Husband’s Pain & Frustration

Hi Wardyboy my husband was diagnosed last October at 64 like your husband was exposed to asbestos in the 70s while working as an electrician.He was offered immunotherapy and had 2 doses then had a scan and was told it wasn’t working he was then offered chemo which after discussing with oncologist and McMillan nurse he decided not to go ahead with it. He is currently on Zomorph,pregablin,oramorph solution and uses medicated plasters Ralvo lidocaine at bedtime which he can keep on overnight. He also takes 2mg dexamethasone (steroid) daily.though it’s not great to use steroids long term his consultant and nurse are happy to keep him on this low dose as it has been keeping him well since January and stopping the nausea he had been having for months. My husband is virtually pain free and enjoying going out for meals etc again, we have even booked a weekend away next week. Can you not ask his nurse to increase zomorph as my husband has been told this will be an option for him  anytime if pain increases . Hope your husband gets help he needs as this is a horrible disease and so hard to come to terms with as it should have been avoided.

Thank you Bey - I will certainly get him to mention the patches as the nighttime seems the worst time  - he is up every couple of hours.  Apart from the pain he seems well, he has no cough & no breathlessness.  We are hoping the Immunotherapy works but we know there is no guarantee.

Do you have access to a hospice? My husband sadly passed away from pleural mesothelioma in May aged 63 but his pain was really well managed by the amazing team at the hospice and they adjusted his medication until they got it right. Wishing you both all the best as know how hard it is x 

Hi Rai - so sorry for your loss.  We don’t have access to the hospice as yet.  He is quite newly diagnosed & should have had his second appointment  at Wythenshawe Lung Centre tomorrow but this was cancelled yesterday as consultant on holiday - now being seen 26 July. He has spoken to Meso Nurse who has suggested some increases in meds as he has been started on very low doses - so hoping this works.

Take care  xx

Rai, sorry to hear about your husband. Thankyou for information on your husbands pain relief been managed at least that is reassuring as that is what my husband has been anxious about.

It might be worth going through your GP to see if you can access the hospice as my husband was under them from the beginning so his pain was managed quite closely by them. 

Such a horrible illness so my heart goes out to you both x 

I think it's the unknown from both yours and your husbands perspective that is the worst feeling I found. Sending love and strength to you both x