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
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
[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
[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
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 0 part seems to be over and the IV stand is still firmly in the corner which is good news.:-D
We aren't getting our hopes up too much yet about a day for home as we know things can change but next week sometime would be nice. I do have to get cleaning soon though as I am afraid I have only done basic chores since Phil went in, I have taken the advice from everyone to look after myself and used it as an excuse to avoid chores when I get home each night.:-) I even asked the doctor how much notice we might get that Phil can come home because I needed to clean the house first!!
Megan
[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 during his initial chemo but never enough to leave patches or bald spots so maybe he would be lucky. With this in mind Phil had his hair cut before going into hospital but not too short. I know it is more difficult for ladies but any guys reading this post, shave your hair off before you go in. Phil's bed is covered in hair, all his clothes are covered in hair, every time he takes his hat off more hair falls out and he is getting very annoyed by all the hair!!!!
There was really no other change today, Phil still feels queasy and is getting more tired so napping more (or trying to, I seem to call him every time he has just drifted off – oops!).
Phil had quite a bit of lower back, shoulder and rib pain before he went in due to the bone damage. This seems to have mostly gone away. We do not know if this is from the treatment or if it is because he has been doing less, not climbing stairs and generally staying in bed a lot.:-) We had read Peter's post where he mentioned that his Orthopaedic specialist said that the SCT itself can reduce spinal bone pain so we are hoping this is what has made the vertebrae pain for Phil go away. Only time (and going up and down the stairs at home a few times) will tell.
Megan
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
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
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 nice to have that to look forward to and it helps to know the SCT has helped others.
I follow you (and Tom!)on twitter and through your re-tweets I have found other sources of Myeloma info which has been very useful. I also, through Tom's re-tweets am now following Prince Charles which gives me a daily laugh!
Megan
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 David's 'Musings From Ward 9', Vicki's 'Colin SCT Starting, here goes' and Chris' 'Revving Up For SCT' posts.
Megan
[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 risen from 0 to 0.1 so Phil's system has started to re-generate. All the talking Phil has done to his stem cells encouraging them to engraft has worked!:-D The other blood counts have risen as well with the haemoglobin up to 10.9 and the platelets up from the low of 4 to 27.
Phil is still feeling queasy and has grown bored of the hospital food, he is eating the desserts but often the hot food does not appeal. Today for lunch I got him a bacon buttie from the hospital canteen and he managed to eat that so hopefully when he gets home we will be able to find something to tempt his taste buds. Until then the hospital food topped up with stuff I bring in will have to do. The thing Phil is most craving is marmite on toast but he doesn't want me to bring it in as the toast would be soggy by the time it got to his room so that may be the first treat when he gets home. 🙂
Phil is also feeling more tired tonight but I think that may be because he had more energy today so did not nap at all while I was there.
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.
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 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 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
