This topic contains 105 replies, has 18 voices, and was last updated by 
meganjane 11 years, 1 month 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 be sure the infection is under control. The course of IV antibiotics Phil is on for the infection runs for ten days but if there are enough signs of improvement and all the other blood counts are fine Phil may be released before the course of antibiotics is done and switched to an oral antibiotic instead. Professor Cavenagh also said that the melphalan is one of the best chemo treatments for knocking back the myeloma so hopefully Phil's paraprotein will have been knocked down a few more pegs. Phil's neutrophils rose to 0.2 today (day eighteen).
[u]Day Nineteen (Day Fifteen)[/u] The Day Phil Sees the Light
After thirteen days where Phil has not left his windowless room he felt strong enough today to go outside to the courtyard for some fresh air. Phil sat in the weak sunshine for 15 minutes but at least it was not raining!:-D
The IV stand made a brief appearance this afternoon as Phil needed another transfusion of platelets as they had dropped back down to 8. The neutrophils have dropped back down to 0.1 but the doctor said it was normal for them to fluctuate before they started to rise properly. All of Phil's blood counts were down today except for the calcium levels which have finally returned to normal. Phil will need to continue taking the extra Adcal for a few more days to be sure the calcium stays where it should be. Phil is due another Zometa infusion so the extra Adcal will probably be needed.
The only side effect Phil has noticed from his low platelet count is feeling tired (or maybe I should say more tired?) and his gums sometimes bleeding a small amount when he brushes his teeth. When Phil receives the new platelets he has an itchy sensation but that soon passes. The nurse did warn us before the first transfusion that sometimes people can have a reaction but Phil has not had any major problems.
So far Phil has not had any problems with his mouth, between the ice chips during the melphalan and the special mouthwash he has been given it seems to have kept any sores and ulcers at bay.
Megan
Morning Megan and phil
I tell you that stand is a Buger to get rid off ha ha, but it wont be long now before you see the back of it.
Re the bleeding after brushing teeth? well I hate to admite it but when I was having mt SCT when moth and gums got sore I never brushed but used Plenty of mouth wash a bottle used to only last me two days at a push he he, every time i went to the Loo (and that was often) I mouth washed when i was bored I mouth washed when i oh you get it now dont you ha ha.
Doing Good Keep it up
Love Tom Onwards and Upwards xxx
Hi Megan!
Great news that Phil has been outside. A small step but a giant leap….
It may be irrelevant for Phil now but in case useful for the others – when my hair was falling out a lint roller was very useful (available in John Lewis!)
Sending this on my phone down in Cornwall so will keep it short. It must feel far away now but you'll be having trips away from London before you know it… And you appreciate them even more!
Helen xx
[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 had been missed in the cleaning of the new room so now he can no longer complain to the staff about the lack of a window!:-D I am taking in sandwiches from the outside world to give Phil and bit of variety in his food. The problem with being in the hospital so long is you get back round to the first menu again and it is no better the second time!
Phil ventured outside again today for some fresh air but he has commented on how much muscle he has lost already, he feels like he needs to learn to walk again. Phil has decided when he gets home he will try and take a short walk each day to build up his strength again.
Phil's neutrophils were up again on Day Twenty to 0.2 and up to 0.3 today so they are on the move in the right direction. The platelets are still a little low though so Phil's old friend the IV stand rolled over to his bed this afternoon for another platelet transfusion.
Megan
Phil should count himself lucky that he only has an IV stand to cope with (only joking). I had to carry one of those 24 hour pump things for sickness out to the loo with me every time – and as others have remarked that was not infrequent. Managing pump, drip and bed pan all in the confines of the bathroom was no easy task!
Sounds like you will be home soon Phil but don't get over enthusiastic about walking. Just listen to your body and stop when you feel tired. I sometimes got tempted to do too much and regretted it afterwards (lovely wife muttering 'I told you so' in the background).
Chris
Hi Megan
Your ears must have been burning today…..we were talking about you and Phil and the ups and downs of sct! The neutrophils are at least on the way up…..and fresh air, wow. Colin felt really weird when he came out of hospital so it's good that Phil has got a little taste of the fresh air early!
The food, gosh Colin remembers that well….that was our only complaint with the nhs, rubbish food! Even I got fed up of the sandwiches offered to me, shouldn't be ungrateful but it was the same choice very day! So I see where Phil is coming from! I do hope Phil is allowed home soon, but it's such a bitter sweet pill…..not home too early or you end up going back the same day like Colin and I did!
The neutrophils do go up and down, our sct nurse told us this. Colin's went down last Wednesday to 0.2! I nearly had a melt down…..all the other bloods are ok, so just letting you know it is a bit of a roller coaster, but a pleasant one because your loved one is at home :-). Hope you are looking after yourself too Megan 🙂
Vicki and Colin x
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 may need quite a few trips away to avoid the building work!!
Phil found a clothes brush useful for getting the hair off his clothes and pillow and he even used it on his head 🙂 I took in proper hairdressing scissors today so the last few wisps are now gone.
Enjoy Cornwall!!
Megan
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
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 it will be easier to stay curled up on the couch nice and warm inside.
Megan
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 am back at work, I am trying to look after myself and I have managed to stay germ free!! I have also finally cleaned the house top to bottom so that is one less thing to worry about, I have stocked up on wipes, sprays, bleach and gels so our home is now ready for Phil's return.:-)
Megan
Hi Megan and Phil
Don't nick it just take a photo of it,cos if you nicked it you would only bump into it at night he he.
Doing good you two keep it up
Love Tom xxxx
[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 neutrophils reached the magic number today, 0.5!! The Prof was doing the ward rounds again and he suggested Phil come off the antibiotics and be monitored overnight to ensure his temperature did not spike again. This is a sensible plan but it is a bit of a blow as although we tried not to get our hopes up yesterday we thought today Phil may have been able to come home today. Maybe tomorrow??? Phil's Haemoglobin level has dropped again and his Platelets are back down to 19 so he may need more blood tomorrow before he is allowed home, if he is allowed home (must not get my hopes up again)!!!
Megan
Megan and Phil
0.5 hooray hooray hooray.
It's a b when you think they can come home and then don't isn't it!. That said better to take your time, and not have the false start we had. Temperature spike when he got home on day one and straight back it!
So hope tomorrow is the day……take it easy and both enjoy 🙂
Good luck
Vicki and Colin x
Day Twenty Four (Day Twenty) Home
A very frustrating day but Phil is finally home. There was a mix up yesterday and the doctor crossed the anti sick meds off Phil's list of drugs instead of the pill he was taking for his neuropathy. When Phil asked for the anti sick meds he was told he couldn't have them and this took 24 hours to sort out. It may have been psychological but Phil started to feel sick without the pills. Phil also found out that he should have been given more platelets yesterday and these did not turn up until this afternoon by which time Phil had come out in a rash. Phil also asked daily for the last week if transport would be provided to get him home and the answer was always yes until the moment he was discharged when Phil was told he did not qualify as he was not neutropenic (under 0.5). The NHS is an amazing service but it can be very frustrating at times!!!!!!!
The good news is Phil is now sitting on the couch next to me at home and he has just had marmite on toast. 🙂
Phil and I would both like to thank all of you for your support during his stem cell transplant.
Megan
Gosh Megan and Phil, SUCH GREAT NEWS! Finally home. I haven't logged in for a few days and it's great to be reading about marmite and sofas rather than an IV drip and windowless hospital room. I bet it felt like it would never end… but it has. Similarly I know there will be ups and downs in the next phase, but they will pass too and become distant memories before you know it.
I'm mainly having a break from reading about myeloma online (allowing a bit more time for other things in my life!), but will think of you and wish you all the best for the next leg of the journey. And look forward to meeting up for that coffee one of these days 🙂 but obviously when things are easier – important not to rush!
Helen
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