Well we saw the haematologist yesterday - only an hour late - but an hour is a long time for someone who is feeling very unwell. I tried to distract him by spilling boiling tea on my leg and all over the floor when the lid came off but all that did was give me a sore leg! Also I was on the receiving end of a (deserved) tirade of abuse in the car park. I dropped him at the entrance then went in search of a parking place. I was feeling very anxious about the appointment and wasn't concentrating properly so I drove over a zebra crossing when 2 people had stepped onto it. There was no danger of me hitting them and I know I should have stopped but I did wish they might have considered that I wasn't having a good day!
Anyway the Dr said there were 3 possible reasons for the anaemia. 1. premature death of red blood cells but the blood results did not suggest that this was the problem. 2. Iron, folic acid or vitamin deficiency - he said he would have these results later in the day and would phone us if he needed any supplements. No phone call came. 3. Infiltration of the bone marrow - no treatment apart from blood transfusions and whatever the oncologists can offer. They could offer a bone marrow biopsy to confirm this but wasn't convinced this would be necessary. Knowing that bone marrow biopsies are not very pleasant I agreed with David that it was probably worth passing on this.
Hb was 8 so he said another transfusion was needed but because we were at a different hospital we would have to contact our hospital to arrange this. What a joke - they are 'sister' hospitals in the same Trust with equal access to records etc. Anyway so we called our usual hospital before setting off home and they said an 'action form' hadn't been completed but they would look into it. Today has found me chasing them up and at 3pm the form has still not been done, our consultant and her registrar are both on leave and the form has been left with a covering doctor. So with Friday being a Bank Holiday it looks as though he won't get the transfusion until at least next Tuesday allowing for cross matching time. Very frustrated!!
We came away from the appointment in silence and he has been very flat in mood since. He feels awful, very lethargic and shows no interest in eating so I am just presenting him with food and he does eat a little. When we got out of the car yesterday his jeans just slid down to the tops of his legs but he denies losing any more weight! He came downstairs today at about 11.30 - quite early for him - but didn't make it back up for a shower till about 9pm. Really struggling on the stairs. Wish we had a downstairs bathroom. We have an outside loo which is ok if it's not raining.
I have tried several times over the last few days to get him to talk properly about how he's feeling but it's a losing battle. Both the GP and the hospice nurse have commented recently about him being a very private person and not wanting to talk about his feelings. I will keep trying and he knows I'm there to talk if/when he's ready. He did say that he assumed it was bone marrow infiltration and what did I think that meant. I couldn't answer because I genuinely don't know but did agree with him that that is probably the case. I do usually try to look on the bright side, at least for his sake, but I needed to be completely honest this time.
Just as an added extra my daughter came down with a nasty D&V bug on Monday. I was woken to discover the bathroom needed a thorough clean up - not good news for someone who is not a morning person! I have been keeping them separate and madly nagging about hand washing and disinfecting door handles, running up and downstairs with drinks/ice lollies and cleaning out sick bowls. So I'm still working despite getting another certificate from the GP!
We soldier on....
Rosy