This topic contains 105 replies, has 18 voices, and was last updated by 
meganjane 11 years, 1 month ago.
Hi Megan and Phil
Yes I remember that Baby Dalek arrive on a trolly, I was told that it is Bomb proof and no matter what happend to it they would send in a helicopter and have it picked up and brought to me (i felt like royalty lol)
I had a femoral line in for my 16 days so no need for more needles all put in and taken out from that.
Am sure you will love your Brand new Phil as much as the older one 😀
Love to you both (now get toilet roll in fridge Bless its on its way 😉 )
Tom "Onwards and Upwards" xxx
Hey Megan,
I remember that sweetcorn smell, and was always very polite to say to Colin I could hardly smell it (little White lie as it would waft in and out!), for a number of days I could smell it long before I even got to the door to his room!
Reading your posts certainly takes us both back to a very trying time. I can remember crying when Colin told me he'd got his cells back!. I never saw the machine but I know he had 16 bags!
It's a slow process, and a sometimes challenging one for you and Phil both…..immune system goes down and then the up and then Phil home. A great feeling:-). Colin is still marvelling at being home even though I nag him to slow up 🙂
Thinking of you both 🙂
Vicki and Colin x
[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
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 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
HiMegan and Phil
Well we are doing great (even the melt down is allowed) shame Phil can't get his own room, I was never actually sick I just felt sick.
Good job you have faith innPhil monitoring himself.
Stay well and fit and Phil will soon be home.
Love Tom "onwards and upwards" xxx
Hi Megan,
It sounds like Phil is doing very well, considering – it's a good sign he's well enough to feel bored!! But I'm so sorry you're having to deal with the anxiety of him being in a shared room. I'm not surprised you went into meltdown…. I honestly thought it was normal for people undergoing SCT to be in isolation, although others may know of different set-ups. It's a tough call to know what to do – I know you've been really happy with the care overall and I have too with mine, but I did find that just once in a while the communications etc between different teams and individuals can break down, meaning the wrong advice or slightly absurd/worrying situations like the nurse asking Phil if he's going home… (after a night in intensive care with pneumonia when they discharged me I had a physio turn up who was adamant I should get off the bed and walk out on a zimmer frame… at that point I hadn't yet had my leg op and had been told by all the doctors that I had paper-thin bone and was on no account to get off the bed – let alone the fact that I had very serious pneumonia. But she was very feisty and keen to do her job and it took ages to get her to see that I really couldn't)…. so you obviously really want to keep on top of it. I don't know if there's any sort of 'patient liaison' outfit at Bart's or complaints mechanism? Sometimes it's worth bringing in someone on your side or to 'escalate' it to more senior doctors. Hard at Xmas and weekends in particular I'm sure, but keep asking different people until someone gives the right answer!!
Take care of yourself too, and hang on in there. At least Phil clearly has an iron constitution! No vomiting during all the chemo and nearly 8 million stem cells sounds like he's a good case to be out in super-fast time.
Hx
PS |I found this link – just in case they're open on Monday morning! or you could try emailing…
http://www.bartsandthelondon.nhs.uk/for-patients-and-visitors/advice-and-support/patient-advice-and-liaison-service-pals/
[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
Hi Megan and Phil
Well done on your new pad, am sure you will love it,it's lonely but you can snore as much as you want.
Talking of that you must now be near the " I don't want visitors" so don't take it too hard Megan when Phil is asleep through your visits lol.
Stay well you two it's as you say a waiting game.
Love Tom " onwards and upwards" xxxx
Megan,
So pleased Phil got his own room, I was telling Colin about the shared situation this morning. I know I would've had meltdown as I'd have been convinced Colin would have caught something off someone else! You just want the best for Phil and I'm pretty sure I'd just be keeping a close eye on what's going on! (bet they were glad to see the back of me when Colin came home…..I was a mrs 1000 questions!. Who cares it's better than worrying!
We found that when colins immune system started to drop it was slow at first and then it went down in a heap!. Theres only one way then….up Colin slept loads when I was there, so the iPad came in handy to do Christmas shopping (weird that was as I didnt feel like it at all!
Look after yourself too Megan, it's really hard for us on the sidelines too, I found it mental torment at times.
Vicki and Colin….and best of luck xx
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
[u]Day Eight (Day Four)[/u] Isolation Begins
Phil is now not allowed to leave his room but luckily I was able to tell him the truth and say he was not missing anything outside, cold, raining, miserable and grey. I have to wear a plastic apron and gloves now when I go into the room which is a lovely fashion ensemble.
Phil is starting to feel the effects of the chemo but he remains in good spirits. Phil will have an IV bag of fluids tonight to make sure he does not become to dehydrated but he is still managing to eat a little bit at each meal and he had a protein shake and an ice cream this afternoon.
Megan
Hi Megan and Phil,
Just tuning in to see how things are going and wishing you both well. Don't underestimate how hard it is for you too Megan. I was and am exactly the same as you…..worrying whilst your there, and when you are away as you can't see what it going on, are they doing it right?, are they looking after him etc etc :-(, I feel like that now and Colin has been out of hospital a month! Colin was actually only sick a couple of times, which he hates at the best of times, but we were told they are very good these days at dealing with the side effects!
Very best wishes to you both. we hope 2013 will be a good one for all of us!
Vicki and Colin x
[u]Day Nine (Day Five)[/u] Christmas
A bit tough for both Phil and I today as there is no public transport on Christmas day so I was not able to visit. Note to myself, I must get over my fear of driving in this country!!!
Phil is doing okay but he has now developed a rash that they think might be a side effect of the other drugs he is on, they will give him another drug for this:-D
Phil is still not interested in food and has lost just over eight pounds so far so they are going to start monitoring what he is eating to ensure he is getting enough and then get the nutritionist involved. Phil and I both hope that once he gets over the dashing to the toilet stage his appetite will come back as he has not lost his sense of taste yet. So far the mouth washes (and maybe the ice chips during the chemo) have kept any ulcers and soreness at bay.
The saline drips continue to keep him hydrated and the current drip he is on also has potassium and something else in it to keep his bloods at the right levels.
Phil had quite a few calls and texts today (a lot of them from me!!) so he has not been too bored and he remains upbeat.
Megan
Hi Vicki,
It is quite funny, I was soooo desperate to get Phil into a single room and away from all the germs and now he is all by himself I worry because unless someone comes and opens the door nobody can see him!!! I keep saying to Phil when I leave to ring the bell if he needs anything. It is funny how I veer from one extreme to the other and all of the extremes are a bit unreasonable. The care has been excellent but I just don't seem to be able to settle down and trust that it is okay when I am not there. It is not like I can actually do anything medical but I suppose it is normal reaction to the situation. 🙂
Megan
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