meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
[u]Day Twenty Two (Day Eighteen)[/u] The Day Our Hopes Were Raised
Phil's neutrophils were up to 0.4 and there was a rumour he may be allowed home on day twenty three. Phil stopped taking the extra Adcal today as his calcium levels have returned to normal.
[u]Day Twenty Three (Day Nineteen)[/u] The Day the Neutrophils Hit 0.5
Phil's…[Read more]
meganjane replied to the topic I look like Smeegle…gulp(Gollum) in the forum General 11 years, 10 months ago
Hi Peggy,
I hope you were released from hospital today and that you are now back in the comfort of your own home. Remember to take it easy and not rush into doing too much.
Megan
meganjane replied to the topic Harvesting for SCT in the forum Treatment 11 years, 10 months ago
Hi Peter,
The one thing Phil has used the most since he has been in hospital for his transplant is a radio. Phil finds it hard to concentrate enough to read or watch something but the radio is a nice distraction in the background that you don't have to focus on too much unless you want to. It also make the room feel less lonely when you are…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
Hi Vicki and Colin,
My posts are no longer everyday because the last bit of the transplant seems to be just a waiting game for the numbers to go up, Phil is still having the GCSF injections every day but luckily, so far, he hasn't experienced any of the pain Colin got towards the end of his transplant. I am also finding I am more tired now I…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
Hello Chris,
I will be keeping a close eye on Phil when he gets home to make sure he does not overdo it. I was just saying to Phil today that there is no point spending all this time in hospital and finally getting released only to end up having to go back because you try to do too much too quickly. Luckily (?) the weather isn't that great so…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
Hi Tom,
I am thinking of smuggling the IV stand home with us as I think Phil will miss it (not!) but we could use it as a coat stand 🙂
Megan
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
Hi Helen,
We are definitely looking forward to some trips to the south west this summer! We have spent the last two days discussing what we are going to do to our house now that we are staying in London and it has ranged from just decorating to a full on refurb including moving the stairs, knocking down walls and extending into the loft so we…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
[u]Day Twenty (Day Sixteen)[/u] and [u]Day Twenty One (Day Seventeen)[/u]
More of the same. Phil is ready to come home now, he is tired of his windowless room and he is tired of hospital food. The funny thing is the evening of Day Nineteen Phil was offered a room with a window but he decided not to move, he didn't want to risk any germs that…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
[u]Day Eighteen (Day Fourteen)[/u] The Day the Prof Arrived
The Prof was doing ward rounds today so Phil got to speak to the head man himself. Professor Cavenagh answered all of Phil's questions so we now know that the magic neutrophil number we need for Phil's release is 0.5. The other blood counts also need to high enough and they need to…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
Hi Tom, Jean and Frank, Vicki and Colin,
I do find it helpful to post as it allows us to sum up each day and when things feel like they aren't getting any better Phil and I can look back at previous days and see how far we have come. It is nice for the neutrophils to be rising although they aren't in a hurry, still 0.1 today, but at least the…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 10 months ago
[u]Day Seventeen (Day Thirteen)[/u] Hair No More
When I left Phil last night he had hair, today he did not. There is still a little bit left on the top of his head but effectively it is gone. We had been told and had read that all of his hair would fall out. We thought everybody has a different reaction to things and Phil had lost some hair…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Helen,
Myeloma twin, I like that!!
It is amazing how annoying an inanimate object can be but the IV stand is the most hated thing in the room, luckily it has spent all of today in the corner unused.:-)
Megan
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Tom,
So far the infection seems to be getting better so fingers crossed he will stay healthy now. The doctor seems to think he may be let out by the middle of next if his counts carry on in the upward direction.
Happy New Year to you and your young bride Elaine.
Megan
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Sarah,
It is amazing how different the same procedures can be. We find it even depends on which nurse or doctor you have on any given day so even within the same ward things are different!! Phil and I do stay positive and it is partly due to reading about people like Henry who are a bit further into the journey and are in remission. It is…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Jean,
It is definitely a roller coaster ride but 2013 has started off right with the neutrophils finally making an appearance!! Does Frank have a date yet for his transplant? I know every journey is different but hopefully Phil's experience will help others including you and Frank know what to expect, I know we learnt a lot from reading…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
[u]Day Sixteen (Day Twelve)[/u] – New Year, New Neutrophils
Phil had some aches and pains in his legs last night so he hoped it was a sign that the engraftment of the new cells was happening and the GCSF injections were finally helping the bone marrow produce new cells. Sure enough, the blood tests this morning showed that the neutrophils have…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
[u]Day Fifteen (Day Eleven)[/u] – A better day today
Phil's fever broke around lunchtime today and he has started to feel better. The lab grew a culture of the bug he has and it is in his system, not in the PICC line, so that is good news. It is a bog (pardon the pun) standard gut bug that the doctor said Phil has probably had for years but…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Babs,
I hope the forum doesn't mind my daily updates (this thread is getting a bit long!) but Phil and I both have the worst memories and we thought this way we would be able to remember what happened when – we don't even remember what day Phil was diagnosed, we just know it was the last week in May!! We both also found reading other…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
[u]Day Fourteen (Day Ten)[/u] The IV Stand Returns
The upset stomach that Phil has had for six days went away today but that is the only good thing that happened.
Phil started the day feeling not quite right with a fuggy head, he had a similar thing yesterday but it went away after a couple of hours. Today it got worse and his…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 11 months ago
Hi Chris – Sorry to hear you had a Christmas day visit to the hospital, I'm sure that wasn't on your Christmas list! We do know what you mean about set backs, just getting to this stage has involved quite a few.
Tom – Phil is definitely not rushing, the IV stand made a return to his room today so it was only gone 24 hours:-(
Kay – you are…[Read more]