I made it home (again)

Got home yesterday afternoon and am now relaxing in front of the tv. My energy levels are quite low, so I won't be up to much over the next few days, except eating, sleeping and drinking.
Let's hope I can stay out of hospital for a while this time. Although I have to go back for an appointment on Wednesday just to see how I'm doing.

Going home again

Looks like I'll be going home today. The doctors need to have one more look later this morning, but they seemed quite confident yesterday that today would be the day. Certainly nothing has happened overnight to change my condition.
I still have a hacking cough that doesn't seem to be getting better or worse. Haven't had any fevers in a few days, so it's worth trying things at home again.
In just a few hours, I'll be sitting at home, dog at my feet, sitting watching tv in my coat, hat and scarf. I wonder if I'll ever warm up again?

Back in hospital

Well, here I am again. Back in the familiar confines of the haematology ward. I wasn't feeling that good after I woke up yesterday, and then in the early afternoon, my temperature spiked so I was asked to come in.
I'm back on intravenous antibiotics and will be here probably until Saturday.
A small setback, but not unexpected, so I'll just roll with it.

Home sweet home

I've been home almost two days now and I have to say it's lovely to be back with my family. I do miss the protective cocoon of the hospital, so it's going to take a few days to adjust back to home life. The big thing is the temperature - I am constantly cold! If I could, I'd turn the house heating up by 10 degrees, but Sue says it's already too warm! Not sure what temp they keep the hospital at, but I've been spoiled with heat for the past month.
The other thing I worry about is infections. Coming from a nice, isolated room to an environment with a dog (and kids) takes some getting used to - so I'm paranoid about bacteria!
I also think I've picked up a little cough, but it doesn't seem to be getting worse. I'm due to visit the docs tomorrow, so I'll tell them about that. I'll be seeing the docs once a week for the next few weeks (more frequently if I get a fever or feel unwell).
So, overall, so far so good. I feel a bit weak and am not up to much at the moment, but little by little I feel like I am getting stronger. It won't be long before I'm going for walks outside.

Here are some pics taken last Sunday when Sue and the kid came into hospital to celebrate Kieran and my birthdays.....

Going home

The docs have been to see me and given their thumbs up to go home. Good news, but I'm feeling apprehensive- maybe it's because I'm leaving the protective environment of my room and going back out into the big, bad world.
I still have a long way to go and could end up straight back in hospital at the slightest sign of infection or fever. My immune system will be very low for a few months, so I'll need to be very careful.
Still, it'll be great to be back with Sue and the kids and I'm sure I'll adjust to home living in no time.
Forgot to mention in earlier blogs that my hair started falling out in clumps at the end of last week (as predicted, three weeks after chemo), so Sue shaved it on Saturday. This is the fourth time I've been bald. It's good to see my other persona back to use my extensive hat collection.

Birthday

It's my birthday today. It's also my son's birthday and that of our dog, Rosie. Feb 4th is also like a birthday to me from now on, as it's the day my new immune system was born (day 0). It still looks like I'll get home tomorrow-  which is a nice birthday present to get.
My bloods are climbing every day and it's all looking good. I have felt more nauseous over the past couple of days and I think my energy levels are down a bit (I want to sleep a lot). The docs are not surprised-  they say as my bloods rise, my body is doing a lot of repairing, especially in the stomach and gut lining.
We are also seeing what is suspected to be mild graft vs host in the form of, how shall I put this, green poo. I was a bit taken aback, but on reflection it's good to see a bit of GvH as it's taken as a good sign. In my head I'm picturing the new immune system fighting the lymphoma too - little Incredible Hulks in there fighting the cancer and turning everything green. I wonder can I keep the green stuff going until St. Patrick's Day?

Appetite

I haven't had much of an appetite for the past three weeks. In fact, for much of the time, the sight and smell of food turned my stomach. However, I managed to force it down because food and nutrition is really important when building new bone marrow. Plus, I wanted to avoid even thinking about a food tube- they're going to get the food in one way or another, so I opted for the easy way. Call me picky, but the thought of a milkshake going up my nose and down to my stomach wasn't appealing (unless I'm having a Kranks burger in Limerick after a lorry load of Guinness- but that's a different story for a different time 😊).
Anyway, my appetite is slowly starting to come back and I'm almost enjoying food again. Yesterday's dinner was macaroni cheese and I wolfed it down. Now if they could only stop the dinners looking like a bowl of dog puke, it might help even more......

Newsflash: I have neuts!

Just got some good news:- my neutrophils have finally started to rise. This means my risk of bacterial infections is reducing and, if I get no more fevers, will go home as soon as Monday.

Another fever

Yesterday was a strange day. I didn't have the best night's rest the night before (which also happened the last time I had a blood transfusion)- I was feeling flushed and headachy all night. So I woke up feeling flat and that lasted until the afternoon when a fever kicked in. Again, the team jumped into action and took blood cultures to see if there are bacteria on the loose. I switched back to intravenous antibiotics, took some paracetamol, had a snooze and felt better after that.
As I write this, it's the morning of Day 14 and it seems to have stabilised as I feel ok again.
I found myself being very negative yesterday when I wasn't feeling well- worrying about what if I had caught a bad virus or whatever. That quickly passed once I felt better and I'm back to my sunny disposition again.
I wonder which Trevor the nurses prefer - the quiet one, or the one that jokes every time they enter the room. I'm sure some of them think I'm nuts, but hey, I have to stay entertained somehow or it gets very boring in here 😀

Counts moving up

Yesterday was a great day. I found out that my blood counts were finally rising. Day 11 - exactly the same as with my last transplant. I doubt I'll be out as quick this time, though, as they are either rising very slowly (platelets and white blood cells), not rising at all (neuts), or even still dropping (haemoglobin). A real mixed bag. Still, I am upbeat because it means the new marrow has engrafted and is producing something.
It's now 7am on Day 12 and I'm already having a blood transfusion. Two more pints for me today (these were supposed to be given to me yesterday, but they held off because my haemoglobin had raised slightly at that point).
At least I finally get to use my "count from sesame street" voice, ha ha ha ha haaaaa.

Platelets and blood- food of kings

Had some platelets last night just to top up my low levels. This time I got them at 10pm, which is much better because once I got the antihistamine shot that comes with it, I went out like a light and slept soundly all night.
I'm going to have some more blood this morning, as my haemoglobins are getting low. I think I'll start laughing and talking in a cartoon vampire's voice when the nurses come in, just to see how they react.
Day 11 today. Still feeling relatively comfortable. No sore mouth, energy is low and I get occasional headaches. So not bad at all.
Just waiting for my blood counts to start rising and for my hair to fall out - they say slapheads are sexy, so I'm looking forward to that phase of things 😄

Some pics

The kids came to visit again today. Not sure how much more action my bed can withstand (insert smutty joke here 😁)!

Sleepy head

Yesterday was Saturday, so the kids were able to come with Sue to see me again. It was great to see them again but within five minutes I was worn out! Kieran, especially, was full of beans and hopping around the place. Before I knew what was happening me, Aishling and Kieran were on the bed at its full height and tilting down at an angle like a dump truck-  I thought we were going to slip out the bottom of the bed.
The whirlwind lasted 30 minutes, and according to forecasters is due back today and a few times this coming week (because it's half term).
Today is day 10 and I'm still going well. My temperature is normal and I am pleased to say I have nothing major to report. I suspect that I might need more platelets today. I know they are crucial for me to not bleed, but the drugs they give me to stop any potential reactions to the platelets make me sleepy and so I don't like it. As usual, though, I will just roll with it and if I'm asleep all day then so be it.

The fever finally arrived

Well, I lasted until day eight (yesterday) before the fever struck. I reckon that was a good run. So do the docs.
I blame the platelets I got yesterday! It may have been a coincidence, but I was fine all day, then I got some platelets, had a snooze afterwards, and woke up with the fever. It wasn't too bad at 38 degrees, but it was enough for the medical team to jump into action. They are a really good team anyway, but they were very slick in handling the fever- during the next couple of hours I had blood cultures taken, started on intravenous antibiotics and went for a chest xray. It is comforting to know I'm in such good hands.
So, here I am on the morning of day nine and I am feeling ok. My temperature is back down to normal (for now- it's been up and down all night, but is so far being managed with paracetamol) and I now have an antibiotic injection three times a day on top of all the other meds I have to take. So it's still going well for me and I have started to turn one eye towards the next phase of the transplant- when my bloods start to recover and I start to see some of the effects of GvH (graft vs host). I wonder when that will start. This coming week, I hope.....

Blood transfusion

I had two pints yesterday, of something that is creamy and thick and people say it's good for you. Not Guinness,  but blood ☺
My hemoglobin levels fell below a certain level, I guess one of the reasons that I was feeling tired, to they have topped me up.
I felt weird afterwards - all the way through to this morning I have had a low grade fever, felt very bloated and had a headache. So i didn't have the best night's sleep and I'm worried that I won't be in the mood for the party I've arranged with the nurses later.
Other than that, it all continues to go really well. The predicted infection and fever still hasn't happened, so I continue to confound the medical staff here. While that is good, one drawback is they won't give me paracetamol for my headache because they are saving it for my fever (you know, the one I'm not going to get).

Lack of energy

Just woke up to day seven, and all is relatively well. I have been completely neutropenic for the past four days and, so far, none of the predicted fever and sore mouth has happened - I am thankful for that as it's not very nice.
In fact, the key thing these days is a lack of energy. Getting up and having a shower in the morning is a struggle that leaves me exhausted afterwards. Fortunately,  I've been able to cancel my plans and rest in bed afterwards ☺
During my last transplant, my blood counts started to rise from day eleven. I wonder if I can beat that this time.....

Bits n pieces

I woke up feeling pretty decent again this morning, although a couple of ailments have crept in since yesterday morning- diarrhea and spots. While these might sound minor, if not properly treated and nipped in the bud they may fester and cause problems. The spot is on my nose, and the diarrhea is, er,  well you know where.
So I'm on antibiotics now for the spot and I'm keeping a roll of toilet paper in the fridge to help soothe my nether regions (not really- I have a topical ointment to help there but I must remember not to mix it up with the cream for my chapped lips, again).

The aul doss

My Gran-auntie May used to say "you can't bate the aul doss" (for my non-Irish friends: bed is great). For the four years I lived with her while going to university, I totally agreed. We'd meet at breakfast sometime between nine and ten and then, more often than not, go back to the aul doss for another hour or so. God knows how I graduated (but I did!).
I was thinking about this at 6.30 this morning during my nurse's visit - there was a storm outside, the wind was howling and rain beating off the window. As soon as the nurse finished, I rolled over and went back to sleep.
I've had another comfortable and peaceful night and I'm feeling good so far, probably better as the effects of the chemo subside. I keep thinking that this can't last, but I am really grateful that so far (now on Day 4), I have no real concerns to report. The docs told me yesterday that I am now neutropenic,  and to expect an infection/fever or two as I have no immune system to protect me for the next 10 days or so. So each morning I wake up feeling OK,  I thank God for another good day and then plan my busy schedule. For everyone traveling to work in the UK and Ireland in the storm this morning, stay safe - even better, go back to the aul doss.

The waiting game

It's 8am on Sunday morning and all is quiet on the ward. The nurse came for my observations at 6.30am - I said she looked tired and ruffled, but I don't think that was the observations she meant.
There's a bit of hustle and bustle outside the room as they bring breakfast. I think I'll have bran flakes, toast and coffee (again).
Getting back to my observations, they are all happy with my progress so far. Nothing worrying like a fever or sore mouth to report (but they all look at me knowingly - it's just a matter of time). My appetite and energy levels have taken a hit since last week's chemo. I also suffer from flashes of nausea - so even though I may be hungry, I never know how a meal is going to go until it turns up and I look at it. Breakfast should be OK,  but the cocktail of 100 tablets they bring afterwards tends to turn my stomach.
The kids turned up yesterday and it was fantastic to see them. They were fascinated with my moveable bed, and before I knew it I was floating 6 feet off the ground as the kids raised it to the highest setting. Good fun for them, but it didn't help my dodgy tummy.

Now half German

I received the stems cells at 6pm last night and thanks to the medication they gave me with them, I've been asleep since. It all went pretty smoothly, und now ich bin waiting zu recover.

Somebody hung this on my door during the transplant ... maybe it was the little people keeping an eye on me.

Feeling a bit flat today, but I guess this is how it will be for the next couple of weeks. I did find a new use for the puke bowl though!

As usual, thanks for all your prayers and support. Danke schon!

Transplant Day

And so it arrives-  the day My donor stem cells turn up and get put on a drip for me to take in.
The cells themselves are enroute from Germany and are due into Heathrow at noon. By the time they are brought to the hospital, checked and counted (not one by one by hand, I presume!) It will be between 4 and 6pm before I see them.
Not much else to say until then, except to note that the chemo has caught up with me and I feel like I've been in a battle- nothing major, just the usual gritty feeling after chemo. It'll pass.

Day minus 2

Everything in the transplant is geared around Feb 4th - my stem cell transplant day (and also, coincidentally, World Cancer Day). Today is referred-to as Day Minus Two. Thursday is Day 0, and hopefully sometime around Day 14 I will start producing new blood cells.
Today is also a rest day from chemo, but I'll have one more tomorrow (melphalan) before the transplant. I do have to continue taking the immuno-suppressants today and I think they are making me a bit shaky (or maybe it's all the chemo finally catching up with me).
I've been at home all day, but go back to hospital later this evening and I'll stay there for the rest of the time, until my immune system is strong enough for me to leave. Who knows when that will be - I'm guessing three to four weeks.
Being able to get home these past few days has been great, but I'm now moving into the next phase where I will need to be under the careful eye of the medical team.

Getting to the bottom of the matter

I'll have to give up the auld transplants one of these days-  they keep giving me aches and pains.
Today's problem is constipation-  I have to say I've never fought a battle like I did this morning. Hope it's not like that again tomorrow, or I'll be singing Ring of Fire by Johnny Cash (incidentally, that song was playing on the radio in the delivery room when Sue was giving birth to Kieran- she wasn't impressed but I thought it was funny).
Otherwise I'm still going home every day after chemo and am feeling generally fine. Starting to feel a bit more tired and not as active, but that's to be expected as the chemo does its thing.
I also start on the immuno-suppression drugs today. This is to ensure the stem cells aren't rejected on Thursday. It also qualifies me to represent Ireland in the World Transplant Games in the future when I'm up and running!
On a more serious note, the amount of support, messages and prayers that are being said all around the world for me is such a boost. I really am lucky to have such wonderful friends and relatives. I do believe the prayers help and your support has helped me get through this so far, so please keep it up.