My husband was diagnosed with terminal pleural mesothelioma earlier this year.Since diagnosis it has spread quickly and he has begun chemo this week to try to slow it down.It is very hard coping with the emotional side of this disease. We do not know how long he has and is in so much pain despite heavy duty painkillers. Now he has the side effects of the chemo to deal with to.Does not want outside support, Any advice welcome.
I'm sorry to see that you didn't get a reply to this post, but I'm pleased to see that you've had some lovely replies on other threads.
There is a really good section about Coping Emotionally on our Cancer Help site. I hope it's of help.
Best wishes to you and your husband,
Cancer Chat Moderator
Many thanks for your response. I think a lot of people may not be aware of what mesothelioma refers to as we were told on diagnosis only about 2500 cases a year, probably les in the future as the use of asbestos is better controlled. Sadly my husband's father used it in the building trade and used to bring home off-cuts to make toys. Back then they were unaware of the risks. Its been a trying few days since his first chemo treatment to try to slow down progression but he has had his first meal in 3 days without being sick so am hoping the tide is turning and he will see some relief soon. It took a strong conversation with the receptionist at our GP today to get an appointment tomorrow on the advice of our MacMillan nurse as he needs to take anti-sickness for longer than planned. He gets reduced to tears when having to discuss his feelings and is then embarrassed. No matter that he knows its understandable he just gets more cross if I try and help. Think the frustration of being in a 'weak' state and not able to go to work has proved too much on top of the terminal nature of the illness. Of course, I am devastated too but I do not have to deal with the physical effects only the mental helplessness that I feel. Sorry I am rambling. Once again thanks for your response and referral to another part of the forum. Finding it very helpful being able to express myself without talking face to face. Regards Jules
My dad has recently been diagnosed with Pleural Mesothelioma in the right lung but also tumours in the lymph nodes next to his heart, they suspect this has come from somewhere else. I dont know what stage it is at the moment. He has another appointment today with the Respiratory Consultant and waiting for the Oncologist appointment to come through. I am supporting my mum as much as I can, I work full time and have 3 children and my husband works away from home. I have a brother but sadly him and my parents havent spoken or communicated for 8 years now and my dads wish is that I dont contact or tel him and my mum feels the same. I havent had contact off him for the same length of time now. I dont want to be bitter but I can see my dad's point of view as some of the threatening letters and accusations where horrendous, so I have resounded myself to the fact that sometimes things are best left alone, part of me feels he should be doing his share of the support but I dont want to upset mum or dad. My dad is angry all of the time, I suspect his reaction to the news. He has had pleural disease for some years in the form of COPD and Amphesymia (apologies for spelling). Some ladies on this forum suggested I contacted you.
My mam has asked me not to take any time off work as she said she will need me more when the time comes where she cant cope on her own. I know they will both have extra support of nurses etc, I am scared of seeing him fade away as at the moment doesnt seem too ill and has had his lung pleursed to stop the pleural effusions happening. I suppose I am scared of the unknown, so thought I would join the forum to be able to express my feelings. Thanks Regards Helen
How sweet of the forum to recommend you get in contact with me. I am happy to chat anytime you want as I am sure, like me when my hubby was diagnosed, you have questions, fears and frustrations and I found this forum a good place to offload during his journey with the disease. My hubby's situation differed in that diagnosis was a bolt out of the blue as he had been in good health until hit with a chest infection which would not clear up with antibiotics. The long and short of it was after three months of tests/biopsy etc he had the diagnosis of Pleural Mesothelioma, with palliative care as only option.
I can understand your Mam's reasoning behind taking time off work just now. My hubby felt the same and in fact I continued to work part time up until five days before he passed away. He was never angry (outwardly anyway) but due to the emotion it caused him, chose not to talk about it unless absolutely necessary and bore his illness with a quiet dignity for nearly three years. He hated not being able to go to work in the last two years of his life (he was definitely a workaholic and had always vowed never to retire so this was probably the hardest part of his diagnosis for him).
I really cannot say how your Dad's illness will progress. I have had differing stories along the way but nothing can change the way you both feel about each other and remember when he is angry, its the illness causing him to be this way. I too was very scared as to how I would cope but by taking all the support offered (both from family friends and professionals) we all did the best we could. What I can tell you that in our case my hubby never had to be admitted to hospital throughout his illness (he had palliative chemo to slow cancer growth down but only managed half the treatment as it was causing more problems for him to handle), I found some release by jabbering on the forum (and as you can tell still do!) and yes, he lost weight, struggled with eating in the latter stages and at times it was heartbreaking to witness.. His pain relief (when needed) was expertly handled by our local GP, hospital consultant/support workers and the district nurses were amazing in their support of me too. From somewhere I did manage to cope but you do not need to do it alone.
If you have questions, feel free to ask and I will do my best to assist. As regards your family situation as to your estranged brother I can only offer sympathy that you cannot have his support at this difficult time in your life but suspect that you would rather follow your parents' wishes in this respect. In time you may feel it necessary to contact him (maybe through a third party if needs be). I have no siblings but my adult children were, like you are being to your parents, a huge support despite their own emotions being overwhelming at times. You will cope even if you dont know where the strength will come just now.
My thoughts are with you all. Jules
thank you so much for your reply. It must of been so difficult for you both to have been given a diagnosis out of the blue and how you have coped is tremendous, I hope you are feeling much brighter and looking forward to the future as difficult as it is.
I think my parents have known it was to happen as he had pleural plaques caused through him working with asbestos but now its entered the lung, which they found in 2011 but didnt think it suspicisous so didnt investigate. They only found end of March that a 3 ltr pleural effusion was what brought it to light and a thoroscopy. Dad has always had repeated chest infections and treat with antibiotics so they didnt think anything different. My mam and dad wont allow me to come along to any appointments and having spoke to my mam today, they are taking my dad back in on Friday this week to put a permanent drain in as the pleuresed procedure hasnt worked. They have also confirmed that the multiple tumours in lymph nodes around the heart are from the Mesothelioma and not from another source. Mam said that the Consultant couldnt stage it, which I find difficult and wonder whether if I spoke or rang the Specialise McMillan Nurse she could possibly tell me. What they have said to my mam and dad is that in two weeks if he feels more poorly then he knows its progressed. I am not sure what to take from that and not sure if my mam has got her wires crossed. My dad was talking about Chemotherapy and my mam thinks he shouldnt. I am feeling upset as I have offered to take them to the hospital on Friday and have just been told a neighbour over the road is taking them which makes me feel like they are shutting me out.
Feeling helpless and not sure whether I need to just leave them be and let them contact me when they need to. The more I try to support the more like it feels they are shutting me out.
Thanks Jules x
I am so sorry this all seems to be happening now in a rush when your Dad has been dealing with underlying issues for some time. Its so much to take in. First and foremost I doubt very much that your parents are trying to shut you out but (wearing a Mum's hat here) suspect they are very much trying to protect you (no matter what your age you will always be their 'little girl'). By taking offers of help from others perhaps makes it easier for them to cope too.
Certainly MacMillan Nurse can talk to anyone in general terms but would only be able to discuss your Dad if he gave permission (I went through this with my hubby and in the end he agreed for me to go along saying it saved him having to discuss it with me - he could not cope emotionally with that side of it).
My hubby never had to have a drain so am unable to explain that side of things but would imagine this will help relieve his symptoms. As for 'staging' never discussed this and my hubby was too late to undergo surgery (mesothelioma can apparently lie dormant for up to 60 yrs - his was linked to asbestos toys he played with as a child). Chemo is a very personal decision and can be offered to try and slow the cancer growth down if the patient can cope with it. Certainly my hubby made his own decision and I backed him one hundred percent but there can be side effects for some which are difficult to observe and unfortunately he could not finish the course but what he did have gave us precious time together which I can never regret.
When the time feels right it may help if you sit with your parents, explain gently that to be able to cope and support them when they do need it, you would like to be involved now as you will worry much more if you do not know what it happening. My two children reacted differently (we are all different personalities) - my daughter needed to know everything (it helped her prepare) and my son (very much like his Dad) was quiet and I just kept him informed as and when I had updated news. This is of course my personal feelings and its not the same for everyone involved with a cancer journey. Your parents probably are still coming to terms with the changes that are happening now and I feel sure they would be heartbroken if they thought they were hurting you just now. One of the main things my hubby craved the most (and it was the hardest to do) was for normal life to go on as before because it helped him cope himself.
If you do need to speak to someone who can give you a bit more information on the medical side then a call to the nurses on this site (free from landlines and some mobiles mon to fri 9-5) could be useful link for you.
Needless to say I am more than happy (that sounds a bit weird but I know what it feels like to feel 'isolated from the reality') to chat as and when you want to offoad.
Hope they can help your Dad and keep him as comfortable as is possible. Sending a virtual hug (you will find lots of those on this forum). Jules
Its been a hectic few days, my dad has an infection in the site where they did the thoroscopy and cancelled his appointment for to have the permament drain put in until the infection has cleared. They took another 1.5lts off his lung Friday and said it is the most they can take and have said he will need to keep going back to have it drained until they can fit the drain in permanently on 22nd May. However the Oncologist has requested a kidney function test which he has to have on wednesday this week and she has said that once the drain is in and the infection has gone she wants a CT scan of his chest and abdoment.
My mam again asked on Friday what stage the Methoselioma was at and was again informed they dont stage it! I know this isnt the case so not sure how I can get around finding out as my mam seems to just be taking what they are saying on board that it cant be staged.
I am wondering whether they are suspecting that it may be in his Abdomen as they have never before done a CT of this area it has always been the chest. I know the Kidney Test is because my dad has hydroceles in both his testicles, and once fluid is drained off his chest, he says they also go down. I think he also must be having trouble passing water at times.
I have asked my mam to request oxygen for my dad to use at home, he seems in so much discomfort at the weekend when he was sitting in the chair it wasnt nice to see. The McMillan nurse asked the consultant if he could be prescribed some Morphine Tablets to help with the breathing but he said he no to use oxygen. My dad isnt bed ridden at the moment and can still maoevure around the house but finds the stairs more difficult for his breathing.
Thanks for your replies and help it does help knowing that the forum is here to help.
Your poor Dad has been throught he mill and I hope they can clear the infection quickly and they can carry out necessary procedure on the 22nd. It difficult for me to understand fully as my hubby only had palliative care for the three years after diagnosis (pain relief basically) and his condition deteriorated gradually until about the final six months. His breathing was an issue but he continued to climb two flights of stairs (our bedroom is in loft space) until around a month before he ended his journey, just taking his time (sheer determination!). He then moved into the spare room until a week before he passed away (we had hospital bed with pressure mattress for his last week in the lounge as he was still getting up to sit for a while and enjoyed being able to in the main room. It was also easier to keep an eye on him!!! We never discussed staging but at the initial appointment with his lovely consultant were told that Mesothelioma lays dormant for many years and the length of time you can live with it depends on the individual and their general health and sometimes palliative chemotherapy/radiotherapy can be used to slow it down. Hubby chose to have the chemo and I do believe it gave us longer.
My hubby had a varying array of different pain relief including morphine tablets and oral morphine (easier to take when swallowing became an issue but his oxygen levels were measured at his check up and were never low enough to require oxygen. Its such a varying disease but there are a couple of charities that may be able to give you more information, Mesothelioma UK and HASAG (both have websites) and there is also a section on the main Cancer Research site which I also gave me more knowledge.
Hopefully when the care co-ordinator gets on board they will be able to explain things a little more and as and when your Dad needs more help they can put this in place. My hubby had three monthly consutants appointment at our local hospital and was seen inbetween times by his GP - he drove himself up until the 16th December appointment after which he had home visits from community nurses who were fantastic.
I think I kept my sanity by being able to chat through stuff on the forum so never hesitate to post and I will do my best to help. For sure it is a difficult journey to be on with a loved one. Take care and sending virtual hug. Jules x
Thanks for your reply it is much appreciated and I will have a look on the websites suggested.
I hope you are feeling ok as I know it is early days for you too with your loss so you also will have good and bad days.
Take care of yourself x
Hoping you can get some guidance/advice as its always hard when you feel you could understand what is going on more if you have more knowledge to hand. the HASAG charity is one which is very close to my heart as when hubby was initially diagnosed his support worker (attached to the consultant) gave this as first port of call as they can deal with all the paperwork as regards the 'government compensation scheme' for those affected by asbestos linked mesothelioma. Their representative came to the house and more or less filled all the forms out at a time of great stress. In July they are holding a fund raising dove release which I feel is a lovely idea.
It was sweet of you to ask after me when you have plenty to deal with yourself. I am taking it day to day and have been managing reasonably well (few wobbles along the way which I fully expect and deal wtih as they occur but am lucky to have good friends/family support as well as still using my forum buddies) .Am also trying to keep an eye on Mum (in a care home) as she was none too bright at my last visit (she will be 89 next week) so life still has its stresses.
I hope the news is not as bad as you fear when your Dad has his appointment tomorrow(mouth problems were not something my husband suffered from as his growth was all within the lung linings) but do come and talk it through when you are ready.Just an idea but if his mouth is too sore to eat properly then ice cream can be soothing. Sometimes it just helps to write down your feelings with those not so emotionally linked to the situation. Will being thinking of your Dad and you all tomorrow morning (begin work at 8.30 and finish at 1.45 and then off on Friday - I am 'very part time lol').
Take care and all the very best. Jules x
take care Helen x
Hi Jules since my post my dad got took into hospital as his oxygen levels fell and he took poorly, he is still in hospital on oxygen and they are now going to look at him tomorro (thurs) to see what else they can do. I spoke to McMillan nurse and she said his methosiloma is extensive and around the pericardial (around heart) she says they can't say how long the dreaded time will be as she has known some people be diagnosed 6mths and gone on 12mths she says its down to individual.
My dad is getting dizzy when coughing and passed out in A & E as they didn't have his notes and asked him to take a deep breadth which he tried
He passed out. His blood pressure keeps going low and the returning to normal. Will know more friday.
Sound like you still have a lot on yourself with your poor mum. I suppose work keeps you occupied whether it's full or part time. Sounds like you really are keeping it more together and I agree talKing to people whether friend family of virtual buddies does help I'm finding it so helpful being on here talking to people who understand.
Hi again Helen
Sorry to read that your Dad is back in hospital but suspect at the moment its better that he can be monitored fully and get the care/pain relief as its needed. How is your mam doing. Do you have far to travel far to see him? Such a worrying time for you and the family . Hope Friday will bring clearer understanding for you all. Sadly its not easy watching a loved one struggling with any cancer and I shall always be grateful to have the understanding of others on the forum.. Keeping in touch with MacMillan (or Marie Curie nurses) would certainly help them realise you want to be kept fully informed (I found this was the only way I managed to cope with what we were facing as without that contact/information, I was too frustrated to think straight!).My thoughts are with you all. Hugs Jules
So sorry to hear about your situation, it is so difficult. My father was also diagnosed with Mesothelioma last month and has since been given a terminal prognosis. As a plumbing and heating engineer he was exposed to asbestos countless times throughout his life, unfortunately due to the nature of asbestos lying dormant in the body many others will be affected in the years to come. However, early detection of Mesothelioma before symptoms begin to show can increase life expectancy substantially. My family have started a petition appealing for anyone who feels they may have been exposed to Mesothelioma throughout the 90’s to be given regular screenings by the Government. Due to their refusal to acknowledge the dangers of asbestos throughout the 90’s, the Government now have a duty of care to those individuals who have been affected.
It may be too late for my father, but if we can help other families avoid the situation we are in and give them more time to enjoy life with their loved ones it would be a huge achievement.
Please click here to support the petition.
Happy to add my signature to this petition. Mesothelioma is nearly always terminal although with various treatments (if the patient is well enough) some patients have been known to survive longer than ten years if caught early enough so screening would certainly help in some cases. In my husband's case he was not immediately aware that he had been exposed until it was tracked back to contact through his father being in the roofing trade and bringing asbestos home for him and his siblings to play with as homemade toys! (his siblings are not affected). He was 60 at diagnosis and almost 63 when he passed away.
I hope you and the family have a good medical team and support network as you travel this difficult road together. Regards Jules