[u]Day Thirteen (Day Nine)[/u] Freedom from the IV stand
When the nurse came to change Phil's IV fluid bag this morning she said she would check with the doctor if Phil needed another one. The answer was no so after days of being attached to the IV stand Phil has now regained his freedom and even better it was needed somewhere else so it has even left the room. One step closer to home!!
Megan
Hello Helen,
You are so right, if we look at it like that this is not day thirteen it is actually day 217!!! We are definitely on the home straight! 🙂 🙂
Megan
Hi Kay,
Thanks for posting, it is nice to hear from some one else who was treated at Bart's, now we know the lack of blood result info is normal, it doesn't make it any easier not having a daily print off but at least Phil knows it is not just him! 🙂 The plan from day one was to move Phil to the Bodley Scott Ward which is the mythical transplant ward we have heard so much about but there were no beds available before Phil went into isolation so he is on Ward 4A next to the Day Clinic. I am sure there is really no difference between the two!
Megan
Hi Tom,
Phil will be jealous – a board in your room with your results written up daily? At this stage Phil would just be happy with a piece of paper slipped under the door!! I think the biggest problem is that Phil has still not made it to the actual Transplant Ward, there is such a bed shortage that Phil is still on the general haematology ward. As he is now in isolation I assume he will not be moved so we may never actually get to see the mythical transplant ward, we have built it up in our imaginations so much now that anything less than paradise will be a disappointment if we ever do set foot in it! 😀
Work went surprisingly well as everyone was still in Christmas holiday mode, a nice easy day to ease back into some normality.
Megan
Day Twelve (Day Eight) – Good news and bad news that is actually good news
After asking every day since he was admitted Phil finally got to see his blood results today (the computer seems to be down a lot!). This is the good news as Phil likes to know exactly what is going on and he has found it hard not knowing what his blood has been doing.
The bad news is that Phil has been neutropenic since at least Boxing Day (this does beg the question where the doctor got the reading of 1.3 for neutrophils that we were given yesterday?) but this is actually good news as the only way now is onwards and upwards. When Phil was told yesterday that the neutrophils were dropping but still at 1.3 it was a bit depressing as he has felt so rotten since Monday he thought that maybe it would get worse as his counts had not dropped all the way. It may be psychological but now that Phil knows his counts can't go any lower he is feeling quite positive.
The saline and potassium drips continue and the only other development is that Phil was put on antibiotics yesterday as he has developed a rash. Luckily the rash is not too itchy so hopefully the antibiotics will clear it up quickly.
Megan
Hi Vicki,
So sorry Colin had to visit the hospital yet again, it just doesn't seem fair, you finally get him home and then he gets sick and at Christmas! Hopefully his bloods pick up quickly now he is on the tamiflu and antibiotics. I also hope you recover quickly, there are so many germs going around at the moment, I feel like I should wear a mask on the tube and most of my team were coughing and spluttering in the office today, it makes it a pleasure to go into Phil's isolation room – the one place in my day that is (hopefully!!) germ free. 🙂
Megan
Hi Tom and Jean,
It appears I jinxed Phil by writing a 'starting to improve' post as two hours later he threw up for the first time, hopefully it will be a one off!!
I am trying to make sure I get enough sleep but I am a bit like a naughty child, there is no one here to tell me to go to bed so I don't 🙂 I am back at work tomorrow for the first time since Phil went into hospital so I think I will be in bed early tomorrow night, I just hope I stay awake at my desk!!
Megan
[u]Day Eleven (Day Seven)[/u] Starting to Improve
Phil's upset stomach that appeared on day eight is still with him but is getting better so hopefully the corner has been turned. Phil's neutrophils are still dropping, today's reading was 1.3. There was a brief improvement in the neutrophil levels on day nine but the doctors said this was due to the GCSF injections that were started on day eight, a false dawn of sorts. The injections are due to continue until day fourteen so hopefully by then the neutophils will start rising?
Megan
[u]Day Ten (Day Six)[/u] More of the same
We knew Phil would be in hospital for 3 to 4 weeks but when you are living your normal life a month can pass in the blink of an eye but when your life becomes reduced to a single hospital room (with no windows!!) the time can drag a bit. Day ten is very similar to days eight and nine but I had to look back at this thread today to work out when Phil went on his saline drip because for Phil it feels like he has now been on it forever….. Each day that passes though is a day closer to Phil coming home so we look forward to the day I can enter the room without gloves and apron and Phil is allowed out to see the sunshine (rain) again. At least Phil is not missing a glorious spell of weather and the ceiling in his room is not leaking yet 🙂
Megan
Hi Ozzy,
Phil and I have discovered throughout his first line treatment, stem cell harvest and now the transplant that things are very different depending on the hospital. Phil's first line treatment was on the PADIMAC trial and even this seems to be different depending on which participating hospital you are treated at. The general idea is always the same but the details do differ quite a bit! Phil is hoping he will get to the "things getting better part" soon. It hasn't been as bad as we expected but it hasn't been pleasant for Phil either. Fingers crossed Phil will soon be on the mend but we know it takes time.
Megan
Hi Helen,
Glad to hear you had a proper Christmas, Phil is losing the weight but I seem to be piling it on. The last time he was in hospital for the leg operations I was such a nervous wreck I didn't eat anything but this time we knew it was coming and knew what to expect and I find when I get home I can't be bothered to cook a proper meal for one so instead I just snack!! When Phil gets home I will need to feed him up and curtail my own calorie intake 🙂
Megan
Hi Vicki,
It is quite funny, I was soooo desperate to get Phil into a single room and away from all the germs and now he is all by himself I worry because unless someone comes and opens the door nobody can see him!!! I keep saying to Phil when I leave to ring the bell if he needs anything. It is funny how I veer from one extreme to the other and all of the extremes are a bit unreasonable. The care has been excellent but I just don't seem to be able to settle down and trust that it is okay when I am not there. It is not like I can actually do anything medical but I suppose it is normal reaction to the situation. 🙂
Megan
[u]Day Nine (Day Five)[/u] Christmas
A bit tough for both Phil and I today as there is no public transport on Christmas day so I was not able to visit. Note to myself, I must get over my fear of driving in this country!!!
Phil is doing okay but he has now developed a rash that they think might be a side effect of the other drugs he is on, they will give him another drug for this:-D
Phil is still not interested in food and has lost just over eight pounds so far so they are going to start monitoring what he is eating to ensure he is getting enough and then get the nutritionist involved. Phil and I both hope that once he gets over the dashing to the toilet stage his appetite will come back as he has not lost his sense of taste yet. So far the mouth washes (and maybe the ice chips during the chemo) have kept any ulcers and soreness at bay.
The saline drips continue to keep him hydrated and the current drip he is on also has potassium and something else in it to keep his bloods at the right levels.
Phil had quite a few calls and texts today (a lot of them from me!!) so he has not been too bored and he remains upbeat.
Megan
[u]Day Eight (Day Four)[/u] Isolation Begins
Phil is now not allowed to leave his room but luckily I was able to tell him the truth and say he was not missing anything outside, cold, raining, miserable and grey. I have to wear a plastic apron and gloves now when I go into the room which is a lovely fashion ensemble.
Phil is starting to feel the effects of the chemo but he remains in good spirits. Phil will have an IV bag of fluids tonight to make sure he does not become to dehydrated but he is still managing to eat a little bit at each meal and he had a protein shake and an ice cream this afternoon.
Megan
Hi Jean and Frank,
Phil has never been told anything about phosphate levels but I do know they checked his potassium levels after the harvest as a side effect of the harvest can be a drop in potassium. Sorry I can't be more help but I hope the medicine will fix the levels and maybe improve the tiredness?
Megan
