Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Needing hope

Jocoju
Posted by

My mum was diagnosed with malignant pleural mesothelioma in April this year. She has yet to start treatment as she wanted to have a holiday abroad before starting. She is 69 years and otherwise fit. She has recently become more tired and a few more pains when yawning. She had the talc procedure when diagnosing her. We have just started her holiday abroad and feel so sad to think this may be her last one. This disease has appeared from the very beginning to have no hope and that’s what gets me the most. That when trying to keep spirits high, my heart is telling me that hope isn’t willing to give us much.

I look on the meso news daily for good news coming - this is such an unfair disease and hate it for what it will take away.

Just wanted to know how others have tackled this journey. 

hurtandconfused981
Posted by

Hey jocoju,

Even though you've probably read that pleural mesothelioma can be very vicious like every cancer it really varies from person to person.

My Dad has what they consider at the moment to be "stable" or "very low grade" mesothelioma which has only manifested through one nodule on his pleura. It'll be coming up to a year since he felt ill in September and he's still mobile and enjoying his life. They are now keeping a watchful eye on him with regular CT scans and x-rays as a way forward. He hasn't even had chemo yet and will not start it until it shows some significant movement/growth.

I really do relate to what you're saying because at first my head was in a lot of different places with it. The only advice I can recommend is to treat it like any other disease and take it day by day. Try not to put dread into it because a positive mindset will help more so. In my experience we crack jokes about it with one another - saying Dad is so boring he's put it to sleep. It's just our way of coping.

I hope this helps. We're all here to lend an ear if needed.

roni2008
Posted by

Please read my profile.  Take each day as it comes and good luck to your mum.

Jocoju
Posted by

Thank you.

I will read it and thank you in advance for sharing your story.

Jocoju
Posted by

What a wonderful post to read. Just what I needed.

Thank you  

Jocoju
Posted by

Thank you for your reply - it is lovely to receive such a positive post. 

Glad your dad is stable at present and hope he remains so for a long time yet.

i have positive and negative days. We have come away to have the whole family together - which is truly wonderful and we are doing our heartfelt beat to ensure it is full of laughter, life and lots of hugs. 

Just find myself breaking down at the end of the day thinking too far ahead and knowing the muddle that must be my mum’s mind, though does not show it. 

I wish your dad and your family well and hope you are cracking jokes with him for many years yet.

Laurioska
Posted by

Hello sorry to hear about sad news , my dad got diagnosed with mesothelioma after waiting 6 months. He is 60 years old. I wondered how is your mum doing? My dad is awaiting chemo but also having g second thoughts about it as according to his consultant it's only 5/10% of it working. At what stage is your mums ?

Thanks 

Jocoju
Posted by

Hi Laurioska,

Sorry to hear about your dad too.

it took 7 months for doctors to diagnose my mum and as it was relatively early - stage 2 and didn’t have many symptoms decided to leave chemo and  trials until now so we could all have a wonderful summer holiday which we did.

Mum has now started to feel symptoms of the disease - pain in side and shoulder, getting very tired and had nerve pain shooting up her shoulder into her neck.

Had an appointment at Barts hospital last week for Mars 2 trial - they have said she is stage 2 and is starting chemotherapy this coming week - 2 cycles then she will be randomised for surgery or not.

Doctors and nurses who she is now with are wonderful and so important to have - just knowing we are in very capable and confident hands help us all a lot.

Any pain has now been helped by a very low side of pregabalin and its now just the tiredness that has really hit her. Need to find a way of getting that back! 

Good luck to your dad and I certainly didn’t hear that chemo only had 5/10% of working. Fingers crossed.

:)

flower52
Posted by

My husband (a fit 68 year old) was diagnosed with Pleural Mesothelioma in April, 2018, stage T3 N0 M0.   Went on to the Mars 2 Trial on 8th June, 2018.  After two rounds of chemo the tumour had shrunk by about 50%, he was not selected for the operation but had a further four rounds of chemo, but the tumour was still the same on completion of chemo.   Two further CT scans and tumour is still the same.   At the moment he is fit and well, still manages to walk 6 - 8 miles most days.

Good luck to everybody fighting this terrible illness.

Jocoju
Posted by

So pleased that your husband is doing well - 6-8 miles a day, that’s wonderful. My mum has always been so fit and full of energy, it’s the tiredness and energy zapper that is so noticeable to us all. We hope that the Chemotherapy can help zap the tumour and give her some of the energy back. It is such a wonderful site, if we all spent our time living off the google searches, we wouldn’t know about what real people are managing to do with this awful disease.

I hope my mum can also get some good results with the chemotherapy.

Best wishes to your husband and hope the walls continue for a long time yet.

 

onthego
Posted by

Hi Jocoju, I hope this will help you a little bit. I was diagnosed with this cancer In October last year. I am still here fighting this condition. I know it is a fight I cannot win, but I will not give up easily. I refused chemo which could not cure me. I have a POSITIVE attitude to all this and will still do as much if not more that I am now able to still do. I get very tired very easy. I get told off by my family for doing it, but I have self satisfaction. It is too easy just to give up and watch the tv. I see the pain my wife and family are feeling but there is nothing you can do but love and help your mum if she needs or asks for help. Do not assume she cannot do things for herself and lose her independence.

 I hope this has helped in some way. feel free to contact me

hurtandconfused981
Posted by

Hi onthego,

Thank you for the two posts you made in the other threads. It's great to hear from people who are fighting this disease and just get on with life. Positivity does wonders.

I'm curious and you don't have to answer if it is too much for you. Have you had much disease progression in the last year? My dad has had symptoms of meso since exactly almost a year to this date though it took a while for diagnosis. His is stable or as we call it "asleep" at the moment and has shown no growth on repeat CTs - his next one is next month.

Other than fatigue and breathlessness he doesn't really have many other issues. He has that horrid hacking cough (they seem to come and go almost like 'attacks' for an asthmatic) but that's about it. He even managed to put on weight the last few months because he's been enjoying all the naughty things he shouldn't eat! He has quite the sweet tooth!

We find that day to day we forget that he has cancer. Life goes on and we keep doing things as a family that we would always do together. It's the best way to approach it we find rather than letting it hang over our heads. It really seems to do the world of good for him and for us.