This topic contains 105 replies, has 18 voices, and was last updated by 
meganjane 11 years, 8 months ago.
Hi Megan
Yes am sure Phil will be Jel when he knows about my white board with results posted every afternoon 😀
It looks like you might not have a Transplant Ward ? if Phil is kept in same place before he leaves you will have to have a walk to see if the ward exsists Ha ha.
But the haematology ward at our Local (Scunthorpe General) was and is great I spent a few week ends in that one over mu MM time.
Am pleased work went well Megan am sure it was good to be "Normal" 😀
Take care and now Go To Bed.
Ha ha
Love Tom "Onwards and Upwards" xxx
Hi Megan. I have not posted on this site for a while (which I feel bad about as it is so supportive). I have been reading your daily diary regarding Phil's SCT. I had mine in Barts in sept 2011. I was put in an isolation room after a few days, only because there were so many men that they could not have men and women together on the transplant ward (no different from where Phil is sorry????but yes the transplant ward does exist????)I was told when I reached zero "don't ask any more about levels coz we won't tell you" (I was also a number maniac) they said one day they will run in with the good news I could go home and guess what? They did. I had 1 bout of sickness due to 2 drugs reacting, no dioreah (didnt have it so can't spell it) and just some soreness in my mouth (they kept telling me i was boring, which i loved) After 12 days they ran in my room and said I could go home. I was so shocked I asked them to do another blood test and keep me one more day (they refused ha ha). I wish phil a speedy rise in neutrophils love kay x
Hi Megan and Phil,
Well that's double good news if you look at it like that – and poor Phil feeling rotten but it's very true that once you get to the bottom the only way is up! You might even be past the halfway point of this hospital stay now! And if you think of all the cycles of PADIMAC etc which have gone before, it's way past the halfway mark and onto the home straight.
Plus 2012 is nearly behind us 🙂
Helen x
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
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
[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
Hi Megan,
From what I understood the 'bottom' is when the white blood cell count is zero! You then know that the melphalan has done its worst and the only way is up.
I think it is also sensible to be prepared for set backs. When I came out of The Christie a few weeks back and feeling quite well I pushed the doctor's words about being prepared to the back of my mind thinking that I would be different. Nemesis set in and my wife ended up driving me back to hospital at 2.30 am on Christmas Day with a fever, nausea and diarrhoea. Fortunately they only kept me in for 12 hours and sent me home with two more antibiotics and Tamiflu. The haematologist said that it was highly likely that I would continue to get viral infections for the next few months, The Christie, being a specialist cancer hospital has a fantastic medical assessment unit where they assess their patients who experience problems and decide within 36 hours maximum whether to admit them or not.
What I am trying to say is be glad about all the positive news but don't get over anxious when there are setbacks – a lot of people have them apparently.
Good luck to Phil with the continuance of his journey,
Chris
Hi Megan and Phil
My you have done well Phil I never let my stand leave my room Lol, I was still on anti sick tabs (was for a couple of months when got home to be fair)
I was out on my 16th day and even threw up on that day (but dint tell the nurse ((Nawty Tom)) as she might have kept me in )
Keep it going and it will work dont forget No RUSH when you get home still need rest and sleep lots of it.
Love to you Both Tom "Onwards and Upwards" xxxx
Hi Megan and Phil. I was on Bodley Scott Ward but started on A4 absolutely no difference so Phil is not missing out on anything. Infact the ward in A4 is nicer as on BS ward you are lined up in cubicles but the isolation rooms are the same. So pleased he no longer has the IV once they put the stem cells back in me they came in 11 days later and said I could go home. I know everyone is different but In hindsight I'm glad they never gave me a daily number. I am too obsessive lol. I wish phil well kay x
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 probably right about the numbers, it is easy to become obsessed with them!
Megan
[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 temperature also started to rise. When Phil's temperature hit 38.5 they decided to switch him from the oral antibiotics he has been taking for the rash to a different type that is given through the PICC line. Phil also took some paracetamol which helped bring the temperature down. A blood sample has been taken from the PICC line and from a cannula to see if there is an infection either in the PICC line itself or in the blood.
Phil's platelet count was down to 5 today so he also had a transfusion of platelets. These were ordered at 10am and finally were given at 5pm, Phil did feel better after receiving the transfusion but whether it was the platelets that helped or the paracetamol or maybe both I don't know.
Due to the platelet transfusion and the fluid needed due to the high temperature the IV stand has returned.
Phil is still feeling unwell now but hopefully the new antibiotics will kick in over night and tomorrow will be a better day.
To top the day off Phil's hair has started to fall out, we were waiting for this but it could have picked a slightly different day to start!
Megan
Hi Megan and Phil,
I have just caught up with your thread here, I had my SCT at Kings in March this year and your daily update is bringing it all back to me.
As previously said all hospitals seems to do it a little differently, I had not found this site when I had mine but now I am on here I find it very helpful,I am finding how you and Phil are coping with the journey a reminder of my own.
I did not suffer sickness and took my anti sickness pills religiously but my diarheoa was horrible,(the nurses were extreemly helpful though.)How I wish I had known of taking ice when having the methalan as I had terrible mouth and throat but the nurses gave me orimorph before each meal which was how I managed to eat.
Agree with Phil and Tom the IV stand never seemed to leave my side and hated having to drag it every where,no-where had I read how difficult it is to sleep with one either!!!perhaps only me !!it will leave soon though as the end of the SCT journey comes.
The thing I had problems with was one tablet given to me 3 times a day used to very difficult to swallow so I hated having to take it and used to save it to the end, on being sent home at the end of my SCT journey I read on the box that these pills were to be dissolved in water then taken!!!! Explaining why they had been so difficult to swallow !:-)
I seem to remember that the first 14 days were said to be the worst,so Phil is nearly there.
My husband gave up work to care for me so cannot imagine how you must be coping on returning to work, I have read many comments from carers on here and it is possibly more difficult for you all than us patients!Take care and rest all you can.
The hair loss is hard to deal with,I thought I was ok with it but lost it at some point but again the staff were very good and sat with me while I cried over my loss !! (Think it is cabin fever too as the isolation does get to you, I was by the end of my time in Kings on very good speaking terms with the cleaners, food attendants and even the bin collectors!!!) LOL
Babs. xx
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 people's logs of the SCT helped us prepare and deal with Phil's so hopefully my ramblings will help some one else in the future. We were thankful for the ice chip tip as so far Phil's mouth has been fine, I guess there is no way to know if the ice made a difference but it has worked for Phil.:-)
I am very lucky as I only work part time (two weeks a month)and since Phil was diagnosed I have only had to take two days off work, Phil very obligingly has needed my help only at the weekends and during my time off each month. Luckily (?) Phil volunteered for redundancy in January so he finished work a couple of weeks before he was diagnosed so he does not have to worry about returning to work. We had sold the house and were moving to Devon but maybe staying in London isn't so bad after all considering most of Devon is now under water!
We have heard from the doctors that the first 14 days after the transplant are the worst so we are hoping Phil is coming to the end of the nasty bit and then he will just need to concentrate on sleeping a lot for the next few months to regain his strength.
Megan
[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 the lowered immunity combined with the upset stomach has resulted in it finally rearing its ugly head. The antibiotics they put Phil on yesterday will treat it so there is no need for any further new drugs at the moment. As Phil's temperature has come down he does not currently need anymore bags of fluid so the IV stand has been pushed into a corner (but not quite out of the room yet).:-)
Phil is no longer in isolation but he still has his single room for the time being. It turns out that the apron and gloves routine was more to protect us from Phil than to protect Phil from us. The fact that his neutrophils are still zero does not matter, it was the stomach upset that got him the single room and the isolation protocol. As Phil's stomach has been fine for two days now we are expecting a return to a shared room at any moment. On the plus side all the shared rooms have windows so Phil will see daylight again if a move does happen.
The hair continues to fall everywhere, we shall see if it all goes but Phil has his flat cap ready in preparation to keep his head warm if it does.:-D
Megan
Five minutes after I posted today's update Phil sent a text to say the IV stand is back in use, he has just received some more platelets.
Megan was really glad to read of Phil's progress and then sorry to read the Iv is up again. I really hope that 2013 (3 1/2 hours to go) shows a marked improvement in Phil and that you take care of yourself
Love and hugs Jean xx
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