Day 69 - Stem Cell Transplant
After coming out of isolation on Monday Jimmy enjoyed a relaxing day in high care yesterday. A nice change from being isolated to being able to hear and see the goings on in the ward. Although his spirits still seemed a bit down he had a nice shower after I got there and did a couple of stints walking from one end of the high care ward to the other. He is getting out of bed to go to the toilet and he sat sitting up nicely for most of the day. He enjoyed a deep sleep while I was there too and looked so much more relaxed.
Dr Fine had told us on Monday that if he didn't spike a temperature they would take down his antibiotics yesterday but he did unfortunately get a temperature during the night on Monday and this was stable for yesterday and still fine this morning so they have now taken him off the antibiotics. He seems to be coping without 2 of the nausea meds too. If his temperature plays ball today and during the night tonight then he will be DISCHARGED TOMORROW morning. His temp was fine all morning and then just as I was getting ready to leave at 2pm it did go up slightly so I am keeping everything crossed that it doesn't go any higher. His weight has also remained the same since Monday afternoon.
Jimmy's appetite is definitely getting better, still not eating as much as he should but he is eating more than he has been. The food in high care looks far more appetising than in F4 isolation ward and it is also not heated up to death. He was a bit more talkative today and had another sleep while I was there and he is not staring into nothing as much as he has been. I asked him this morning if he thinks he is feeling a bit down and he said he is but the biggest problem is that his mind is in over drive and he can't turn it off, he says he just keeps thinking about all things cancer related all the time. I think coming home and being in a different environment with the normal day to day stuff going on will do him good.
Jimmy's white blood cell count is still at 1.6 which Dr Fine says is fine for if you are in hospital but she went through a couple of the things that we need to know for his home coming. He will be given an appointment date to see Prof Novitzky on the day of discharge for about a week later and if everything is going well and there have been no problems then he will have his Hickman line removed a day or two later. His first month at home is vital that he does not get an infection and he is at high risk for this as his white blood cells are still very low and will take a while to come up. He is not allowed out and only minimal visits from friends and family and anyone that does come and see him cannot have been in contact with anyone that has a cold, sore throat or tummy bug etc. Or that works in an environment where they are dealing with a lot of public and come into contact with someone who might have been sick without knowing it. This also goes for people working in jobs such a teachers and creches, doctors reception etc etc. He is not allowed to come into contact with children. For the first week he may still not eat anything that has live cultures like Bulgarian yoghurt, mushrooms etc. He is allowed some fruit and it has to be things like a banana which is inside a peel and he can have an apple but this must be peeled. Dr Fine says it takes about 3 to 4 months to recover from the chemo and for his body to build itself up again as his stem cells are all still very young but the fantastic news is that Jimmy will see Prof again in about a month and they are quite sure that he will be able to return to work after this appointment.
So....all good, positive news. The things that Jimmy and I are most looking forward to is the change from being at the hospital every day for the last 51 days and starting Monday morning we will enjoy his morning walk around the block and slowly build this up again, having dinner together in the evenings and just think, I might even be able to moan about the toilet seat being left up again.
2015/03/11
2015/03/09
Monday, 9th March
Day 67 - Stem Cell Transplant
We had the best news today!
At 8:30am Jimmy sent me a message to say that I need to get to the hospital earlier this morning because they are moving him to high care and I need to pack his bags. This is the best news I have had in a long time. So off I rushed to pack up all his things. Three bags after being in isolation for 49 days. Half of it I packed and put in the car to bring home because I seriously doubt he is going to use any of it in the next week if he hasn't for the last almost 2 months.
They put a mask on him and wheeled him through to high care while I went down to the car and the porter took his laptop bag and personal things and then I came back up and met them in high care. Jimmy was supposed to be booked into one of the isolation wards in high care but he begged Mr Brown to be in the big ward and Mr Brown kindly obliged. There are 2 other patients there at the moment that we know from the chemo clinic so it is quite nice for Jimmy to see them again. They are both in with Pneumonia.
So now Jimmy has to get up as much as possible and build his strength back. He is allowed to take a walk with me down the passage outside high care as long as he has a mask on and during the quiet times. He has to get up to go the to toilet too. Dr Fine explained that his body is using all its resources to build up all these extra cells and he should be eating more than normal to keep up with the demand when in fact he is hardly eating at all. He has lost another kg. She said it's not as important for him to weigh what he did when he came in (as long as he doesn't go any lower) as they look at the trend but the problem is that the trend at the moment says he is losing weight. If he doesn't spike a temperature by midnight then they will take down the antibiotics tomorrow and he has to go 2 full days without getting a temperature or else they will put him back on the antibiotics again. They are also going to stop 2 of his nausea meds tomorrow to see if this might help his appetite.
Some more good news is that his white blood cells are slowly coming up. They were 1.6 this morning (normal is 4 to 11). Dr Fine is over the moon with his platelets and HGB count. His platelets are 60 (normal is 150 to 400) and his HGB is 9 (normal is 13 to 18). She says this is very good news because they were expecting him to have to come back daily for platelets and blood transfusions once he gets discharged. She says it is no uncommon to come back for months for platelets but Jimmy has had a sudden rise in these two since Saturday.
It's still difficult to say when he will come home as they will monitor him from tomorrow without antibiotics and the nausea meds but the rest is up to Jimmy now. It really is very difficult because I know he is feeling down but he needs to be strong now and push forward. I sometimes feel like he has given up but maybe it is difficult for him to get out of this kind of rut that he is in. 49 Days is an awfully long time to be in hospital, away from home comforts and the people you love.
We had the best news today!
At 8:30am Jimmy sent me a message to say that I need to get to the hospital earlier this morning because they are moving him to high care and I need to pack his bags. This is the best news I have had in a long time. So off I rushed to pack up all his things. Three bags after being in isolation for 49 days. Half of it I packed and put in the car to bring home because I seriously doubt he is going to use any of it in the next week if he hasn't for the last almost 2 months.
 |
| This is one door we are closing, never to open again. |
They put a mask on him and wheeled him through to high care while I went down to the car and the porter took his laptop bag and personal things and then I came back up and met them in high care. Jimmy was supposed to be booked into one of the isolation wards in high care but he begged Mr Brown to be in the big ward and Mr Brown kindly obliged. There are 2 other patients there at the moment that we know from the chemo clinic so it is quite nice for Jimmy to see them again. They are both in with Pneumonia.
 |
| Goodbye isolation |
So now Jimmy has to get up as much as possible and build his strength back. He is allowed to take a walk with me down the passage outside high care as long as he has a mask on and during the quiet times. He has to get up to go the to toilet too. Dr Fine explained that his body is using all its resources to build up all these extra cells and he should be eating more than normal to keep up with the demand when in fact he is hardly eating at all. He has lost another kg. She said it's not as important for him to weigh what he did when he came in (as long as he doesn't go any lower) as they look at the trend but the problem is that the trend at the moment says he is losing weight. If he doesn't spike a temperature by midnight then they will take down the antibiotics tomorrow and he has to go 2 full days without getting a temperature or else they will put him back on the antibiotics again. They are also going to stop 2 of his nausea meds tomorrow to see if this might help his appetite.
Some more good news is that his white blood cells are slowly coming up. They were 1.6 this morning (normal is 4 to 11). Dr Fine is over the moon with his platelets and HGB count. His platelets are 60 (normal is 150 to 400) and his HGB is 9 (normal is 13 to 18). She says this is very good news because they were expecting him to have to come back daily for platelets and blood transfusions once he gets discharged. She says it is no uncommon to come back for months for platelets but Jimmy has had a sudden rise in these two since Saturday.
It's still difficult to say when he will come home as they will monitor him from tomorrow without antibiotics and the nausea meds but the rest is up to Jimmy now. It really is very difficult because I know he is feeling down but he needs to be strong now and push forward. I sometimes feel like he has given up but maybe it is difficult for him to get out of this kind of rut that he is in. 49 Days is an awfully long time to be in hospital, away from home comforts and the people you love.