Hello Rainbowdash,

I wonder if you might find it beneficial to have a chat with one of our team of nurses. They are available Monday to Friday 9am to 5pm on 0808 800 4040 which is free to call from a UK landline. be acc

There is a lot of information available on the internet some of which may not reliable. However we do have some information on mesothelioma on our Cancer Help web page.

Regards,

Jenn

Cancer Chat moderator

Hi Sorry to here about this i have seen this first hand if you need any help financialy there is help out the i can pass a number on if any one needs it 

Hi

So sorry to read what you are going through with your Dad.  My husband has this condition and only managed a short series of palliative chemo (half of what had then  been planned) due to his body not coping well with the side effects.  There does seem many different rates at which this cancer takes hold and our consultant was very frank with us.  We have, however, been lucky in that we are now over two years on from diagnosis and support has been there when required.  Currently we are trying to keep his enegy levels up (almost impossible) by supplements in the form of shakes (available on prescription) as he manages only small amounts of food.  I so understand the feelings/emotions attached to 'watching' a loved one suffer from this disease and any time you need to chat the forum is a judgement free way of offloading (they get used to me doing it when I go into panic mode, usually when symptons change).

If you are using the 'web' to source information make sure you stick to reliable sites like this one or MacMillan as unfortunately there are some mixed messages on the not to good ones.  Hope you can chat to the nurses here who will be a mine of information and know where to find support/advice etc.  Best regards Jules54

Hi Jules, thanks for you reply.  I have seen some of your posts and I'm so sorry for what you and your husband are going through.  My dad had a CT scan this week and the next stage will be discussing with his oncologist how the cancer has progressed if at all.  Your husband has done amazingly well to have controlled his disease for 2 years.  Thats really incredible. Has your husband found any foods he likes?  My dad is struggling mostly with dinner at the moment.  He takes Oramorph and an anti-sickness tab around hafl hour before he eats but can still only manage very little.  The list of foods he won't eat is far longer than those that he will.  Mostly, he just has an Ensure.  Its so hard watching him push his food around the plate.  He does really try, he knows he has to eat but cannot tolerate most smells, textures and tastes.  Does your husband sleep a lot?  I think my dad had symptoms long before he went to the doctors and was already falling asleep at odd hours.  Currently, he gets up around 10am and is asleep again at 11.  Everything wears him out.  Even getting dressed and brushing his teeth.

Thanks again for taking the time to reply, its nice to know there's someone out there who (unfortunately) knows what we are going through.  Take care

Hello Im so sorry you are going through such a terrible time .I lost my darling husband to mesothelioma last Feb2013 we had been married for 40 years .He was diagnosed in Oct 2010 and passed away at home one day after his birthday ..Fatigue and nausea were the biggest problem once pain relief was sorted he had been on 24hr home oxygen for the last year and had to gointo hospital to have fluid drained from his tummy the week before he died but came home with a care package ie carers  came in 3 times a day as I couldt manage to lift him up the bed and Marie Curie nurse came for the last two evenings .Although before he went into hospital I had been caring for him for 24hours a day as he was just to week to do anything I must admit I was run ragged I sat up some nights with him as I was so worried .He did pass away very peacefully In my arms thanks to our wonderful family GP I miss him terribly .I do know how hard it is for you and hope you have lots of help and support ,Just remember this is my experience .and every one is different I will be thinking of you look after yourself please come and chat when ever you need to ...Susananne

Hi there Susananne.  Sorry to hear of your loss.  Such a terrible disease.  Your story also fills me with positive thoughts though as your husband lived with the disease for over 2 years.  It sounds like you did an amazing job caring for him. Thank you for sharing with me that your husband passed peacefully, that is also a great worry of mine.  I intend to do all I can to support my parents through this terrible time and your stories are really helpful.  I hope you find some peace and have plenty of good friends and family to support you. Thanks for your time. x

Hello again I didnt mention my husband had chemo and radio therapy to hopefully give him extra time I wondered if your dad has had any treatment ..Hubby started with a cough which didnt get better so our Dr gave him antibiotics they didnt help so he had an exray which showed fluid build up and he was admitted into hospital where he had his lung drained and a biopsy taken which showed Mesothelioma ,when he came home district nurses came in 3 days a week to drain his lung then it was reduced to twice a week until it stopped then he was told he hadstage 4 k idney desease caused by the chemo drugs his kidneys were working at 13 percent and we thought he would need dialysis but then the blood results that were done weekly showed they stayed at 18 percent which was apparantly ok .As you know the desease is caused by asbestos my Tony worked as a pipe lagger in the 60s for 6 weeks so its a horrible desease that lies there waiting to come alive years later ..How is your mum coping she is lucky to have such a caring  daughter and will need to support each other and accept all the help she is offered .I hope you can all try to enjoy the weekend and that the weather is kind to you .Take care ....Susananne x

Hi

Sorry I missed your post (had forgotten to click on appropriate message!!).  My husband's appetite has changed during his journey with this cancer.  Currently he says he eats because he must but rarely enjoys it.  The chemo killed his taste buds and nothing has really been the same since.  He still manages good bowl of cereal for breakfast, usually small slice toast at lunch and a 'toddler-sized dinner though the last meal of the day really varies as yesterday he managed several slices of chicken, two roast potatoes and a tablespoon of runner beans.  Other nights it will just be milkshake.  No two days are the same and I gave up trying to give him choices as it seemed to make it harder for him.  I now serve up and hope for the best and as he does not like talking about his illness with me, it really is 'luck'.  The weight has been falling gradually and then about two months ago suddenly half a stone had gone.  A lot of this is muscle wastage as he refused to do the exercise his oncologist recommended and he basically just sits in a chair all day (just recently acquired electric 'movement' cushion for anti pressure though he does not like this either).  He can walk short distances and still managed two flights of stairs twice a day (our bedroom is a loft room and so far he does not want to move down levels but the time will inevitably come). His consultant/support team have been great with advice/recommendations but  he is not one for 'listening' and does his own thing  as wants to deal with it in his own way.  Hard to watch - definitely - his choice - totally respected.  He gets 'snappy' when I remind him to drink but so far has been free of hospital admissions.  When my husband was given 'short spell of holding chemo' we also had the services of a dietician but at the end of the day the sufferer is the only one who knows what he wants to eat and I learnt the hard way not to force it!  I do however keep a large bowl full of favourite sweets/chocolates (chocolate mints and soft jellies current favs) which he can delve into whenever (consultant said to get us many calories into him no matter how unhealthy!! and ther'sme having to watch my intake due to high cholesterol tendency - we have his and her sides to the fridge .  Snacking seems to be a good way to get extra in or just smaller meals more times during the day.

Sleeping (I wish I could!!) is something he does most of the day on and off. Usually up between 9 and 10 (to take meds) then usually sleeps after his breakfast and then on and off throughout the day/evening.Does not get to bed to the early hours - always has been a night owl.  Fatigue is a major side effect of Mesothelioma and we were told this from the outset but its still a struggle to witness.  Cancer Research UK does has have section on Mesothelioma which may be worth a read if you have not already done so.

How are you keeping?  Its hard but do try and keep some normality (whatever that entails) in your life when its possible as it helps cope on the not so good days and my husband prefers me to get on with things (garden has been my 'out' during the summer months along with friends and our children's support is invaluable).

Sorry for the ramble but just want you to know the forum is here any time and its a good source for offloading (as you could probably tell from my own thread).  Take care  Jules x

Hello Susananne. Great to hear from you. Yes, my dad has accepted the chemo although they told him it would only buy him a couple of months. He's been scheduled 7 doses and is due to have dose 4 next week. However, I have to say, we've not seen any benefits to the chemo as yet. His first dose made his mouth so sore. It was blistered, bleeding and so full of ulcers he could barely speak or swallow for a week. He's also had a blood transfusion recently but had chemo again the next day so we didn't see any positive change from that either. My dad is currently being and feeling sick quite a bit so my mum is going to give him his anti sickness meds 3 times a day now instead of once in the evening. Will also see his oncologist next week to discuss the latest CT scan so big week for us next week. Mum is coping well, although I sensed she was near to tears today so I had to pull myself together as when one of us goes, the other follows and my dad doesn't like us to cry around him. Take care and it's lovely to chat to someone on here x

Hi Jules. Your husband does sound at quite a similar stage to my dad although my dad certainly can't manage stairs anymore and as I said, now sleeps downstairs. However I suspect my dad is older than your husband and also had underlying health issues eg type 2 diabetes before the Meso was even diagnosed. I bought some sweets for my dad after treading your reply and ann hoping if we can get on top of the sickness he might be tempted by a jellybaby or two? I am also looking at the bag of maltesers I bought as I'm sitting here looking after him and they are making my mouth water!!! I've been here for an hour now. My mum has popped out and I'm here to watch him. So far he's slept the whole time. It's so hard looking at his frail, weak body. Can't believe 4 months ago he looked so different. Thanks for speaking with me. All the best to you and your husband x