Today is a day of uncertainty. I am very short of breath and Mark thinks I am anaemic as all the signs point to this. However, I have not heard from Dr M and am not due to visit the hospital until 2.45 tomorrow afternoon. Normally if I require a transfusion, I am telephoned in advance and I go in early.
I know that Dr M has been in contact with BUPA about a drug which is being used in America but in this country is not yet used for lymphoma. It may not even be licensed yet; I am not sure. He sent a report to them and asked me to add my request to the insurers who are considering whether to give approval. Certainly my neck is very swollen on both sides and nothing is working.
We need to go to the hospital before my appointment in order to find out about my mother. I understand that the endoscopy which is proposed goes deeper than the normal one which many of us have had and this may be the reason why they decided against the treatment the first time around. Unfortunately, they didn’t talk to us; they just left her hanging around waiting. We are in a similar situation again in that she has returned to hospital with the same problems as before and is waiting to be fitted in for the procedure. However, we need to talk to the medical staff to find out exactly what they plan to do, the risks of treatment and the risks of doing nothing. Very importantly, we need to know whether all this has been discussed fully with my mother.
As I can’t visit the ward, hopefully Raymond can see her tomorrow before or after I see the oncologist and he will be armed with questions for the staff as well as for my mother to see. She cannot keep being discharged only for the same problems to recur which have not been investigated.
We so much enjoyed having Jonathan and Anna with us at the weekend and are both really missing them.