[meganjaneParticipant]

[u]Day One[/u] (or is day one when you get your cells back?): We arrived at the hospital at 2:15pm for blood tests, to get Phil's line put in, a MRI and to be seen by a doctor before being admitted. That at least was the plan.

2:45 blood was taken but Phil was told he would not get his line today as they were too busy.

4:45 more blood was taken as one of the original samples was not large enough for the lab to test – did the lab maybe drop the vial?

5:30 the Doctor ran through an admitting form asking various questions and listened to Phil's lungs and heart.

6:00 MRI – a terrible experience according to Phil as you can not move and you are completely enclosed, Phil is not normally claustrophobic but he said with the noise and the closeness of the tunnel to your face it is an off putting situation. He managed to get through the 50 minutes without pressing the panic button and hopefully he will not have to have another one for awhile!

7:45 I left the hospital after being assured by the staff that although Phil did not have a bed yet he would get one eventually.

8:15 Phil gets a bed at last! Even better it is a private room.

So that is Day one (or Day Minus 4 depending on how I should be counting) complete.

Megan

[HelenRParticipant]

Hi Megan,

Thinking of you and Phil! So glad he did get a bed – it would have been very frustrating to be all set up and then to go home again. And yes, he needs a private room, one of the 'perks' of isolation…. Do you have to put on a lovely pink plastic apron to go and see him? My nieces were quite keen on those when they came to visit me 🙂

I know what he means about the MRI… all those really loud noises in your ears and somehow because you're trying to stay still it can be hard to get enough breath in. But the pics do look amazing which come out so it's definitely worth it – I said to you I was having one on my shoulder recently and I saw the images yesterday – I can never see what they mean on the x-ray but on that it's like a moving picture from all angles so you can really tell what's going on.

No idea about which is day 1, but I hope it's as few as possible! Sorry you'll be dealing with all this through Xmas but I hope the nurses have some festive cheer and tinsel and before too long you'll both be back home celebrating the start of 2013 and having belated feasts I'm sure. Roll on the spring, I say…

Helen x

[FOXLEYParticipant]

I would recommend using the hospital's counting system. In my experience everything happened like clockwork on the appointed day. In The Christie I was handed an A4 sheet outlying the protocol for the whole affair that gave me a good idea when to expect all the different treatments.
Good luck,
Chris

[PerkymiteParticipant]

Just hang on in there Phil. I wish you all the best of luck. Keep posting.

Kindest regards – vasbyte

David

[jmsmythParticipant]

Megan good luck to Phil. Hope all goes great! 🙂
Love Jean x

[meganjaneParticipant]

[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

[meganjaneParticipant]

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

[VickiParticipant]

Hi Megan

Hope Phil is still feeling ok. With regard to the counting we were told that when the high does therapy was given that was day minus 2, then a rest day and then the cells return on the first day I think was day zero then plus one and so on. To be honest we lost track of what day it was and were just gritting our teeth to get through it. We did feel a bit freaked out when they told us that his immune system was getting closer to zero because that's when we started to really worry about infection. I'm not sure if I expected some sort of siren to go off when it got to zero but actually it was quote uneventful! In some repsects.

Ref the room he is bound to go into a separate room when his immune systems go down.

Best of luck and keep your chin up

Vicki and Colin x

[HelenRParticipant]

Well done Phil and his veins! I hope the side effects are all in check after the Melphalan. What a shame about the room… hopefully his room-mates are good company and not snorers!! It's funny how each hospital system is different like you say, but do feel entitled to make sure he'll be shuffled back into a private room when his immune system is low.
Another day down, hang on in there xx

[tomParticipant]

Well done Phil getting all that done and the computor is down?? Dont know how they did it :-/ am sure the bits of paper we used to carry about when we went to A/E is much better than the computor thingie 😛

Keep well Phil and eat as much as you can before you dont want to :-0

Tom "Onwards and Upwards" x

[meganjaneParticipant]

[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

[jmsmythParticipant]

Hi Megan

Glad to hear that Phil is up to speed. I hope everything goes to plan and Phil gets home quickly
Best wishes to you both
Love Jean x

[AliParticipant]

Hi Megan

Crikey, just a few minor hiccups! Lets hope the rest of Phils stay goes according to plan and he has an uneventful stay:-)

Remember to look after yourself too

Love Ali x

[bikerchrisParticipant]

HI Megan,
Glad to hear that Phils SCT is going well so far – the various drips seem endless, and sometimes I forgot whether I was attached or not!
Good luck with the next few days, I was very pleased when I was moved to a single room once the old blood counts dropped, you don't really want to chat when you are feeling grotty, and the loo is much more local!
Keep it up,
Chris

[meganjaneParticipant]

[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

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