Archive for May, 2011
Right. As I’ve now got a donor for my stem cell transplant, I’m facing the prospect of spending the next 3 months at home, only going to the hospital once a week to get my lines cleared. That’s right, no more long hospital stays, no more long chemotherapy, no more hospital food, no more hospital routine. At least until I check in for the transplant. 🙂 The consultant may recommend a few mild outpatient chemotherapy sessions (as an outpatient) just to make sure the Leukemia is in remission but that’s about it.
It’s weird, as I’ve never been able to plan anything more than a few weeks in advance cos I’ve always had to go into the hospital for the next course of treatments. This time, however, there’s more time and there’re loads of things to do. Plus I will mainly be at home for the third trimester. And that’s good!
It goes without saying that this will take up the bulk of my time (and the wife’s time) over the next 3 months. There’s the nursery to prepare, large items to purchase, furniture to assemble, cleaning to do, bits of knick knacks to buy, classes to attend and loads of other small things to do.
I’ve also got to learn to cook and prepare some pre- and post-delivery foods for the wife. Vinegar Pork Trotters and ginger fried rice anyone? Being absolutely clueless about these things, I’ve had to rely on the internet for recipes and tips and tricks so any recipes and tips would be greatly appreciated.
Transplant preparation actually start a few weeks before the actual admission. Apparently there are loads of checks and tests to do to the patient before they can actually recommend and proceed with the transplant. In the words o the consultant, “it’s a scary disease, it’s a scary procedure, we talk to you to scare you, and we scare even more by doing all sorts of things to you.”
There’re also loads of forms to fill, counseling sessions to sit through, procedure sessions to go through, just to make sure you know what you’re going to go through. Sounds very very big time, but then again, it’s a very risky procedure. So it’s probably worthwhile staying awake at least through some of it.
We’ve got a couple of people coming over to visit us too. The wife’s brother and his wife will be coming over in the next couple of weeks. The wife’s childhood friend will also be coming over, with her husband and their baby for a quick visit. The wife’s taken a couple of weeks off for that, and it will be quite an adventure. 🙂 It’s great that I’ll be home and relatively OK during that period so we can all hang out and do stuff together.
In addition to the food that I have to learn to make for the wife’s pregnancy, I’ll need to beef up for the transplant. The admission period for the transplant will be about 6 weeks, and for 2 weeks of that, I’ll be very weak and be in a semi-conscious state. So all the nutrients I need will be given through the Hickman line. So I will lose quite a bit of weight during that time. The best thing to do will be to eat and bulk up as much as I can before heading in, and to keep fit and healthy by walking more, doing some light exercises and just not sitting/lying around too much.
The plan is to work a little more during the 3 months I’ll be at home. I may even go into the office 1 or 2 days a week. I guess they’ve been waiting for me to get into the office for meetings and planning sessions but it hasn’t been able to happen yet so I’ll try to make this happen this time round. This may sound strange, but I do miss getting into the office every day.
Good news! The consultant informed me that they’ve found a suitable donor for my stem cell transplant! This is great news and offers the best possible long term prognosis for someone with this disease.
It’s all not confirmed yet, but this person (who’s from Taiwan) has to pass a health check to ensure that he/she is physically able to cope with the harvesting process. They also need to be willing to donate their stem cells. Some donors will change their minds at the last minute so we can’t discount that from happening.
The consultant wanted to do the transplant in August, if all the stars were aligned and everything went well. But August is when Peanut is due so I managed to convince him to push it bask by a month, to the middle of September. Although he did say that if everything went smoothly and it’s looking to happen in August, he would strongly push for the transplant to happen in August. His responsibility is after all, to me.
The transplant itself is a very risky procedure. I’m to undergo intensive chemotherapy and radiotherapy for 2 weeks before the scheduled transplant. This is to kill off all my bone marrow. So I literally can’t make any blood cells at all. Then they will infuse the stem cells into my body, and they will find their way to the bones and start making the bone marrow tissue, which will then start making blood cells.
The period between the chemo and radiotherapy and the infusion is the most dangerous time. I will be defenseless against any infection. This passes after a week or so, but after that, there’s the risk of Graft-Vs-Host disease (GVHD). This is where the donor immune system thinks that the recipient (i.e. me) is a foreign entity and attacks it. This can be controlled if the doctors can catch it quickly enough. If I get through all that, I will have a new immune system and (maybe) blood type. It can take up to 2 years before the new immune system is strong enough to deal with the rigors of daily life and I think I will fall sick very often. But it’s hope. Hope that I intend to hold on to and I will get through this. 🙂
I received a package from Sweden the other day. It was from a good friend who lives outside Gothenburg in Sweden with her 2 kids (Matteo and Bianca) and her partner Shay. The wife and I stayed in her little guest hut for a couple of weeks in the summer last year. I’ve known her for nearly 10 years now and my first ever real job was working with her in a consulting firm. I never thought of her as the children type, but now she has 2 lovely kids. They were a joy to be around when we were there and we miss them so much.
We went over to Sweden in June last year so naturally I celebrated my birthday there, at a restaurant called Salt and Sill. Sill means ‘herring’ in Swedish, and we had loads of it in Sweden. It’s an acquired taste, but I like it. I have to make a trip down to Ikea one day to get some. 🙂 The wife and I took a picture at the restaurant that day, and that picture comes with me when I am in the hospital. It’s a reminder of better times, and what we are striving for.
We also took part in the mid summer festival, and helped put up the maypole. It was completely different to anything we’ve ever experienced before. And it was a lot of fun.
They sent over 2 bracelets with our names on it, as well as a heart. I’m not sure if Karin made it or her kids made it, but it did bring a smile to both our faces.
Matteo also drew this for us. It’s quite nice although I can’t really figure out why the wife is bigger than I am. She comes up to my chest!
She also sent this jigsaw puzzle over. She probably reckons that I will be bored and have too much time in the hospital. 🙂 Anyway, I’ll finish it, and dream of being in a place like this in a couple of years, with a glass of champers. That’s me sitting in that hammock over there.
A massive massive thank you to my lovely family, who contributed and shared to help us get the stroller set for Peanut. It’s a huge saving for us and we can’t thank you all enough. 🙂
Here’s what we’ll be getting. 🙂
The Bugaboo Bee pushchair, comes with everything you see here. The set includes the shopping basket (in between the wheels), the canopy (the coloured thing at the top) and the rain shield (not shown). Ordinarily you’d have to pay for these, but it’s included in the set. We tried out loads of buggies and pushchairs, and we found this to be have the best features of the lot (there are better ones obviously, but they cost much much more). It’s light, compact, nimble (for moving around London), easy to fold and extend, fully reclinable, forward/rearward facing, etc.
The cocoon, to keep the infant warm on cold days and nights. This is mainly used for infants, as they’re not supposed to be sitting up straight until they can fully support the weight of their head.
The foot muff, used when the baby can sit up and support their head on their own. This keeps the baby warm on colder days. This is the base set, which is enough for most days. But for colder days, you can even opt to buy a sheepskin lining! That’s a little extravagant.
The Pearl. Comes in many many colours, some very manly, some not so manly. This carseat can be attached to the Bee (with the included attachment kit) so it’s very convenient to move between the car and the pushchair. This is actually an upgrade from the regular model that comes with this set. The reason we are upgrading is that this seat fits the larger ISOFIX base that we can use for when Peanut is older, and needs a larger car seat.
Peanut says Thank You to her extended family as well. 🙂 We’ll be sure to let her know that all of you contributed to it.
The problem with buying this is the choice of colours. We like the dark khaki colour (as seen in the pictures above), but the blue and yellow colours are very nice too. We are planning for more babies, so something like “pale pink” won’t work so well if we have a boy next time. So we can’t really decide. So if you have a favourite, you can let us know by completing the poll below. 🙂 To see all the colours, you can head over to the Bugaboo website and click on “compare models and colours”.
The NHS is something that the people in the UK love to hate. It costs billions and billions annually to run, and most people don’t really need or see the benefits of the system. For me, it’s been pretty good so far, besides the need to wait for a bed. But then again, I can’t recall a public health system that don’t require the patient to wait for a bed.
Technically, the services of the NHS are only available to residents of the UK. But there have been people coming over to the UK for treatment (since it’s free) and as one of the key charters of the NHS is to provide healthcare to everyone, they can’t refuse treatment to anyone. It’s all well and noble and everything, but it’s also a massive drain on already stretched resources.
There are other benefits to the NHS that many people don’t know about. Prescription medications are a good example. Under the NHS, we pay £7.25 for each prescription medication, so if the doctor prescribes 2 different types of medication, you pay 2 x £7.25, no matter how much the meds costs. So it won’t make sense to get a prescription for paracetamol (which you can buy over the counter for 99p) but it makes sense for most other drugs, like heart medication or some antibiotics, which can cost hundreds of pounds.
The wife, being pregnant, gets all prescription medication and dental treatment free from the NHS. This goes on throughout her pregnancy, and for a year after she’s given birth. Excellent isn’t it? I also just found out that as a cancer patient, I get my prescription medication free as well. For me, it’s free over 5 years, and after that, if I am cancer-free, it stops.
Honestly I have been pleasantly surprised by the quality of the treatment and the facilities since I’ve been diagnosed. Of course, we’ve also been very fortunate to be living very close to one of the best NHS trusts in the country and what probably is the best Haematology department in London. Can’t imagine what it would have been if we had moved somewhere else.
The list of things that I react to seems to be getting longer and longer. I was given the 3rd and final (thankfully) jab of L-Asparaginase the other day. It’s part of the Intensification phase, and happens 3 times throughout the phase. Within 5 minutes, my face started feeling hot, my eyes felt very scratchy, welts started appearing on my back, neck, legs and arms, and my face started swelling.
Naturally I rang for the nurse and she called for the doctor, who conveniently happened to be just outside the room. By that time my face had swollen to a point where I looked like Ben (The Thing) from the Fantastic Four. I also had difficulty swallowing, which meant that the swelling had gone to my throat. This was quite an issue as it could restrict my windpipe and I could have difficulty breathing. The doctor prescribed some Piriton to control the allergies, and some Hydrocortisone to bring the swelling down. These were all given intravenously so it took effect almost instantly.
That was not the only problem though. I had abdominal pains and diarrhoea as well. Not sure if they’re related, but they also prescribed some Buscopan (for the abdominal pains) and painkillers to control the pain. The nurses were great. They would pop in every 10 minutes or so to check on me, just to see if I am OK and just to see if I needed anything. This continued through the night until the swells, rashes and pains went away. Hats off to them I say.
To be honest it’s probably the worst I’ve felt since treatment started. And I am pretty lucky in that regard as some people feel generally crap every time. More worrying is the increasing list of things that I happen to be allergic to. It’s something that needs to be discussed with the consultant on Monday (when they’re on their rounds) as I am due for some chemotherapy drugs that I’ve had before (Vincristie, Ara-C, etc) and I may get a reaction from them. It may just be that they may administer the drug, and see if there’s a reaction and feed me Piriton and monitor me carefully if there is. Not the most comfortable for me, but if it’s just a rash, it’s not all that serious.
Yes! I finally got around to getting my meal vouchers for the restaurant. That means no more crappy ward breakfasts and lunches, if I can manage it.
The vouchers are pretty simple. I can go down to the restaurant for 2 meals a day, which includes the salads and hot meals, soups, vegetables and potatoes, but doesn’t include things like confectionary, crisps and packed foods (e.g. sandwiches and so on). It isn’t bad, although the selection can get quite routine after a few weeks, it’s heaps and heaps better than the slop we get in the wards.
The vouchers are valid until the mid June, so as long as I am in the hospital, I can conceivably go to the restaurant and get something to eat. They had freshly made Chicken Jalfrezi and popadums the other day. Fantastic. I haven’t had that in ages. And since they’re all freshly made every day, I’m perfectly OK to eat it. I went down for breakfast as well, and had some hash browns, sausages and bacon. Yummy.
The only thing that’s feels a bit strange is wheeling the infusion pump with me when I go to the restaurant. It does draw some stares, but since it’s only a saline solution (for now), it shouldn’t be that big an issue getting it down there. When the chemotherapy starts, and runs for 24 hours, they may not let me take it down as they are afraid of an accident, and the infusion getting on someone. Although nothing screams ‘stay away from me’ quite like a 1-litre bag of a yellow solution wrapped in a red bag.