Archive for category Recovery
It’s been a really long time since I last updated this blog. It was in February. I’ve even had to check my blog for that! Lots and lots have been happening since February. Some good and some bad.
This is a bit of a hit and miss. I’ve been fighting a persistent cold (Rhino virus) since December 2011. And it’s just going away. Also, since the CMV virus has reactivated in my body, I’ve been on Valganciclovir and it’s proving to be murder on my blood count. I’ve found myself neutropenic many many times, and needing GCSF jabs almost daily to keep my blood counts up.
I’ve also been warded 2 times in the last 4 weeks for infection, the last one a chest infection that took over nearly 1/2 of my left lung!! Not very nice. Thankfully it’s all clear now and even the cold seems to be retreating a little.
Sophie’s just turned 9 months old. She’s crawling and learning to walk (every parent’s nightmare). She’s also really curious and very very observant. We’re taking a long deserved holiday back to Asia to see the rest of the family in a few days and everyone’s really looking forward to meeting her.
The wife’s hanging in there, pushing herself to the limits everyday to make sure that Sophie gets the best that she can get. So a typical day in the life of the wife is:
07:00 – Wake up and breast feed Sophie
09:00 – Wake up and take over breakfast feeding duties from me
10:00 – Dress Sophie and take her to playgroup
11:30 – Lunchtime (Sophie’s)
12:30 – The wife inhales her lunch if she’s lucky.
14:30 – Monkey Music or a walk in the park, if the weather is good.
15:00 – Breastfeed Sophie
16:00 – Back home and Mummy play time with Sophie
17:30 – Dinner time (Sophie’s)
18:15 – Sophie’s bath time
20:00 – Dinner (ours)
23:00 – Bed time
A pretty packed day with plenty of stimulation and activities for the little one, which I’m sure is one of the reasons why she’s so observant and curious. But then the wife is exhausted by the end of the day.
Work’s been a bit of a disaster to be honest. While they’ve been very good to me while I was undergoing treatment, now that I am back full time (albeit 3 days in the office and 2 days from home), I still can’t commit the time and energy that I want to due to the fact that I can only travel off peak and need to take time off for clinic visits.
So they can’t assign big, juicy projects to me; the very thing I was hired to do. It’s immensely frustrating to see projects like these assigned to someone else.
It’s also been a long hard slog since I’ve been diagnosed (in more ways than one), and the wife and I have been really looking forward to this break for a very very very long time. So while everyone fawns over the little one, we’re going to have a good, nice, long break. 🙂
And counting! 22 more days to day +200! Another major milestone. Well, it’s not all be smooth sailing over the last few weeks. I had to go into the hospital 3 times in the last week. First on Monday for my regular clinic sessions, then again on Thursday (more about that later) and then again on Friday (ditto)!
When I went in for my regular clinic last Monday, my blood counts were very low. My neutrophils were at 0.1, which was alarmingly low. Knowing that it wouldn’t have fallen to that level overnight, and knowing the stuff that I was up to prior to the clinic, it’s probably a wonder I hadn’t gotten an infection! So the doctors were obviously concerned, and asked me to come back again on Thursday for another test. Plus they gave me a couple of GCSF jabs to help boost my blood counts.
What scared me most was that one of the doctors actually told me that they’re worried about a relapse and have booked a bone marrow biopsy for Thursday. But he also said that it was very unlikely that it was a relapse, as my other blood results have been very positive. It was simply a precaution.
So on Thursday I dutifully reported into the outpatients department again, got stabbed yet again, but my blood counts were still low. There was some good news though, the CMV levels in my blood were negative and I could stop taking the valganciclovir and the septrin, both of which could cause my blood counts to drop. They also reduced my ciclosporin dose, which would help my immune system fight off this darn cold I’ve had for the last 7 or so weeks.
The downside to all the reduction in antivirals is that I need to take an infusion of Pentamidine every month. The good news it that it’s done on the same day as the clinic, so I only have to come in once a week but I’d have to stay longer.
The biggest bummer is that I still have to come into clinic once a week. I was hoping that I would be seen less often at this stage, but as they’ve just removed my anti-virals completely, it would be ‘wrong not to monitor’ me, according to the consultant. It’s a drag coming to clinic once a week, and it just takes up so much time. Hopefully I can move on to less frequent visits soon.
But for now, looking forward to day +200.
It’s 5 months now since my transplant. I know that cos Sophie’s 6 months old and my immune system is 1 month younger than her. It seems like an eternity to be honest and I can’t wait for the all clear from the doctors. The bad news is that I may have a chronic version of GvHD. I’m starting to get small, brown lumps all over my body.
The consultant reckons that it MIGHT be GvHD, or it could be an effect of the medication and/or radiation on my skin. If it is GvHD, there’s no effective treatment for it. It’s also very itchy, but that’s because it causes the skin to be very very dry, made worse by the very cold weather that we’re currently having in Europe.
His remedy? Moisturise and moisturise very very often. Apply the steroids to the hands and feet, and call them if it gets worse. He did say that he couldn’t tell that my skin had the little lumps. It was only something myself or the wife would know since we’re more familiar with my skin. So as far as he’s concerned, it’s a small problem. He also did mention that the Leukemia almost never comes back when patients have GvHD 100 days after transplant.
I take it as a good sign, but I don’t really want dry flaky skin all my life. But considering the alternative, it’s probably a very good deal.
On a separate note, I’ve added a twitter feed into the blog. I’ve not had much time to update the blog with the baby and work and stuff, so twitter seems like a good way to keep updated on things, albeit in a much briefer way. If you’re on Twitter, you can follow me @funhousediary. 🙂
It’s just over 4 months since I was discharged from the hospital following the Stem Cell Transplant (SCT). And to be honest, it’s been pretty good so far. I’ve been feeling much better and stronger since then, and I have more energy and can do more things without feeling as tired as quickly. Which also got me thinking about things have progressed since I was discharged.
Then, on 29th Sept 2011 and now, on 31 Jan 2012.
|Energy levels||Quarter tank. Sometimes less. I nap frequently.||Nearly a full tank. I don’t nap during the day.|
|Appetite||So so||Like a horse.|
|Walking||Not good. Legs ache after 10 minutes.||Much better. I can walk for 30 – 45 minutes.|
|Running||Er.. me? Run?||I do run. Across the road, to catch a bus or for the tube.|
|General alertness||Randomly staring into nothingness.||Less random staring in nothingness.|
|Working||Nope.||5 days a week now.|
|Stairs||3 maybe 4 are OK.||Queensway tube. 123 steps straight up. I did that. Office lift broken. Walked up to the 7th floor. Twice!|
|Crowded places||Er.. not keen.||Took the tube, queued for a table for yum char. Not too bad but always wary of sick people.|
|Diet restrictions||Lots and lots.||Much less. Only raw meats and fish apparently.|
Things have improved. And although I was sidelined with the CMV infection and now am STILL fighting (but slowly getting better) the Rhinovirus, it’s been a positive 4 months. The annoyance is that I need to report to the clinic once a week cos of my viral infections and that my Haemoglobins are low. Apparently the valganciclovir (for the CMV virus) messes up the bone marrow, hence the subsequent fall in Neutrophils, Platelets and now Haemoglobins. They are the last to fall and will take the longest to recover. I hope I don’t need a transfusion. That 2 hours for 1 unit and I will usually need 2 units.
But I can’t complain. There’ve been some bumps, but overall a good 4 months. 🙂
Day +134 has come and gone. Nothing much to report (thankfully) except that I still attend my clinics weekly (annoyingly)as the consultant is still worried about the ‘minute levels of the CMV virus’ in my blood. That and the fact that the Valganciclovir that I am taking for the CMV infection has decreased my Neutrophils, Platelet and Haemoglobin levels.
So far, it’s been good. I’ve caught a bug though (Rhinovirus) and it’s giving me a cough, sore throat and a runny nose. It’s one of a possible 103 variants of the Rhinovirus, and there’s no effective treatment for it. It’s otherwise known as the common cold. I’d rather catch the common cold than one of the 7 nasty viruses that they don’t have a treatment for and is dangerous and that I would have to be hospitalised! That would be tragic.
My meds have also been reduced. I’m taking the Valganciclovir once a day now (not twice), they’ve removed the Lamivudine (for Hepatitis) and they’ve reduced my Cyclosporin dose to 75mg twice a day (from 100mg). Now the thing to look out for would be the return of GvHD, which sometimes follow on from a reduction of the immunosuppressants. But I still apply my steroid cream once a day on my hands and feet, so hopefully I will be able to nip it in the bud this time.
It’s been a very busy week at work and at home. I’ve just delivered my first project in nearly a year. It’s a small, simple one, but it was good to do it. At least the brain cells are still functioning. It’s also the week Sophie’s getting baptised. So we’ve invited some friends over to the church for the ceremony and to the pub for a few drinks and some cake (a proper one this time). And to top it all off, it’s Chinese New Year! Year of the water Dragon apparently, and one supposedly full of turmoil and conflict. But we take the year as it comes. 🙂 It’s also the first time we have to give red packets. And the first person we’re giving it to would be, you guessed it, our little Sophie.
Speaking of my Mum and Auntie, it’s been 2 weeks since they left. And we’re slowly adjusting to the routine of work (mine) and home with Sophie in the picture. Trying to balance work, looking after a little pocket rocket, chores, cooking, cleaning, etc is no mean feat. So we decided to get a cleaner in every fortnight to help us with the cleaning. So that should help somewhat.
Anyway, here’s to more good health and good fortune in the year of the Water Dragon. As an Ox, I am stubborn and resilient. 🙂 So come what may, I will prevail.
Work week 2 has just passed and I’d be lying if I said that I wasn’t knackered at the end of it. I was working 2 days from home (Mondays and Thursdays) and 2 days in the office (Tuesdays and Wednesdays). I went into the office on Thursday last week as I had an important meeting to attend, and also to sort out the project work that I was going to do for the coming weeks.
So a normal work in the office day starts like this:
6:45 – Wakey wakey. Not by choice, but it’s time for Sophie’s 7am feed. The wife feeds Sophie while I cat-nap.
7:30 – Sophie goes back to bed, where she ‘ppffftttsss’ for a few minutes before falling asleep. I make breakfast and have a coffee.
8:30 – The wife gets up, Sophie is usually up and I get ready for work.
9:15 – I leave for work.
17:00 – I usually get home by this time and spend the next 45 minutes or so spending time with Sophie and the wife.
18:00 – We give Sophie a bath.
18:45 – The wife takes a shower while I prep Sophie for bed.
19:00 – I take a shower while the wife feeds Sophie. I cook after the shower. The wife usually does some of cutting during the day so that saves a lot of time.
19:45 – Dinner. And some time to ourselves. If Sophie doesn’t cry.
23:00 – Sophie’s night feed. I usually take this as the wife is knackered from looking after the little pocket dynamo for the whole day.
0:00 – Bedtime. We’re usually asleep before our heads touch the pillow.
And the day starts over again. Honestly, the first day was pretty OK. I came back from work, still energetic and raring to go. The second day was a little harder, and by the third day I was ready to fall asleep on the train. But it was an exception as I wasn’t supposed to be at work.
The first few weeks are naturally going to be tougher as we’re still adjusting to life without 2 extra pairs of hands, and I’m still adjusting to working again after months of inactivity (plus the baby). It’s going to be interesting once I go back to work for 5 days, 3 in the office and 2 at home. Eventually I hope to spend 4 days in the office and 1 at home, but I reckon that’s going to be a long way off yet. One thing at a time I suppose, so for now we’ve got to get into a routine that includes me at work.
Well, it’s the new year and like the start to any new year, it’s time to head back to work. This was a year late, for obvious reasons, and for some reason, it felt good to jump on the tube and take the train into work again. The work schedule is fairly light to start off with; for the first week in January, I worked 2 days from home and 1 from the office. After that, it’s 2 days in and 2 days at home for 2 weeks, then 3 days from the office and 2 days from home after that. That arrange will probably continue for a while, then it’s 4 days in the office and 1 from home.
It’s been a good few months at home with the family and everything. But sometimes I do miss the interaction at work and the client work and discussions. There’s only so much interaction a baby can provide at this point and sometimes you just need that higher lever stimulation and interaction. Plus it will bring in some much needed income into the household coffers!
I’ve only done one day in the office so far, and it’s been filled with meetings and ‘hellos’ and ‘how have you beens’ and so on. Then the questions shift to the baby. Everyone wants to know about the baby. 🙂 But that’s fine by me. Work’s pretty quiet, as expected for this time of the year. It’s the lull before the storm. The next couple of weeks will be busy as clients come back from the holidays and discover just how much work needs to be done.
So the wife will have to take care of Sophie on her own for a few days a week since my Mum and Aunt are heading back in a few days. But it will only be for 2 days a week and we have some of the neighbours for help if she needs it. But Sophie has been a very good baby. She generally feeds well, and sleeps well during the night. The only thing is that she doesn’t take afternoon naps which makes it more difficult for the wife to get some of the chores done during the day.
So we’ll see how well I can cope with the rigours of work and travel, and baby over the next few weeks or so. I think I will be OK and the only thing now is to countdown to the 6-month mark and 200 day mark, then the 1 year mark while living as normal a life as possible.