We had a great weekend as Jonathan came down on Thursday, worked in Southampton on Friday and stayed with us until Sunday. As Anna was here for some of the time the house was full with their warm, vivacious personalities. On Saturday we celebrated my mother’s 97th birthday – what an achievement!
On Sunday later afternoon we went with Jonathan up to his flat to stay overnight as we had an early start at the Marsden. Josie cooked us a delightful meal but we went to bed early as we were both tired. We managed to get to the Marsden for 8.15 and I had my blood taken for testing in the Transplant Clinic. We arrived for the PET scan at 8.55. Unfortunately, they had double-booked the 9.30 appointment and although I had arrived first and early, they decided to go ahead with scanning the man even though I had to get back to the Transplant Clinic for my appointment there. I didn’t get back to the Transplant Clinic until 12.30 p.m.
We saw Dr Potter who suggested increasing the anti rejection drug, cyclosporine, and possibly seeing a dermatologist regarding my skin which is very red and fiery. Apart from that my blood counts are good and improving. Then I was due to have my pentamidine only unfortunately, it hadn’t been ordered from the pharmacy so I had to return at 4.00 p.m. It meant we started our journey homeward rather later than we had anticipated and as we crossed the border into Hampshire the sky darkened and it came on to rain.
And now I wait for a phone call. This is a crucial scan and my life is on hold until we get the result. I can’t settle to doing anything. Years ago I would just have died from lymphoma but I have had quite a few narrow escapes in my life from which I would have died in years gone by. There is hope of a cure but I have to wait and I am not a patient person.