[HelenRParticipant]

Happy Xmas Megan and Phil!
Another day down, so another day closer to being home again!
Hmm, maybe it's unfair to tell you this in the circumstances but my only problem right now is having eaten so much turkey and all the rest that I feel like I'm about to burst! But yes, I remember those protein drinks and they're very handy. Before you know it, the weight will all pile back on and then you wonder how on earth to get it off again!
Hx

[ozzyParticipant]

Hi Megan
Just reading your threads brings the whole experience back and its strange how things are done differently over the country. When I had my sct in Jan 2011 at Univ Hospital Cardiff there is a transplant unit with 6 rooms and you spend the 3 weeks in isolation from the start. I found it lonely but realise you must have protection from others. The worst in now over for phil and things do get better. All the best to you both and I would like to wish everybody a healthy and happy new year.
Regards Ozzy xxxxx

[ozzyParticipant]

Hi Megan
Just reading your threads brings the whole experience back and its strange how things are done differently over the country. When I had my sct in Jan 2011 at Univ Hospital Cardiff there is a transplant unit with 6 rooms and you spend the 3 weeks in isolation from the start. I found it lonely but realise you must have protection from others. The worst in now over for phil and things do get better. All the best to you both and I would like to wish everybody a healthy and happy new year.
Regards Ozzy xxxxx

[meganjaneParticipant]

Hi Helen,

Glad to hear you had a proper Christmas, Phil is losing the weight but I seem to be piling it on. The last time he was in hospital for the leg operations I was such a nervous wreck I didn't eat anything but this time we knew it was coming and knew what to expect and I find when I get home I can't be bothered to cook a proper meal for one so instead I just snack!! When Phil gets home I will need to feed him up and curtail my own calorie intake 🙂

Megan

[meganjaneParticipant]

Hi Ozzy,

Phil and I have discovered throughout his first line treatment, stem cell harvest and now the transplant that things are very different depending on the hospital. Phil's first line treatment was on the PADIMAC trial and even this seems to be different depending on which participating hospital you are treated at. The general idea is always the same but the details do differ quite a bit! Phil is hoping he will get to the "things getting better part" soon. It hasn't been as bad as we expected but it hasn't been pleasant for Phil either. Fingers crossed Phil will soon be on the mend but we know it takes time.

Megan

[meganjaneParticipant]

[u]Day Ten (Day Six)[/u] More of the same

We knew Phil would be in hospital for 3 to 4 weeks but when you are living your normal life a month can pass in the blink of an eye but when your life becomes reduced to a single hospital room (with no windows!!) the time can drag a bit. Day ten is very similar to days eight and nine but I had to look back at this thread today to work out when Phil went on his saline drip because for Phil it feels like he has now been on it forever….. Each day that passes though is a day closer to Phil coming home so we look forward to the day I can enter the room without gloves and apron and Phil is allowed out to see the sunshine (rain) again. At least Phil is not missing a glorious spell of weather and the ceiling in his room is not leaking yet 🙂

Megan

[meganjaneParticipant]

[u]Day Eleven (Day Seven)[/u] Starting to Improve

Phil's upset stomach that appeared on day eight is still with him but is getting better so hopefully the corner has been turned. Phil's neutrophils are still dropping, today's reading was 1.3. There was a brief improvement in the neutrophil levels on day nine but the doctors said this was due to the GCSF injections that were started on day eight, a false dawn of sorts. The injections are due to continue until day fourteen so hopefully by then the neutophils will start rising?

Megan

[jmsmythParticipant]

Hi Megan
Hope you are bearing up. 🙂 glad that Phil's tummy is getting better. Hope all goes to plan. We were at consultant today and are just waiting for the phone call. Dr told us that the first 14 days of transplant were the worse. So Phil has reached that hurdle so hope he is turning the corner and that he can see the light at the end of the tunnel! 😉
Love Jean x

[tomParticipant]

Hi Megan
Phils doing great it sounds better than mine 😀
Keep up the good work and Megan dont forget yourself I hope you are getting plenty of rest and sleep.

love Tom "Onwards and Upwards" xxx

[meganjaneParticipant]

Hi Tom and Jean,

It appears I jinxed Phil by writing a 'starting to improve' post as two hours later he threw up for the first time, hopefully it will be a one off!!

I am trying to make sure I get enough sleep but I am a bit like a naughty child, there is no one here to tell me to go to bed so I don't 🙂 I am back at work tomorrow for the first time since Phil went into hospital so I think I will be in bed early tomorrow night, I just hope I stay awake at my desk!!

Megan

[VickiParticipant]

Hi Megan Jane

We did think about you over Christmas. It must be so hard dealing with it at a festive time when others are jollying it up! Still as others have said, the more days that go by, the closer it is to getting Phil home. It really is such and individual journey. Colin did not have much sickness but he had the tummy upset. His was more to do with terrific pain in his arms, which apparently is settling. You must look after yourself too Megan. I am reaping the benefit now having been absolutely shattered, ending up with a stinking cold and cough (not as long as Helens cough I hope). I was due this due to exhaustion and worry.

I know what you mean about worrying about the medics, but it's hard when your loved one is Ill and you want them better. It really is a roller coaster…..Colin ended up at hospital on Christmas eve with a cough and cold,. We wer there for 6 hours! Now he is on tamiflu and antibiotics! just when we thought the story was concluding, and his bloods have gone right down due to fighting this latest bout!.

Phil is in safe hands Megan and like others have said, he needs you to keep well so that he doesn't have to worry about you, and that you have bags of energy to look after him when he comes home 🙂

Vicki and Colin x

[meganjaneParticipant]

Hi Vicki,

So sorry Colin had to visit the hospital yet again, it just doesn't seem fair, you finally get him home and then he gets sick and at Christmas! Hopefully his bloods pick up quickly now he is on the tamiflu and antibiotics. I also hope you recover quickly, there are so many germs going around at the moment, I feel like I should wear a mask on the tube and most of my team were coughing and spluttering in the office today, it makes it a pleasure to go into Phil's isolation room – the one place in my day that is (hopefully!!) germ free. 🙂

Megan

[meganjaneParticipant]

Day Twelve (Day Eight) – Good news and bad news that is actually good news

After asking every day since he was admitted Phil finally got to see his blood results today (the computer seems to be down a lot!). This is the good news as Phil likes to know exactly what is going on and he has found it hard not knowing what his blood has been doing.

The bad news is that Phil has been neutropenic since at least Boxing Day (this does beg the question where the doctor got the reading of 1.3 for neutrophils that we were given yesterday?) but this is actually good news as the only way now is onwards and upwards. When Phil was told yesterday that the neutrophils were dropping but still at 1.3 it was a bit depressing as he has felt so rotten since Monday he thought that maybe it would get worse as his counts had not dropped all the way. It may be psychological but now that Phil knows his counts can't go any lower he is feeling quite positive.

The saline and potassium drips continue and the only other development is that Phil was put on antibiotics yesterday as he has developed a rash. Luckily the rash is not too itchy so hopefully the antibiotics will clear it up quickly.

Megan

[tomParticipant]

Hi Megan
I hope your first day back at work went well? and they let you get a few bo bo's sneaked in during your shift ha ha.
As for the blood results at Castle hill where I had mine done blood results were writen on a board in my room every day and the nusre talked me through them and that was great 😀 I was told everything all the way through.

Am pleased you said it the only way is Onwards and Upwards, long haul but it has to be done one day at a time 🙂

Love and Hugs
Tom "Onwards and Upwards" xxx

[meganjaneParticipant]

Hi Tom,

Phil will be jealous – a board in your room with your results written up daily? At this stage Phil would just be happy with a piece of paper slipped under the door!! I think the biggest problem is that Phil has still not made it to the actual Transplant Ward, there is such a bed shortage that Phil is still on the general haematology ward. As he is now in isolation I assume he will not be moved so we may never actually get to see the mythical transplant ward, we have built it up in our imaginations so much now that anything less than paradise will be a disappointment if we ever do set foot in it! 😀

Work went surprisingly well as everyone was still in Christmas holiday mode, a nice easy day to ease back into some normality.

Megan

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