Hospital Update: Shifting Focus

Today, the Haematology department was in chaos. The waiting rooms were both full.  There were patients in the corridors.  I counted only 3 doctors and they didn’t seem to be making any headway with the backlog of patients. BUT… this worked out well for FL, because instead of seeing a grumpy stressed doctor for 5 minutes at the most, he was diverted to the Macmillan cancer support nurse, G, who gave him / us a good 20 minutes of one-to-one attention.

When G drew me aside and asked me if FL would be happy to see him instead of a doctor, I have to admit my heart sank and I assumed the worst.  I thought we were going to be told his treatment was over and… yeah.  And I do still wonder if there was an underlying element of preparation in this appointment.  A shift of focus from purely clinical chemical intervention to a consideration of the palliative options?

Because FL’s numbers continue to worsen. Although this month’s increase is much smaller than last time, it is still going in the wrong direction.  G was keen to hear about how FL was feeling, and because it was G-The-Compassionate and not the doctor, FL told him exactly how it has been:  the all-consuming fatigue, chronic constipation, loss of feeling in his feet, and the general sense that he is gradually becoming less well.

And G listened and asked questions and listened some more, and then offered FL a host of new possibilities to think about.  Would he like to attend a fatigue management course at the local hospice?  How about an appointment for a free foot and leg massage?  A free podiatry appointment?  How about G talking to the doctor and asking to vary his dose of steroids so that he has less of a crash on a Friday / Saturday / Sunday?

And the answer to all of these suggestions was: “Yes, please, why not?”
Because FL is ready to try anything to improve his quality of life, knowing as he does that when they DO stop his current treatment, there isn’t another drug left on the menu, so he needs to get himself in the best possible place mentally as well as physically, just in case this is the top of the slippery slope.

The Numbers:
Last month:
FL’s Freelite score had gone up to 93 (from 35.7 the previous month and a “steady” 30 something for the several months previous to that).  We were previously warned that if the magic number hit 100, he would be taken off the chemo regime.

His kidney function was also showing a gradual deterioration, with creatinine measuring 131, compared to 126 the previous month, 122 before that… all the way back to 97 in November.
His blood was showing elevated calcium levels.

This month’s update: 
Freelite score up again to 96
Kidney function “no worse than” last time.
Less calcium in blood (this is good)
Liver function “suggests he had a glass of wine last night, but definitely not 16 pints of beer”
Indications of an allergic response to something – could be hay fever?

Another blood sample sent off to Birmingham for the Freelite test.

Another appointment next month.
Keep taking the tablets.
And actually – this is all manageable.
We are fine.