Yesterday we went to Southampton General Hospital for my chemo. I was put in a side room with an en suite so it meant Raymond could be with me most of the time. This was fortunate as 12 minutes into having an infusion of rituximab I collapsed. I have had this drug before but the lymphoma has moved into a different class, blastic mantle cell lymphoma which is much more aggressive. I started feeling very sick and flushed. I got up with Ray’s help to go to the toilet and collapsed. Ray pressed the nurse’s call button but no one came.
Apparently the call button merely activates a light outside the room rather than at the Marsden where it actually buzzes until someone comes to the patient’s aid. I was unconscious for a while during which time Ray called out to reception where someone told him that the nurses had gone for a cup of tea. However, apparently after that the emergency routine was activated and soon there were six people in the room including the registrar.
The drug was stopped and I rested while various questions were asked. Treatment later restarted with the drug being infused very slowly. Gradually it was speeded up so I didn’t have to stay overnight. I would have been afraid to as Ray wouldn’t have been allowed to stay and I didn’t have much confidence if an emergency were to happen. They are all very nice and caring but having seen the watchfulness of the Marsden I am not as confident.
My oncologist rang this morning to say that he will not be continuing with the rituximab which he does not believe is very necessary, so this means I can have the next chemo at home. I find it safer at home as a nurse is with me all the time and still has the equipment at hand if anything goes wrong. I have been warned that things will get worse before I get better and I must contact the hospital about any side effects, not just of the chemo, but my very low blood count. I may have to go into hospital for transfusions of blood and/or platelets. I just wish I were nearer to the Marsden.
Dr M also told me that the lymphoma had spread to the bone marrow which is what we had all expected so it is probably pretty well everywhere, hence the decision to give chemo. He is likely to arrange for another scan in two weeks and has asked me to monitor progress of my neck so he can see if this particular chemo is working. If not he has already arranged with BUPA for me to have another chemo regime which is not yet licensed in the UK. He is certainly doing his best for me by being very pro active. I have had lots of lovely messages from family and friends which are a source of encouragement to us all.