Archive for September, 2011

Home sweet home

That’s right. I’m back home where I belong. 😀 4 weeks to the day I was admitted into the hospital for my stem cell transplant, I’ve been discharged and sent home. It seems like a long time coming, and now I’ve officially completed my treatment for this blasted thing. What’s left now is to recover, to build up my new, very immature immune system, to continue with the outpatient appointments and to get on with our respective lives. So exciting. 🙂

I left the hospital with the usual dos and don’ts, and a massive bag of medication yet again. But this time, the list of don’ts is seriously longer than the list of dos. Some of the things I can’t do:

  • Go to the cinema
  • Go to a football match (no loss there)
  • Eat shellfish. Bummer. 😦
  • Eat sushi or sashimi. Double bummer. 😦 
  • Go to a restaurant (only for the first 2 weeks or so)
  • Take public trasport
  • Go out (only for the first 2 weeks or so, unless it’s to the park)
  • Go for long trips alone
  • Cook (only for the first 4 weeks or so) 

And many many more. Basically I have to exercise the precaution that I would for Sophie, given that our immune systems are pretty much the same. Although I think she has a stronger immune system than me, as she’s been breast fed and would have had some of the wife’s antibodies in her.

But everything on the list is temporary. And I will soon be able to do most of the things that I normally would. Most people tend to lead fairly normal lives after about 6 months post transplant, so I’ve gunning for that.

So far, I plan to start work fairly soon, albeit part time and from home, otherwise I will remain bored and my brain will continue to fizzle out and disappear. I plan to take a short walk at least once a day to start building up my stamina and strength again. I plan to spend more time with Sophie, who’s starting to smile and play and laugh, and I don’t want to miss another second of that. I’ve already spent enough time away.

So yes, although there’s still a fair way to go to a full recovery, the main treatment is done and dusted. And I am glad and thankful that I’ve gotten through it relatively unscathed. 🙂 We all know who to thank for that! 😀

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It’s out!

Notice anything different about this picture? Have a good look. When I first sent it to the wife she didn’t know what changed. It just became so ubiquitous that she just didn’t see it.


That’s right. The feeding tube is out! Yayy. No more runny nose and random bouts of coughing. 🙂 It feels awesome. It feels like I’m getting closer and closer to getting discharged. And that feels really really good.

After so many months of treatment, it’s finally coming to an end! No more chemotherapy, no more radiotherapy, how can someone NOT be excited about that?? When this all started, the wife and I were talking about the day when I finish treatment for this blasted thing. And it seemed so far away. Now it’s so close I can smell it.

It’s not over though, not for a while. There will still be many many follow-ups at the daycare, more GP visits and potentially more hospital stays if I get an infection or GvHD, but the main part of the treatment is over. 😀 I still have to take a multitude of pills, some for the rest of my life. And some doctors believe that a person’s immune system never quite recovers completely after a transplant. So I may be at risk of infections for the rest of my life.

But one cannot live their lives based on what may happen, but to live their lives to the fullest and to enjoy and cherish every single minute of it. Because it can all change in a single instant. 

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Day +18

It’s been a good few days. They’ve stopped feeding me through the tube, and I’m to maintain my weight at least through normal eating and drinking if I am to go home sooner rather than later. They’ve also stopped the IV cyclosporine, replacing it instead with the oral cyclosporine. More pills, but I’m now untethered from my friends the infusion pump and drip feed machine for the entire day. 🙂

I also found out that I will need all my inoculations again. So everything from the BCG to whatever I had when I was an adult (I can’t even remember). The staff here will prepare a list of jabs and the dates, and I will need to make an appointment with the GP to get that done. Not looking forward to it, not that I hate jabs (after the Asparaginase jab, nothing can be quite as painful), but the effect of the jab may make me very ill for a while. 

More good news, is that the consultant on the wards this month, Dr Kampher reckons that I am doing very very well, and if nothing goes pear shaped, I can leave by the end of the week. That’s if my blood counts continue to go up, I maintain my weight and I don’t have any infections or GvHD.  

He also let me go home for dinner! That was really really nice. 🙂 I got to see baby girl again for a few hours (she was quite cranky) and watched while the wife and auntie bathed her. I wasn’t allowed to bathe her, as she had a tendency to poo on her towels. I wasn’t allowed anywhere near her poo or pee so I couldn’t bathe her. Just in case. But I gave her her pre-bedtime feed, and put her to bed. And put her to bed again. And again. And again. In the end we decided that she wanted guma (grand auntie) and handed her over. 🙂

But it was a nice bit of normalcy in our lives. And it was also a good break for the wife and my mum, who would scoff down their respective dinners to come see me in the hospital before having to rush back again to feed Sophie. Now if only the doctors cooperate and let me do that for the rest of the week it would be ace. 🙂 

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Day +17

My bloods are on the way up! It was 0.6 yesterday (Day +16) so I am technically, not neutropenic anymore. Although they tend to be a little bit more paranoid when it comes to transplant patients, cos it’s not just infections that we have to worry about, there’s also GvHD. But given that it was 0.6, and it was a Sunday and there were not that many people in the hospital, the wife was able to bring Sophie to the Scrubs and I was able to go see her. 🙂

Oh how I missed my little baby girl. I reckon that it’s been at least 2 weeks since I last saw her. I saw her on 8th Sept, for her 1 month celebrations, and then I became neutropenic so I wasn’t able to leave the room. So yes, it’s been 17 long days of not seeing, holding or kissing my baby girl.

The doctors also spoke about discharging me, as it was close to the time. Basically, my blood counts have to come up to a point where they (the doctors) are happy to let me go. This is usually 1.0 for transplant patients, as they’re a little more cautious about discharging transplant patients than they are chemotherapy patients. Also, the dietitian has to be satisfied that I am getting all the nutrition that I need from eating and drinking normally. So for the next few days, they’re not going to feed me via the tube and monitor my weight. If it maintains at a certain level, or goes up, I can go.

The problem isn’t the eating. It’s the tasting. I can’t taste anything. Lasagne tastes like mush, spag bol tastes like mush, even curry tastes like mush. It’s difficult to eat something when everything tastes like wallpaper paste. I have loads of the ensure calorie drinks, so I’ll keep it up and drink 2 of those a day to keep my calorie intake up. I can’t wait to be discharged and be back home. Hopefully from then on, things will return back to normal, albeit with the regular trip back to the Funhouse for checkups, which will get less and less frequent. 🙂

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Up

My blood counts are on the way up! :D. The neutrophil count hovered at about 0.1 on 21 Sept, then went to 0.2 on 22nd Sept. Platelet counts are up as well, and so is the haemoglobin count. Excellent. This means that the stem cells have rooted down and started producing white blood cells. And my body is slowly but surely recovering from this latest ordeal.

The doctors did say that I would know when my neutrophils started coming up. Sure enough, the mucositis that I had in my throat cleared up literally in a few hours and all the little nicks and bruises I accumulated over the last few weeks looked better overnight. That’s when I knew that I had neutrophils and platelets.

I still have the feeding tube in my nose, and that will only come out when I can manage all my meals orally. Right now they’ve reduced my feed from 1.5 kcal a day (so my whole daily intake) to 1.0 kcal a day. They’re looking to reduce it further to stop it completely this weekend so once that’s done, the feeding tube will be removed as well. 

Now all we have to do is wait for it to hit 0.5, and then I can technically go home. But it all depends on the consultant. Some consultants are happy for the patient to be discharged when their neutrophils are at 0.5, while some will rather play it safe and wait for it to hit at least 0.7 before allowing the patient to leave.

I reckon it will be round about the middle of next week, and it will be good. 🙂 Can’t wait. 

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Hair

I have lost almost all of my hair. The radiology consultant did warn me that the hair loss will be total (i.e. over the whole body) but will be temporary. This in itself is old news, as I was losing hair during course 1, and was mostly bald for the better part of the year. But this time, the hair loss was astounding. I went from a full head to 99.99% bald in 2 days!

I did plan on cutting it short before it fell off, but thinking about it, if I had cut it to a point where it’s very very short (spiky), the hair would still fall off and it will create a mass of mini needles ready to prick me where ever I go. Not very pleasant at all. So I decided to leave it as it is, and to just let it fall.

When I first lost my hair during the first course, I decided to stay bald. It took some time to get used to it, but I quite enjoyed being bald. The only drawback I could think of was that my head got very cold in winter, and sunburnt in summer. Plus the wife didn’t like it very much. In the end, I went for a short cut, one that I could do myself instead of paying someone £8 to do it for me.

The radiation also affected my facial hair. It’s starting to fall off as well (not that I had a lot of it anyway). That’s a good thing. Since Sophie arrived, I never had time to shave and ended up with a chin and upper lip full of wire-like bristles. I always joked that I could use it to scrub potatoes!

The hair is still falling off other parts of my body, but I’m not too fussed about it as hair will grow back. The only hair that I hope won’t fall off are my eyebrows and my eyelashes. Eyebrows cos it will create a very strange look (imagine someone without eyebrows) and eyelashes cos they just take forever to grow back. So far, they’re not falling off. Yet. Hair loss is the least of the side effects of radiation therapy, and is probably the one of least concern. I haven’t had any of the others, and for that I am grateful. 

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Day +12

Any time now. That’s right. Any time now till my blood counts start creeping up. My neutrophils were still at 0 on Day +11, and I needed a platelet transfusion on day +9 and day +7. and got a blood transfusion today. No wonder I was feeling breathless after a short shower.

Looking back at the blood counts, it’s hard to believe that I’ve been neutropenic since 10th Sept, and I’ve had 0 neutrophils since 15th Sept. I think it’s the longest stretch that I’ve been at 0 neutrophils, although I did manage to catch an infection. Apparently the doctors aren’t even sure that it’s an infection. They did blood cultures, nose swaps, urine tests, stool culture, etc and were not able to find anything. So not too sure what it was. 

I’ve also started taking solid food. Of course, when I say ‘solid’, I mean mush and paste-like food. The nutritionist recommended that I try some jelly or yoghurt (the ones without the active bacteria). So I got some yoghurt with the fruit corners, and started eating those. I also had some Wheatabix for breakfast. Man, to think that someone can miss having solid foods so much.

The only problem is that I can’t seem to taste anything. Or rather, my sense of taste seem to be rather dull lately. I can taste, but only very slightly. So my coffee tasted like coffee, but very very diluted coffee. But that’s probably because it’s hospital coffee, and it is very very diluted. But I am glad to be able to eat solid food, even if it’s just mush or paste-like food. I’ve been on the nutrition drip for the last 4 days and it’s not satisfying at all.

I can’t wait to get home. The wife’s telling me that Sophie is more alert and more active now. She can smile, play and make baby sounds. She’s also started to look around a lot more and is spending more time awake. Man, I missed out on all of that. 

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