Mesothelioma

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

Help and Advice

AngelshellR
Posted by

Since my dads diagnosis of advanced mesothelioma on 1st February I am feeling in limbo and just don’t know what to do, everything seems so complicated and difficult and when I phoned the hospital today asking about a follow up appointment the palliative care nurse said that people with advanced cancer don’t normally have one!!! I felt totally gutted and was left thinking that my dad is just another statistic. 

I am traveling every day after work to visit my dad and I’m exhausted emotionally and physically but don’t say that to my dad as I’d hate to upset him as it’s not about me it’s dad who needs my support. 


Someone told me that we could get a benefit by completing a DS1500S form which my dads GP practice have done for us, I thought they sent it out to wherever it goes directly but they called me today and said I would need to post it off myself. I explained that I don’t finish work in time to get there before closing as it’s 45mins drive but they are not willing to send it out to me. I’m thinking that it’s not worth bothering about as it’s added stress that I don’t need right now. 


I honestly thought that there would have been some signposting as to where to get help when my dad was diagnosed and to say the least I feel a little let down by the professionals involved in his care. 


I have been so strong since my dads diagnosis but today I just broke down in tears and felt so so sad. Think I just needed to share my feelings and get things off my chest before I go to sleep. 

Chezdouglas
Posted by

Dear AngelshellR 

So sorry to hear of your dads diagnosis and having to go through such a bad experience. 

Where do you live? my husband was diagnosed last June with plural and peritoneal Mesothelioma, we live in the South of England, when diagnosed he was seen by a oncologist who sent him to have chemo then ex-ray in 6 weeks with CT in 3 months. We have been allocated a nurse who we can contact with any worries .. she has been a life saver.. you did not say what kind of treatment your dad is having or if he is being seen by a oncologist.. this is very important to make sure he is getting the right treatment, there are also trials you can get info about. 

We were given information to contact Has-ag to see about claiming for compensation ..don’t give up, your dad deserves the best treatment and care.


Praying for you and your family take care 

Cheryl x

Beancountess
Posted by

Please ring the Mesothelioma UK helpline (0800 169 2409) as soon as possible

.  They can put you in touch with all the right people to help you through this and make sure your dad gets the help he needs.  I don't know where you are but there are 18 specialist nurses around the country who can help you, although you are better if you are nearer to one of these.  

myosotis
Posted by

So sorry to hear of your Dad's diagnosis.My husband had a diagnosis of stage 4 mesotheliama in October. A McMillan nurse was present and gave us a card for a solicitor with Irwin Mitchell. The solicitor came to our house and took all work details but unfortunately could not find a link. If she had she would have pursued a claim for us free of charge. However she did deal with all the state benefits under the 1979 law. My husband has received a lump sum and a weekly tax free allowance. This is substantial and could be put towards anything extra your Dad needs.

You don't say whether your Dad's cancer has advanced away from the pleural lining.In any case your Dad need to be referred to an oncologist promptly. Chemotherapy can certainly help and also in my husband's case helped to control the pain. You don't say how old your Dad is but there is a tendency sometimes to write older people off. You certainly should not accept this. You need to fight all the way for your Dad.

I know from my own experience how very hard this is for  you and you have all my sympathy

AngelshellR
Posted by

Thank you so much for your support and advice, I’m really struggling physically and emotionally right now. My dad is 75 years old and the consultant who delivered my dads diagnosis said that there was no treatment available due to my dads health as he has acute kidney failure and is dialysed 3 times a week. When I asked if it would spread to other parts of his body I was told no. I really thought that there would have been some kind of follow up. 

My dad lives alone and I go over almost every day, recently he has had spells of being very angry and can say hurtful things to me on the phone, I couldn’t drive over today as roads are so dangerous and he was really ranting on the phone. I don’t react to this but it’s so upsetting and I’m trying my best. Everything is just so difficult and I’m the only family he has, I’m a strong person but starting to fall apart. 

I really thought that the hospital or GP would have recommended some kind of professional support for my dad as he’s so depressed. He has carers in morning & bedtime but no one to speak to him or offer the help he needs. 


myosotis
Posted by

I can really empathise with your plight. Your Dad says hurtful things because its his way of dealing with the terrible things that are happening to him. It doesn't mean he loves you less.

I can see that your Dad has other medical problems.You mention a consultant . Is he an oncologist? What provision has been made for pain relief?

Why not contact McMillan Nurses? They are wonderful and not only can they answer you questions but might have suggests on how your Dad can best be cared for.

Meanwhile is carers must take care of ourselves too.

A big hug from me. You can ask for friendship from me if you wish  so that we can message privately

Patte65
Posted by

Hi

I really sympathise, when my Dad was diagnosed in October last year we were told there was nothing that could be done as he has ischaemic heart condition so they could not offer operations, chemo etc.. The consultant was extremely caring and the lung nurse specialist supported us to.

However, he had a few ups and downs and was given a pleural catheter and now the district nurse calls every other day to drain off 500ml of fluid - this has been going on for 7 weeks now - so a lot of fluid has been drained off.

Dad has also lost muscle, weight etc., and is very frail and weak but still at home as he has my mum.

Each day his mood is different which I know can be upsetting but I promise it is not personal to you it is his way of coping with it all.

I would recommend contacting the MacMillan nurses too as they helped my dad at the start before the district nurse took over. They are lovely, caring and supportive. Especially with him on his own I think this would be the best. They can support you too. I on many occasion phoned the support line and twice have spoken to nurses about my dad and they explained why he could not have any further treatment.

I honestly think this will help you so please call them they are wonderfully caring and helpful.

Take care of yourself - its really important to.

rosief
Posted by

When my husband was diagnosed with Mesothelioma in July 2016 we were advised - at our local Mesothelioma Support Group - to contact Macmillan. They were wonderful and sent one of their team out to our house. She advised us on all the benefits we could receive and helped us fill in some of the forms. Within a few weeks we had a Blue Badge and started receiving the benefits due. Do ring them

Rosie x

J