welcome to the forum though sad to read the reason behind your visit. My husband was almost 61 when he was given the diagnosis Mesothelioma.  His general health was good and his consultant recommended chemo to 'hold back' the cancer growth which he agreed to.  Like your Dad he only had three out of the prescribed six treatments as his medical team recommended he stop due to the side effects making him weaker than the illness at that time. We were never given a time line as it seems there is no set 'rule' with this disease and my husband's scans showed the limited chemo had slowed growth down which was a small bonus to him and the family. He was placed under the care of a palliative care team (hospital.gp and later community nurses) and even worked part time for a little while but the extreme tiredness took its toll and he stopped working.  His pain was monitored at three monthly appointments but never needed admission to hospital and survived for nearly three years after initial diagnosis. It is thought that his exposure to asbestos as a child (his father was in the building trade and made toys out of the stuff (obviously not aware of the dangers in those days) was the cause and he was entitled to an disability allowance which took away some of the financial pressures for him.

The biggest help to my husband (and we had to be guided by his own feelings) was to be treated just the same as before (he hated the emotional fallout and chose me as a go between with our adult children as did not wish to talk about it). As the illness progressed he spent most of the time indoors watching tv as his breathing/tiredness restricted him (though he refused the aids offered to help). He was able to continue driving until a few weeks before he passed away and it was hard for him to eat very much in the  latter stages of his illness so was on presribed nutritional drinks.

I am sure your Dad will be regularly monitored and if he, you or the family need support do speak to your own GP.  We were also put in touch with a charitable organisation called HASAG (they have a website) who helped us with the financial advice (the founders have first hand knowledge of Mesothelioma). There are a couple of different types of the disease and you will find some facts about Mesothelioma on the Cancer Research UK main site. 

If you have any questions, I will be happy to try and help and if you are in the Uk you can also ring the nurses Mon to Fri 9-5 on the number given on this page who I know will be happy to try an answer queries.  Regards  Jules

Thank you so much for sharing all of this. My father is also very private and has not told any of his friends or his brother or sister. Do you have any recommendations for how to encourage him to tell people? How did your husband cope with the diagnosis psychologically? My father is very depressed at the moment (quite understandably). My father has gone back to work part time as well, how long was your husband able to continue working? 

Hi

My husband accepted his diagnosis quite well but did not like talking about it as it made him too emotional so I attended appointments with him and then updated our children, family and friends.  He preferred to keep things as normal as possible and this went well whilst he could work (he was an engineer and in the end was unable to continue as he troubleshooted around the world and it was too tiring).  He worked during his chemo treatment, just taking a few days off to recover and stopped work around a year after diagnosis. His pain relief was gradually increased and the fatigue meant he did not feel able to do anything much and once work was taken away from him he was pretty miserable. It was a very hard time for him and was pretty low in mood so had medication for this. We coped day to day and were guided  by his actions/needs and his medical team who were very supportive. 

I came to the forum for support and it was invaluable as it gave me somewhere to offload so that I could do my best for him.

I am sure your Dad will have his own way of wanting to deal with his diagnosis and maybe he will share this with you when he is ready.My husband's consultant was always encouraging  him to enjoy the quality of life he had whilst he was able to and we did out best to support him but on the whole he just wanted to be around his home and family so we managed this for him.  it was not easy for any of us but it must have been hardest of all for him.  Regards  Jules