My husband who is now 80, i am 75, was diagnosed with CLL about 10 years and remained in watch and wait for a few years until he became symptomatic 3 years ago. since then he has had 2 lots of chemotherapy (BR and Ibrutinib). He then had Richters transformation to non hodgkins lymphoma for which he has had R-Minichop, disease progressed during treatment. He then had Gemcitabine and Oxalipltin. No signs of remission with either although it is almost a year since his last CT scan He is now having PEP-C with GSF support. That is just background on his cancer journey.
During treatment he had extensive DVT and a PE so anticoagulated. He had a big bleed behind his retina in April and needed 2 operations to restore most of his sight. Anticoagulation stopped. He is an insulin dependent diabetic and uses 2 hearing aids as he is profoundly deaf.
My problem is that I am left to deal with all his problems, decide when he can have his PEP-c treatment, He has fortnightly blood tests and I am phoned to advise me on the GSF injections. He has had a chest infection for the last 4 weeks, GP preferring to prescribe over the phone...he was not actually seen until I insisted.
I am just so tired, I have recently been in hospital myself for 8 days with pneumonia and am finding it all a bit much. I really could do some input on any help we could access. It is just so difficult keeping track of and arranging all his appointments plus getting him to them. I have macular degeneration in both eyes so my sight is poor and no longer reaches DVLA minimum. Neither of us drive any longer.
Hi and welcome to the community; wow you have managed so well for so long and with the pneumonia it is not surprising you are tired. My first suggestion would be that you talk to you GP about getting a needs assessment for your husband and a carers assessment for you - this is normally the responsibility of your local council. If you ring the helpline here they may also be able to put you in touch with support services near you.
<<hugs>>
Steve
