That is brilliant David! 😀
Megan
Thanks Tom, Vicki and Colin,
It is amazing how stressful it all is considering everything is going fine. I think things get blown out of proportion in my mind as I sit at the hospital and worry and then I come home and worry even more as I am not there to keep an eye on things!
Thank you for your support, hopefully Phil start to sleep more so he can forget for a while how sick he feels. The anti sickness meds seem to be stopping Phil from actually being sick but I finds feeling queasy all the time very annoying. I wish I could somehow fast forward through this bit for him but we will get there soon enough!!
Megan
Hi Andy,
That is great, well done to you, your family and your friends!
I especially like the 30p – every bit helps 😀
Megan
[u]Day Seven (Day Three)[/u] The day Phil gets a single room:-) 🙂 🙂
There was not much change today, Phil is still feeling queasy but he managed to eat breakfast and some lunch. Mid morning he was moved to a room on his own, hurrah!!! It has no windows but it also has no other people so we are both happy. It is also on the quieter side of the ward so Phil can sleep more soundly. Phil's neutrophil levels are starting to drop but they are still over 2 at the moment. It is just a waiting game now.
Megan
[u]Day Six (Day Two)[/u] The Day Phil got Bored and Megan had a Meltdown
Phil is doing well, he still feels queasy and has gone off his food but no sickness yet. When I left this afternoon he was full of energy due to eating three jelly babies, the sugar went straight to his head!:-D He also announced that he was now bored, I will need to be more entertaining tomorrow!
My meltdown happened mid afternoon when I realised Phil will probably never get the single room and isolation I thought was needed. The Doctor said there was no need for isolation. Yet another nurse then asked Phil if he was going home today. It worries me, I wonder if anyone actually knows why he is there??? I had a few tears but I feel better now. I just have to assume that someone knows what is going on and is monitoring Phil properly. Luckily Phil is able to monitor himself at the moment so hopefully it will all be okay.
Megan
Hi Tom – I am pretty pleased with my brand new Phil, very similar to the old one which is just the way I like it!
Hi Vicki and Colin – 16 bags!!!! Wow, Phil struggled a bit with just two. It was a bit freaky the way the side effects appeared so suddenly, having to do that 16 times would have stretched Phil's patience and my nerves! Phil did say today that it felt very strange waiting to get sick although we are hoping that his lack of sickness side effects so far throughout his treatment may mean he doesn't suffer too much, we will find out soon enough.:-/ Glad to hear Colin is continuing to improve.
Megan
[u]Day Five (Day One)[/u] The Day the Sleeping Begins
There is not a lot to report today. Phil slept much better last night and for quite a while this afternoon. Phil is still eating but not enjoying it as much, he still feels a bit queasy but no signs of any sickness and no dashes to the loo (yet).:-D
The noisy roommate was discharged this afternoon so hopefully an uninterrupted sleep tonight – except for the obs and meds throughout the night of course!
Megan
Hello Tina,
I am so glad to hear you are feeling better, best wishes for a great Christmas.
Megan
[u]Day Four (Day Zero)[/u] The day Phil's stem cells were returned.
Phil is still feeling fine but a little bit queasy and quite tired. The tiredness is probably a side effect from all the drugs but it is not helped by the man in the corner of his room who talks loudly to himself day and night!
3:45pm Pre meds were given to Phil through his through PICC line
4:00pm What looked like a baby Dalek arrived by the bed. This was the storage container that holds the stem cells, the temperature inside the chamber is -160C, special gloves are used by the nurse when getting the cells out of the container!
Phil had a cannula inserted in his arm as the PICC line is too small to be used for the stem cells. A small bag of Saline is given through the cannula while the stem cells warm up in a water bath heated to 37C.
There are two bags of cells that combined hold 3.88 million stem cells.
4:23pm The first lot of stem cells are started on the drip and the nurse uses a large syringe to control the flow of the stem cells into the cannula. Each bag of stem cells needs to be given within 15 minutes of starting so the cells do not deteriorate. Within 1 second Phil can taste sweetcorn (a common side effect due to the preservative used to store the cells). Phil also experiences the side effects of wheeziness and a flushed face. These side effects come on very quickly but also disappear quickly when the nurse slows the rate the stem cells are entering the cannula. When the first bag is done Phil has a low blood pressure of 108/71 but this is another common side effect.
Another two bags of saline are given to allow the side effects to completely disappear before the second bag is started.
4:56pm The second bag starts, Phil again experiences wheeziness, flushed face and some chest pains this time. The rate of flow is slowed to help with this. At the end of the second bag his blood pressure is better but still low at 115/81
5:15pm A brand new Phil is born!
Overall Phil did not find the experience too bad. We had two watchers in addition to the nurse doing the procedure as normally stem cell transplants take place on a different ward but due to the bed shortages we have not made it there quite yet! One nurse was being trained in how to do it and another nurse had never seen it done before so popped into the room for the first bag to experience it.
Phil could taste sweetcorn and I could smell garlic so between the two of us we had both of those side effects 🙂
Phil only had a yogurt for dinner but we put the sandwich he ordered in the fridge by the bed so if he does feel hungry later he can have that – or treat himself to some of the chocolate or crisps he has on hand!
So day Zero has now been completed and we are on the road to Phil coming home.
Megan
[u]Day Three[/u] The Day Of Rest
We had the counting system explained to us today so we are now up to speed!! Tomorrow will be day Zero when Phil gets his cells back. Today is called the day of rest as it is the time to recover from the Melphalan. The 22 hour flush has turned into a 26 hour flush due to the delays in changing the bags but Phil should be unhooked from the last bag around 7:30 tonight so he will no longer need to drag his IV stand with him everywhere:-)
So far there is no sign of sickness, just a bit of acid reflux. Phil has been put back on Lansoprazole so this should help.
The only other development today was a low level of calcium in his blood. This could either be caused by all the fluids he has had or by having his last Zometa five days ago. We were told yesterday that they normally stop the Zometa 14 days before transplant (if this is what they normally do why did they not do this for Phil?). It is nothing serious but they will give him some medication to bump the levels up before the transplant tomorrow. We have learnt that muscle twitches are a sign of low calcium and Phil had twitches last night so in future we will now know what this might mean.
Phil's appetite is still fine so he is continuing to eat well.
Megan
Hooray!!! Well done Frank:-D
You can now both enjoy a lovely Christmas.
Megan
That is great news Helen 🙂 Thank you for sharing, I love hearing the good news, it give me hope for a healthy 2013 for my husband Phil.
Fingers crossed the cough goes away soon!
Megan
Hi Ann and Pete,
I think different hospitals do have different protocols, at Bart's in London they like to have 4 million for a transplant but I think it also depends on your size/weight. I am afraid I may have posted about Phil's number, he got 7.75 million, I was worried as it was not 8 million but reading about other people's experience I realise how lucky Phil is!!
I hope the 1.6 million is enough.
Take care,
Megan
Hi Helen – Sadly as you can see from my Day Two post the private room did not last. You only get that if you are sick and need to be kept away from other patients!!
Hello Chris – I don't think Bart's has a counting system, if they do I have never heard about it. We were asked twice by nurses today what treatment we were expecting!! I am sure someone knows what is going on but it often does not filter down the ranks. The care is excellent but you often end up waiting hours for things to happen. I assume now Phil has had the Melphalan he will get his cells back on Thursday but who knows what time 😀
David and Jean – thank you both for your posts. Phil does read everything on the forum but he has left the posting up to me until he is feeling more like his old self, he will pop up on here next year I am sure.
Megan
[u]Day Two[/u]
Midnight Phil is given his 9pm meds
8:15am Phil is asked to fill in an Admittance form that should be filled in within one hour of admittance 🙂
11am Phil is moved from his private room (we knew it was too good to be true!!) to a room with three other men
11:30am More blood is taken for tests
1:15pm We are sent three floors up to have Phil's PICC line put in. When we arrive they have never heard of Phil so there is a delay while a room is prepared and some one is found to do the procedure
2:00pm The PICC line is inserted, luckily Phil's veins are still quite good so the procedure only takes about 25 minutes. It is amazing to watch, very well thought out and completely painless for Phil.
2:30pm Phil goes to have a X-Ray to ensure the PICC line is in position. When we arrive back at the ward the nurse says she has just called a porter to collect Phil to take him to x-ray, we explain he has already been!
3:15pm We are told the computer system across the whole Trust (Bart's, Royal London, Whipp's, etc) has crashed and until it is re-booted Pharmacy can not fill any prescriptions. We think the system may have crashed earlier in the day which would explain why they were not expecting Phil for his PICC line – too much reliance on computers 🙂
4:00pm Computer system is back up and running
5:00pm Started fluids and then received the Melphalan. As per the advice on the forum Phil chewed ice chips before, during and after.
6:30pm Phil is put on a flush that will continue for 22 hours to protect the kidneys.
And that is the end of day two. So far so good, a bit annoying about the room move but we expected it. It is also unlikely to be the last room move as beds are constantly being juggled at Bart's, there may even be a move to another ward but we will wait and see.
Megan
