Realisation
Just a normal day today. I went into work again to put in some network infrastructure change requests to our IP-VPN supplier (boring IP stuff) and then the office threw a barbie for our outgoing MD. So it was burgers and beers (although not for me) all round and a perfect way to spend an afternoon at work! Peter, I don't know if you read this blog thingy, but if you do then thanks for everything.
Nipped to the shops on the way home and, when I finally got back to the house, the actual realisation that I had beaten this evil Hodge fecker again kicked in for the first time. 16stone of burly, pudgy bloke then proceeded to have a mini-breakdown for 5 minutes. The relief just flowed out of every pore. I guess it was just the fact I was doing "normal" things.
I am going to see Erin and Rebecca grow up.
I am going to get old.
I will see Celtic win a major European honor... (maybe that one is asking abit much)
I do have a future.
I'll have to cancel that funeral I had mentally planned a few weeks back.
Veronica, unfortunately for her, is stuck with me. No easy way out for her now.
19 days to transplant and frankly it can't come quick enough.
The light at the end of the tunnel is get brighter and it's not the light I thought I was going to be seeing!
Wednesday, May 30, 2007
Hi Ho, Hi Ho...
It was off to work we went this morning. This was the first time I'd been into the office to do some actual "work" for about three months. There are one or two things I really want to get cleared up before I go in for the SCT. I've been putting off doing them until I was strong enough and also because I haven't been 100% sure the transplant was taking place until I spoke to my oncologist on Monday. It was good to a be a part of the furniture again... even if it was only for a half day and things have certainly changed. New faces everywhere but thankfully plenty of old familiar ones... some of whom where actually pleased to see me!
I got some great news about a work colleague who is also off ill. She was unfortunately struck down with Guillain Barre Syndrome in February but is now making a really good recovery. I think about her often and pray she makes a full and speedy recovery soon and gets out of hospital. I'm only going to be in there for 4 - 6 weeks; she must have been there for 4 months so far! Two people with different diseases of the immune system in the one company must be pretty rare.
More good news came yesterday when I read Chris' blog. My fellow Hodgkins buddy has been through the mill this last week thinking he needed another dose of chemo and that maybe The Hodge was still floating around. He went to the hospital yesterday to be told he didn't need the chemo and that The Hodge look like it has gone! Just a wee three week course of rads to seal the deal of the clean PET and CT scans that he got. Too be honest, if it was me, I would have initially been a bit pissed about worrying for a week about chemo I wasn't going to get and then just totally relieved to get the clean scans! I'm over the moon for Chris, Vicky and the children.
Woo Hoo! The good news just keeps flowing and long way it continue. It's been a helluva a week already.
Now to just get Kelly clean scans for the hat-trick!
It was off to work we went this morning. This was the first time I'd been into the office to do some actual "work" for about three months. There are one or two things I really want to get cleared up before I go in for the SCT. I've been putting off doing them until I was strong enough and also because I haven't been 100% sure the transplant was taking place until I spoke to my oncologist on Monday. It was good to a be a part of the furniture again... even if it was only for a half day and things have certainly changed. New faces everywhere but thankfully plenty of old familiar ones... some of whom where actually pleased to see me!
I got some great news about a work colleague who is also off ill. She was unfortunately struck down with Guillain Barre Syndrome in February but is now making a really good recovery. I think about her often and pray she makes a full and speedy recovery soon and gets out of hospital. I'm only going to be in there for 4 - 6 weeks; she must have been there for 4 months so far! Two people with different diseases of the immune system in the one company must be pretty rare.
More good news came yesterday when I read Chris' blog. My fellow Hodgkins buddy has been through the mill this last week thinking he needed another dose of chemo and that maybe The Hodge was still floating around. He went to the hospital yesterday to be told he didn't need the chemo and that The Hodge look like it has gone! Just a wee three week course of rads to seal the deal of the clean PET and CT scans that he got. Too be honest, if it was me, I would have initially been a bit pissed about worrying for a week about chemo I wasn't going to get and then just totally relieved to get the clean scans! I'm over the moon for Chris, Vicky and the children.
Woo Hoo! The good news just keeps flowing and long way it continue. It's been a helluva a week already.
Now to just get Kelly clean scans for the hat-trick!
Monday, May 28, 2007
Remission baby! Yeah!
I guess the title of this post kinda gives it away abit! We went for the scan results today to get the full story about what is going on inside me. Beyond my wildest dreams my miracle working oncologist says, calm as you like, "Yup. Your scan results are fine. I'd put you in clinical remission... but you're still going for SCT to seal the deal.". No problemo!!
I don't know about Veronica, but I was completely stunned. I was only hoping for some sort of shrinkage in the chest area going forward into SCT to prove I didn't have chemo resistant disease... I never dared dream about being put into remission. Looks like my onc has pulled the miracle out of the bag and, as Bender says, The Hodge can Bite my Shiny Metal Ass. We've beaten the bastard again and this time it is going to stay beaten.
We left the hospital and celebrated in typical fashion... a massive full Scottish fry up breakfast with all the trimmings and then a nap when I got home.
It's hard for me to explain the feelings I have right now. I've been here before and had it all taken away from me. I'd say it's just utter and absolute relief. No joy, no ecstasy, just pure relief!
I guess the title of this post kinda gives it away abit! We went for the scan results today to get the full story about what is going on inside me. Beyond my wildest dreams my miracle working oncologist says, calm as you like, "Yup. Your scan results are fine. I'd put you in clinical remission... but you're still going for SCT to seal the deal.". No problemo!!
I don't know about Veronica, but I was completely stunned. I was only hoping for some sort of shrinkage in the chest area going forward into SCT to prove I didn't have chemo resistant disease... I never dared dream about being put into remission. Looks like my onc has pulled the miracle out of the bag and, as Bender says, The Hodge can Bite my Shiny Metal Ass. We've beaten the bastard again and this time it is going to stay beaten.
We left the hospital and celebrated in typical fashion... a massive full Scottish fry up breakfast with all the trimmings and then a nap when I got home.
It's hard for me to explain the feelings I have right now. I've been here before and had it all taken away from me. I'd say it's just utter and absolute relief. No joy, no ecstasy, just pure relief!
Sunday, May 27, 2007
Chemo Brain... does it ever go away?
Today we arranged to treat some good friends and their kiddies for lunch. Claire and Steve have been so supportive over this last year and have dropped everything on a good number of occasions now when I have had to rush into hospital and things of that nature. When you think that they have two kiddies the same age as ours it can't have been easy on them. Anyway, this was just our little token way of saying "Thanks"... we'll try and get them out for an evening meal without the children soon.
So we set out to meet them at the restaurant (well, pub with children's play area) only to discover when we got there that it is closed for renovations... not a good start. 5 minutes of humming and ha-ing and we choose the next decent pub lunch place and set off.
I'm thinking to myself that the kiddie mobile is running really well after its recent service and that my mechanic has really done a good job. The pedals feel soft and responsive and I have a quick look down at them. I look back to the road and then look back down again.
Bugger...
I've got my slippers on.
I'm going out in public, for a meal, and I've got my damn slippers on.
D'oh!
Veronica, as supportive as ever, does her best to not wet herself laughing and, fair play to her, she just about manages it although I'm going to be ribbed about it for the foreseeable future.
The food was typical bar food but the company was great. The weans trashed the place and ate next to nothing as they just wanted to go and play in the play area. I managed to squeeze in a Fat-Boy Mixed grill... even after the huge Chinese meal last night. I need to lose weight before transplant, not pile it on! It's just so good having taste buds again though!
Well it's off to see my oncologist tomorrow morning for the full results of the CT Scan. Even though I know they are going to be OK I'm still a bit nervous about it... ever the pessimist!
Wish us luck!
Today we arranged to treat some good friends and their kiddies for lunch. Claire and Steve have been so supportive over this last year and have dropped everything on a good number of occasions now when I have had to rush into hospital and things of that nature. When you think that they have two kiddies the same age as ours it can't have been easy on them. Anyway, this was just our little token way of saying "Thanks"... we'll try and get them out for an evening meal without the children soon.
So we set out to meet them at the restaurant (well, pub with children's play area) only to discover when we got there that it is closed for renovations... not a good start. 5 minutes of humming and ha-ing and we choose the next decent pub lunch place and set off.
I'm thinking to myself that the kiddie mobile is running really well after its recent service and that my mechanic has really done a good job. The pedals feel soft and responsive and I have a quick look down at them. I look back to the road and then look back down again.
Bugger...
I've got my slippers on.
I'm going out in public, for a meal, and I've got my damn slippers on.
D'oh!
Veronica, as supportive as ever, does her best to not wet herself laughing and, fair play to her, she just about manages it although I'm going to be ribbed about it for the foreseeable future.
The food was typical bar food but the company was great. The weans trashed the place and ate next to nothing as they just wanted to go and play in the play area. I managed to squeeze in a Fat-Boy Mixed grill... even after the huge Chinese meal last night. I need to lose weight before transplant, not pile it on! It's just so good having taste buds again though!
Well it's off to see my oncologist tomorrow morning for the full results of the CT Scan. Even though I know they are going to be OK I'm still a bit nervous about it... ever the pessimist!
Wish us luck!
Saturday, May 26, 2007
A nice family day out
We took the girls out to a localish park a few miles away from the house today to let them burn off some energy. Veronica and I were getting a bit of the the cabin fever feelings so we needed wide open space and kiddie entertainment. The Kings Park in Stirling was perfect. The weans had a total blast and we just enjoyed them enjoying themselves. It's been a while since we've been out as a family like that as I've always been too knackered so it was really cool... although my bum is a bit sore from the roundabout thingy in the picture above. In order to pedal I had to sit back off the seat (it is a wean ride after all) and position the bar carefully between my cheeks. Being a man with a couple of pounds of spare fat on his behind you'd have thought it would be comfortable enough but no. It knacked!
So after the park we went for a nice lunch and then headed back home. The girls played outside with friends and then they finally had a bath and went to bed. Veronica and I then had a lovely Chinese takeaway to finish the day off and, as usual, we both over ate and just beached up on the sofas like a couple of whales for the rest of the night.
Now having read Kelly's recent blog entry at Chemopalooza I've decided I need to talk Veronica into a trip to Boston once all this is over. I'm sure someone will have Erin and Rebecca for a long weekend. I really want to do a DUCK tour!! I'll then need to visit tacky Kitty O'Sheas and then, if time, nip down to The Beachcomber in Quincy and catch Black 47 playing live. I'd also love to watch a Celtics game or failing that a Patriots game. I don't "get" baseball so I'm not to arsed about watching the Red Sox but I could probably go a Bruins game if I was guaranteed a good punch up!
We took the girls out to a localish park a few miles away from the house today to let them burn off some energy. Veronica and I were getting a bit of the the cabin fever feelings so we needed wide open space and kiddie entertainment. The Kings Park in Stirling was perfect. The weans had a total blast and we just enjoyed them enjoying themselves. It's been a while since we've been out as a family like that as I've always been too knackered so it was really cool... although my bum is a bit sore from the roundabout thingy in the picture above. In order to pedal I had to sit back off the seat (it is a wean ride after all) and position the bar carefully between my cheeks. Being a man with a couple of pounds of spare fat on his behind you'd have thought it would be comfortable enough but no. It knacked!
So after the park we went for a nice lunch and then headed back home. The girls played outside with friends and then they finally had a bath and went to bed. Veronica and I then had a lovely Chinese takeaway to finish the day off and, as usual, we both over ate and just beached up on the sofas like a couple of whales for the rest of the night.
Now having read Kelly's recent blog entry at Chemopalooza I've decided I need to talk Veronica into a trip to Boston once all this is over. I'm sure someone will have Erin and Rebecca for a long weekend. I really want to do a DUCK tour!! I'll then need to visit tacky Kitty O'Sheas and then, if time, nip down to The Beachcomber in Quincy and catch Black 47 playing live. I'd also love to watch a Celtics game or failing that a Patriots game. I don't "get" baseball so I'm not to arsed about watching the Red Sox but I could probably go a Bruins game if I was guaranteed a good punch up!
Friday, May 25, 2007
The preliminary scan results are in...
and they're gooooooood!
I called my haematology nurse today to see if I actually had an appointment to get my results on Monday as my onc is a bit forgetful. True to form he hadn't made me one but the nurse said there is no way the CT results will be back by then. I was advised to call in on Monday morning and if they did happen to be ready then I could come in to discuss them. On a whim she decided to check my records and the results were there. She wasn't going to volunteer what was in the report so I asked up front for a sneak preview.
"Well, bearing in mind the consultant hasn't looked at it yet I can tell you that it is good news and the mass in the chest has shrunk back. I can't give you sizes and figures as your full notes aren't here but it HAS SHRUNK BACK".
Woo Hoo!
(In case you don't understand the picture; I play the part of Paul McStay and the Huns play the part of the Hodge... beaten again!)
That's two bits of good news I've had in one day. I was in MACTU getting my weekly line clean and I was told there that I am infection clear and all my blood cultures taken on Wednesday were negative and all clear.
I can't take all this good news. It's unusual for us. It must be all the positive vibes and prayers coming from everywhere and everyone
In other news of the good variety we have now topped the £1000 / $2000 mark for the sponsored walk. How chuffed are we!
Thursday, May 24, 2007
Visiting my new "home"
On a wee bit of a downer today.
Partly due to nerves waiting for the CT results and partly due to the visit Veronica and I had through at the Glasgow SCT unit this afternoon. We got to have a look around where I would be staying for 4 to 6 weeks and I guess it finally hit home that this procedure is happening. I'm well aware that I can say "no" but it is not an option when you so want to live as much as I do. The doctor was really upbeat and positive and the care fairy we met was lovely so I have absolutely no problems with the level of care I'll recieve. Who knows, I could be one of the people that sail through the procedure with no major problems, but the thought of leaving Veronica and the girls for so long tears me apart inside... they'll change so much in that time... especially my little bear, Rebecca. God, I'll miss them.
But hey. What's 4 - 6 weeks when the procedure will give me years and years.
Oh, and thanks to everyone for their thoughts, prayers and positive vibes. I really appreciate it.
On a wee bit of a downer today.
Partly due to nerves waiting for the CT results and partly due to the visit Veronica and I had through at the Glasgow SCT unit this afternoon. We got to have a look around where I would be staying for 4 to 6 weeks and I guess it finally hit home that this procedure is happening. I'm well aware that I can say "no" but it is not an option when you so want to live as much as I do. The doctor was really upbeat and positive and the care fairy we met was lovely so I have absolutely no problems with the level of care I'll recieve. Who knows, I could be one of the people that sail through the procedure with no major problems, but the thought of leaving Veronica and the girls for so long tears me apart inside... they'll change so much in that time... especially my little bear, Rebecca. God, I'll miss them.
But hey. What's 4 - 6 weeks when the procedure will give me years and years.
Oh, and thanks to everyone for their thoughts, prayers and positive vibes. I really appreciate it.
Wednesday, May 23, 2007
Now we wait!
The CT scan went smoothly as usual but the gunk they make you drink still makes me want to baulk! Let's just say I had a rather unpleasant experience with Pernod when I was in Benidorm with "the lads" when I was 18. I haven't touched the stuff since but this liquid they make you drink for the CT scan tastes identical. Urrrrgh! It's hard for me to keep it down. The CT technician promised she'd do her best to give me good scans so now I just wait... and I am not a good waiter!
I went into work in Edinburgh after the scan to find that they had raised an amazing £410 ($800) for Erin and Rebecca's sponsored walk! Man, was I taken aback with that. I was speechless when I was told. I can't thank everyone enough for all they have contributed to this excellent cause. The Lymphoma Association will really appreciate it! Thank-you!
After much hand-shaking and cuddles from people I hadn't seen for a few months I managed to escape the work place with a fellow IT nerd and we went to the local snooker hall for a greasy fat burger and a couple of frames. Word of warning... it can be tricky to play snooker with a Hickman line dangling from your chest. I lost count of the times I thought I was going to pull it out by playing a shot that had me right down on the table. However, it just felt so damn good to be doing normal things again that I completely 100% forgot about the Hodge for a period and it was gooooood.
Oh... and I won the snooker match as well. Nae luck, Stevie-boy!
The CT scan went smoothly as usual but the gunk they make you drink still makes me want to baulk! Let's just say I had a rather unpleasant experience with Pernod when I was in Benidorm with "the lads" when I was 18. I haven't touched the stuff since but this liquid they make you drink for the CT scan tastes identical. Urrrrgh! It's hard for me to keep it down. The CT technician promised she'd do her best to give me good scans so now I just wait... and I am not a good waiter!
I went into work in Edinburgh after the scan to find that they had raised an amazing £410 ($800) for Erin and Rebecca's sponsored walk! Man, was I taken aback with that. I was speechless when I was told. I can't thank everyone enough for all they have contributed to this excellent cause. The Lymphoma Association will really appreciate it! Thank-you!
After much hand-shaking and cuddles from people I hadn't seen for a few months I managed to escape the work place with a fellow IT nerd and we went to the local snooker hall for a greasy fat burger and a couple of frames. Word of warning... it can be tricky to play snooker with a Hickman line dangling from your chest. I lost count of the times I thought I was going to pull it out by playing a shot that had me right down on the table. However, it just felt so damn good to be doing normal things again that I completely 100% forgot about the Hodge for a period and it was gooooood.
Oh... and I won the snooker match as well. Nae luck, Stevie-boy!
Tuesday, May 22, 2007
Lungs A-OK.
Got to the hospital nice and early today only to spend 20 minutes looking for a parking space. It was bedlam there today. I've never seen a hospital so busy.
Anyway the lung tests were straight forward enough... just breathing into a big machine and carrying out three different procedures. A lung volume test, a "speed" test (how quickly I can exhale the air in my lungs) and a gas mixture test. Mine are all with "normal ranges" so the tester reckons that, as far as the old lungs go, I'm fit enough for transpGlant. I still intend to work on getting them stronger though as it can't hurt, can it?
From the respiratory lab I went along to get my antibiotics. I also got some blood work results back from yesterday that showed my haemoglobin was still lower than normal (97) but on the up so I had to be happy with that. At around 1230 I was ready to go and just walking out of the ward when the care fairy called me back. There was a PS in my notes that said my oncologist wanted to see me after my final antibiotic dose. She phoned him up and he said he would be there by 1500! Oh, well. Another day wasted as there was no way in hell I was leaving the hospital in the car and having to come back to fight for a space.
1500 arrived and the onc appeared. Asked if I was OK, checked my blood results and said "All is fine; see you later."!
A 2 and a half hour wait for a 40 second consultation. Pah.
Better safe than sorry, I suppose, but it meant I didn't have time to cook my gorgeous Irish stew for dinner as I need a good 4 hours to do it. I'll do it on Sunday.
Monday, May 21, 2007
Stealing the famous words of my man Peter Griffin ( on the left) I'm still feeling "pretty frickin' sweet."
Another productive day and not feeling too tired. I'd say I was about 75 - 80 percent normal but it's hard to gauge as I can't really remember what feeling normal is like... it's been that long.
Was at the hospital for my antibiotics and the care fairies thought I looked a bit peaky and might need more blood so they took a full blood count. I haven't had a call back so I guess everything checked out and it was just my post-chemo "washed out look" and nothing to worry about.
Had a wander around Stirling town centre and picked up a few books to keep me going. Setup the webcam to my folks on the new computer (which looks damn good on my huge LCD TV), cooked dinner and now I'm doing nowt for the rest of the night except having a bath and drinking root beer. Hey, at least it has beer in its name!
Tomorrow is my checks on my lung capacity. This could be interesting seeing as I've just finished chemo, have a line infection and have done zero exercise for a good while now. I think I'll ask for a re-check in 3 weeks time once I've built up some more strength. I think it would give an interesting comparison.
Sunday, May 20, 2007
What a difference a day makes
Well. Things have certainly changed for the better today. For one thing I haven't had a nap... although I didn't get up until 1030! Having said that I can't honestly remember the last time I stayed awake for more than 12 hours.
I went to the hospital as planned for my antibiotics at 1200 and then did the family weekly shopping on my way back home. It's good when I do the shopping as I can slip in some Ben and Jerrys without getting nagged. I even managed to setup the new computer we bought for the girls that's been sitting around in the cupboard for a week. I'm feeling pretty damn pleased with myself and I have regained the confidence I need that I will be physically strong enough for the SCT procedure.
It is a great weight lifted off my shoulders. Now I just need to get hold of an exercise bike to build up my lung capacity.
Well. Things have certainly changed for the better today. For one thing I haven't had a nap... although I didn't get up until 1030! Having said that I can't honestly remember the last time I stayed awake for more than 12 hours.
I went to the hospital as planned for my antibiotics at 1200 and then did the family weekly shopping on my way back home. It's good when I do the shopping as I can slip in some Ben and Jerrys without getting nagged. I even managed to setup the new computer we bought for the girls that's been sitting around in the cupboard for a week. I'm feeling pretty damn pleased with myself and I have regained the confidence I need that I will be physically strong enough for the SCT procedure.
It is a great weight lifted off my shoulders. Now I just need to get hold of an exercise bike to build up my lung capacity.
Saturday, May 19, 2007
Two steps forward and one step back
That's me back from another two night visit with my favourite nurses in hospital. It's pretty funny how a day pans out.
I got up early (for me!) on Thursday morning as I had the 0810 appointment with the cardiologist for my pre-transplant test. I'd bought a gift and a thank-you card for the nursing staff who took care of me during the DHAP chemo and thought I would pop it in whilst I was there. So I get to the hospital at 0800 and hand in the pressie and pretty much left it at "I hope to never see any of you again in a professional capacity!" They wished me all the best, made me promise to let them know how the transplant went and off I went for the heart test. That was just an ultrasound and my heart is "strong as an ox".
I get home and have a nap but notice I've got a low level headache on the go. I rest up for most of the day, have a bath and then around 1800 I feel pretty warm and the headache is still there. Then the fatal words from Veronica... "I think you should maybe take your temperature". I do and it is at 38.5C (101.3F).
Poo. Anything over 38C (100.4F) has to be phoned in. I phone in and am ordered back to the hospital and back to my favourite ward. The irony of it all was not lost on either myself or the nursing staff. We had a laugh about it anyway.
Long story short. Antibiotics administered straight away, chest x-ray, every test know to man and blood cultures taken. These showed (after 30hours growth) that I had another bloody line infection so now we're trying to save the Hickman line for transplant. However, if there is any hint of any infection before transplant, it is being whipped out and a new one placed in the other side of my chest.
My haemoglobin was low again so I had another 2 units of blood and I was 0.5 on the neurophiles scale... not quite neutropenic but showed that I was at the lowest point (blood-wise) of my chemo cycle and explained why I was getting tired again.
Only one "exciting" thing happened during my stay this time but it was enough to keep me awake panicking all night. I was examined by a junior doctor and then again by the SHO (senior house officer). Remember these dudes are not haematologists or oncologists. They are "catch all doctors" pretty much still learning their trade. I asked the SHO what he thought was going on and he said, without any hesitation, "I think your bone marrow is failing" and walked out the room.
Talk about tactless!! I couldn't speak to my onc until the next day and he said that that was "a load of crap" but the damage had been done... a nights sleep had been lost and I was worried sick!
So it's another week of hospital visits ahead for antibiotics and if I couple that up with a lung test, CT scan and a visit to Glasgow to the transplant department it means neither Veronica or I are in for much of a rest.
We really need to catch a break.
As a side note... A big big thank-you to the anonymous poster for their comments to my last post. It's really helped me alot and I really appreciate it. Thank-you.
Kelly, thanks for the positives. I think they reached me in Scotland at 0500 when I finally calmed down and fell asleep!
Cath, I'm certainly not inspiring! A pain in the arse, maybe, but no inspiration. Ask the missus!! I really appreciate the help and support you have given to us through baby-sitting etc... you too May. Thank-you and when are you coming to take that cushion away?
I also got my root beer! Found an online supplier in the UK and got a crate delivered next day along with a crate of proper cream soda. I'm going to be burping all week.
That's me back from another two night visit with my favourite nurses in hospital. It's pretty funny how a day pans out.
I got up early (for me!) on Thursday morning as I had the 0810 appointment with the cardiologist for my pre-transplant test. I'd bought a gift and a thank-you card for the nursing staff who took care of me during the DHAP chemo and thought I would pop it in whilst I was there. So I get to the hospital at 0800 and hand in the pressie and pretty much left it at "I hope to never see any of you again in a professional capacity!" They wished me all the best, made me promise to let them know how the transplant went and off I went for the heart test. That was just an ultrasound and my heart is "strong as an ox".
I get home and have a nap but notice I've got a low level headache on the go. I rest up for most of the day, have a bath and then around 1800 I feel pretty warm and the headache is still there. Then the fatal words from Veronica... "I think you should maybe take your temperature". I do and it is at 38.5C (101.3F).
Poo. Anything over 38C (100.4F) has to be phoned in. I phone in and am ordered back to the hospital and back to my favourite ward. The irony of it all was not lost on either myself or the nursing staff. We had a laugh about it anyway.
Long story short. Antibiotics administered straight away, chest x-ray, every test know to man and blood cultures taken. These showed (after 30hours growth) that I had another bloody line infection so now we're trying to save the Hickman line for transplant. However, if there is any hint of any infection before transplant, it is being whipped out and a new one placed in the other side of my chest.
My haemoglobin was low again so I had another 2 units of blood and I was 0.5 on the neurophiles scale... not quite neutropenic but showed that I was at the lowest point (blood-wise) of my chemo cycle and explained why I was getting tired again.
Only one "exciting" thing happened during my stay this time but it was enough to keep me awake panicking all night. I was examined by a junior doctor and then again by the SHO (senior house officer). Remember these dudes are not haematologists or oncologists. They are "catch all doctors" pretty much still learning their trade. I asked the SHO what he thought was going on and he said, without any hesitation, "I think your bone marrow is failing" and walked out the room.
Talk about tactless!! I couldn't speak to my onc until the next day and he said that that was "a load of crap" but the damage had been done... a nights sleep had been lost and I was worried sick!
So it's another week of hospital visits ahead for antibiotics and if I couple that up with a lung test, CT scan and a visit to Glasgow to the transplant department it means neither Veronica or I are in for much of a rest.
We really need to catch a break.
As a side note... A big big thank-you to the anonymous poster for their comments to my last post. It's really helped me alot and I really appreciate it. Thank-you.
Kelly, thanks for the positives. I think they reached me in Scotland at 0500 when I finally calmed down and fell asleep!
Cath, I'm certainly not inspiring! A pain in the arse, maybe, but no inspiration. Ask the missus!! I really appreciate the help and support you have given to us through baby-sitting etc... you too May. Thank-you and when are you coming to take that cushion away?
I also got my root beer! Found an online supplier in the UK and got a crate delivered next day along with a crate of proper cream soda. I'm going to be burping all week.
Wednesday, May 16, 2007
Pretty uneventful, these last few days.
Got in the car for the first time in what must be 2 months and took a drive out to PC World to get a cable for the new computer we've bought for Erin. 30mins each way and I managed to buy the wrong damn thing... bit embarrassing really, seeing as I work in IT! I just could not find the energy to drive back and change it so I nipped onto ebay and bought one there at a third of the price of rip-off-World.
I now have my pre-transplant cardiology tests tomorrow. The hospital 'phoned this afternoon and Veronica took the call. They have a cancellation and could I make it in tomorrow at 0810! Veronica agreed to it on my behalf but unfortunately didn't ask what the tests are so I have no idea how long I'll be in or what they will do to me. I've tried to Google for info but can't really find any.
Generally I'm feeling OK but pretty low, if I'm honest. I know I shouldn't get frustrated at my lack of energy and I am definitely getting stronger everyday but every time I need to go for an afternoon kip I feel I am wasting time that I should be spending with the girls before transplant. I think I may have to take Veronica's advice and see a councillor. I don't want to end up getting a depression on top of everything else and maybe offloading to someone "not involved" is the way forward. I'll mull it over for a day or two.
I wish I could be a bit more upbeat like Kelly Kane over at Chemopalooza. Her blog is real fun and uplifting... this one just seems to be turning into some sort of morbid rant! I don't recall feeling like this at all during my ABVD treatment so I guess this is all just because of the relapse and the fact that I am currently in between treatments, in between scans and still not totally 100% sure what lies ahead... I hate the feeling that The Hodge might still be there but nothing is being done to it for a few week allowing it to regroup for another attack.
Sorry for this entry. Maybe this is the way I should off-load as I feel better for it.
Doesn't make good reading though!
Got in the car for the first time in what must be 2 months and took a drive out to PC World to get a cable for the new computer we've bought for Erin. 30mins each way and I managed to buy the wrong damn thing... bit embarrassing really, seeing as I work in IT! I just could not find the energy to drive back and change it so I nipped onto ebay and bought one there at a third of the price of rip-off-World.
I now have my pre-transplant cardiology tests tomorrow. The hospital 'phoned this afternoon and Veronica took the call. They have a cancellation and could I make it in tomorrow at 0810! Veronica agreed to it on my behalf but unfortunately didn't ask what the tests are so I have no idea how long I'll be in or what they will do to me. I've tried to Google for info but can't really find any.
Generally I'm feeling OK but pretty low, if I'm honest. I know I shouldn't get frustrated at my lack of energy and I am definitely getting stronger everyday but every time I need to go for an afternoon kip I feel I am wasting time that I should be spending with the girls before transplant. I think I may have to take Veronica's advice and see a councillor. I don't want to end up getting a depression on top of everything else and maybe offloading to someone "not involved" is the way forward. I'll mull it over for a day or two.
I wish I could be a bit more upbeat like Kelly Kane over at Chemopalooza. Her blog is real fun and uplifting... this one just seems to be turning into some sort of morbid rant! I don't recall feeling like this at all during my ABVD treatment so I guess this is all just because of the relapse and the fact that I am currently in between treatments, in between scans and still not totally 100% sure what lies ahead... I hate the feeling that The Hodge might still be there but nothing is being done to it for a few week allowing it to regroup for another attack.
Sorry for this entry. Maybe this is the way I should off-load as I feel better for it.
Doesn't make good reading though!
Tuesday, May 15, 2007
Sunday, May 13, 2007
A very proud Daddy
We all finished! Even me!
Today was a very proud day for me and Veronica. Today our little girls, who are only 3 and a bit and 18 months remember, carried out a two-mile sponsored walk in aid of the Lymphoma Association... a charity based in the UK. Rebecca, the youngest, didn't quite manage the whole distance but she wasn't far of it... stubborn little monkey loves to walk and literally walks till she drops.
I'm not doing it again!
All in all we think we will have raised about £700 for the Association and I couldn't be prouder of the achievement of these two little angels.
From a personal point of view I was a little proud that even I managed to walk the distance. It just shows you what a couple of pints of fresh blood can do for your system! I haven't even been able to walk to the local shop these last few weeks so a two mile walk seemed a bit of an impossibility. The blood appears to have done the trick.
Onwards and upwards!
From a personal point of view I was a little proud that even I managed to walk the distance. It just shows you what a couple of pints of fresh blood can do for your system! I haven't even been able to walk to the local shop these last few weeks so a two mile walk seemed a bit of an impossibility. The blood appears to have done the trick.
Onwards and upwards!
Saturday, May 12, 2007
I arrived at the hospital for 9am sharp this morning. Unfortunately my blood wasn't as punctual! The blood people had definitely set 2 units aside for me but they couldn't remember quite what fridge they had placed it in over night. Finally, after a poor porter searching the entire hospital, it turned up in a fridge in one of the surgical units. Thank goodness for that as I really didn't want to go home "bloodless".
The rest of the day was pretty uneventful. Just lounged around whilst hooked up to the drip feeding me someone elses blood. Played Nintendo, read, eat some food... usual stuff. My caring fairies for the day were Claire and Gillian and, as usual, I was superbly looked after with tea and biccys offered every half an hour.
I got a bit of s shock half way through the transfusion. A girl who has going through ABVD at the same time and pace as me last year came into the unit so I got talking to her husband. Seems exactly the same thing that is happening to me is happening to her... she is just two weeks behind me!
She had 12 lots of ABVD (like me) and was given the all clear (like me) after PET.
No need for radio (like me.... hmmmmmmm)
3 months later the routine CT scan show growth. Unfortunately for this girl it also shows new growth.
Cancer back, line installed, DHAP, stem cell harvest and transplant. (like me)
Now I don't know exactly how many new cases of Hodgkins our shared oncologist gets each year but it can't be many. I'd say 4. He must be devastated that 2 have to go to transplant. This is not how this disease should be responding to treatment. Guess what? I blame the lack of radiotherapy. I've now read over 100 German case studies and trials on the importance of treating Hodgkins (especially early stage 1 and II disease) with combined chemo and radio therapy. Why the UK can't accept these findings and insists on carrying out needless clinical trials in an area that has extensively been covered by the Germans is beyond me. Is it purely to fleece R and D money from government or is it xenophobia and jingoism because it is "The Germans" who have carried out the research and the Brits can't be seen to be following a German lead.
Pisses me right off!!
Oh yeah. Notice the piccy in the top left corner? If you are able to donate blood then please do. You don't realise what an altruistic thing it is that you are doing but it really helps save lives and will help save mine.
I'm blood type "O RhD negative". Unfortunately (according to Google) only 6% of the UK carries this blood type and there are only 2300 units left in stock. If you have the same get your arse to a blood bank asap!!!
In fact get your arse to a blood bank anyway.
The rest of the day was pretty uneventful. Just lounged around whilst hooked up to the drip feeding me someone elses blood. Played Nintendo, read, eat some food... usual stuff. My caring fairies for the day were Claire and Gillian and, as usual, I was superbly looked after with tea and biccys offered every half an hour.
I got a bit of s shock half way through the transfusion. A girl who has going through ABVD at the same time and pace as me last year came into the unit so I got talking to her husband. Seems exactly the same thing that is happening to me is happening to her... she is just two weeks behind me!
She had 12 lots of ABVD (like me) and was given the all clear (like me) after PET.
No need for radio (like me.... hmmmmmmm)
3 months later the routine CT scan show growth. Unfortunately for this girl it also shows new growth.
Cancer back, line installed, DHAP, stem cell harvest and transplant. (like me)
Now I don't know exactly how many new cases of Hodgkins our shared oncologist gets each year but it can't be many. I'd say 4. He must be devastated that 2 have to go to transplant. This is not how this disease should be responding to treatment. Guess what? I blame the lack of radiotherapy. I've now read over 100 German case studies and trials on the importance of treating Hodgkins (especially early stage 1 and II disease) with combined chemo and radio therapy. Why the UK can't accept these findings and insists on carrying out needless clinical trials in an area that has extensively been covered by the Germans is beyond me. Is it purely to fleece R and D money from government or is it xenophobia and jingoism because it is "The Germans" who have carried out the research and the Brits can't be seen to be following a German lead.
Pisses me right off!!
Oh yeah. Notice the piccy in the top left corner? If you are able to donate blood then please do. You don't realise what an altruistic thing it is that you are doing but it really helps save lives and will help save mine.
I'm blood type "O RhD negative". Unfortunately (according to Google) only 6% of the UK carries this blood type and there are only 2300 units left in stock. If you have the same get your arse to a blood bank asap!!!
In fact get your arse to a blood bank anyway.
Friday, May 11, 2007
Thankfully the depression lifted yesterday and the last two days have been pretty OK. I'm still completely whacked out and feel like I've been hit by a bus and, after blood tests today, I know why.
Veronica and I went to a new unit for us in Falkirk today. The P.I.T.U. Progressive Intensive Treatment Unit. A grand title for somewhere I was going to just get my weekly line care and bloodwork carried out!
When we finally found the place after 20mins searching we waiting another 90 minutes for the blood results.
Basically, I'm totally anemic. My haemoglobin level is 7.1 when it should be between 12.5 and 18.0. This is common on DHAP and fully explains why I look like a ghost and have zero energy... i have no red blood cells! Ironically, my white blood count wasn't too bad!
All this means another visit to the hospital in Stirling tomorrow for a blood transfusion. I'll be getting 2 units of blood and the procedure takes about 3 hours per unit. That's another day written off but at least my lard arse will be in a chair all day! It'll be another "first" for me as so far I've escaped the clutches of the vampires at the blood transfusion service.
These last couple of months have certainly been "interesting".
Veronica and I went to a new unit for us in Falkirk today. The P.I.T.U. Progressive Intensive Treatment Unit. A grand title for somewhere I was going to just get my weekly line care and bloodwork carried out!
When we finally found the place after 20mins searching we waiting another 90 minutes for the blood results.
Basically, I'm totally anemic. My haemoglobin level is 7.1 when it should be between 12.5 and 18.0. This is common on DHAP and fully explains why I look like a ghost and have zero energy... i have no red blood cells! Ironically, my white blood count wasn't too bad!
All this means another visit to the hospital in Stirling tomorrow for a blood transfusion. I'll be getting 2 units of blood and the procedure takes about 3 hours per unit. That's another day written off but at least my lard arse will be in a chair all day! It'll be another "first" for me as so far I've escaped the clutches of the vampires at the blood transfusion service.
These last couple of months have certainly been "interesting".
Wednesday, May 09, 2007
And so the steroid drop-off starts and the come down begins. My brain enters the abyss of blackness again. Hopefully it will be a short visit.
I've always had a dislike for Wednesday. Furthest day from the weekend you've just had and furthest day to the next one. It's always been a bit of a bad day for me but today has been a cracker and below gives you a rough insight into one of Wullie's steroid come downs.
Today I have:-
1) started to put my financial affairs in order
2) listed things I want to say to the girls at various stages as they grow up. Fortunately I couldn't find the camcorder to commit them to DVD
3) Tried to think of some witty "last words"
4) Planned my funeral, including speeches and hymns, in intricate detail. Realised Glasgow Cathedral would be a bit big so settled for Dunblane instead. Celtic squad probably won't be able to make it. The Pope might also be busy that day.
5) Should I haunt Veronica if she meets someone else?
6) Will my girls remember me?
I've said it before and I'll say it again.
I can do chemo all day every day. My brain just can't do steroids.
But I know tomorrow will be a better, brighter day.
I've always had a dislike for Wednesday. Furthest day from the weekend you've just had and furthest day to the next one. It's always been a bit of a bad day for me but today has been a cracker and below gives you a rough insight into one of Wullie's steroid come downs.
Today I have:-
1) started to put my financial affairs in order
2) listed things I want to say to the girls at various stages as they grow up. Fortunately I couldn't find the camcorder to commit them to DVD
3) Tried to think of some witty "last words"
4) Planned my funeral, including speeches and hymns, in intricate detail. Realised Glasgow Cathedral would be a bit big so settled for Dunblane instead. Celtic squad probably won't be able to make it. The Pope might also be busy that day.
5) Should I haunt Veronica if she meets someone else?
6) Will my girls remember me?
I've said it before and I'll say it again.
I can do chemo all day every day. My brain just can't do steroids.
But I know tomorrow will be a better, brighter day.
Tuesday, May 08, 2007
I hope that you haven't been refreshing your web page looking for some sort of update because, unbelievably for me in recent weeks, absolutely bugger all is happening and it's great!
I feel fine. Just the usual tiredness and the complete lack of any taste-buds whatsoever. It is the weirdest side effect I have ever had and is a surreal experience I hope to never have again.
Yesterday, for lunch, I made a Ravioli, mixed with a Minestrone Cup-a-Soup, chucked in a few pickled onions and some extra hot peri-peri sauce and tasted.... nothing! Now this is not a combination of food that I would normally mix together but I just had to taste something! Once that failed I knew it was pointless trying anything else.... even a Chicken Phaal from the Indian wouldn't cut it as I'd had a South Indian Chilli Garlic Chicken curry a couple of days before and that tasted like a big fat zero as well! So, if anyone in the IT Department at work is going to Lier anytime soon can they bring me back one of those kebabs please? I can still taste that baby if I think about it!!
The only relief from the mouth is lollies. Lots and lots and lots of ice-lollies. Food of the Gods. If you are ever on chemo make sure your freezer is stocked with lollies.
I feel fine. Just the usual tiredness and the complete lack of any taste-buds whatsoever. It is the weirdest side effect I have ever had and is a surreal experience I hope to never have again.
Yesterday, for lunch, I made a Ravioli, mixed with a Minestrone Cup-a-Soup, chucked in a few pickled onions and some extra hot peri-peri sauce and tasted.... nothing! Now this is not a combination of food that I would normally mix together but I just had to taste something! Once that failed I knew it was pointless trying anything else.... even a Chicken Phaal from the Indian wouldn't cut it as I'd had a South Indian Chilli Garlic Chicken curry a couple of days before and that tasted like a big fat zero as well! So, if anyone in the IT Department at work is going to Lier anytime soon can they bring me back one of those kebabs please? I can still taste that baby if I think about it!!
The only relief from the mouth is lollies. Lots and lots and lots of ice-lollies. Food of the Gods. If you are ever on chemo make sure your freezer is stocked with lollies.
Saturday, May 05, 2007
Another mountain climbed. Another hurdle negotiated. Another milestone reached. Blah blah blah!
We've made it through the third and final cycle of DHAP chemotherapy and I now have a break from being poisoned for a good month. Alleluia!
I went into hospital on Tuesday full of anxiety due to the messy nature of the last time but I needn't have worried. Apart from the fact that the lab managed to lose my 24 hour kidney urine sample (please explain to me how you can lose a whole GALLON of wee wee) and thus delaying chemo for a for a couple of hours whilst they could the kidney results via bloodwork it was smooth going. There was a slight concern with some blood levels... my haemoglobin and magnesium levels where a bit low but they managed to stay high enough for me to avoid the hassle of a blood transfusion so I was really pleased about that.
No sleep again in the hospital but that's ok. I'm home now and can hopefully catch up over the next few days. Veronica and I are both pretty beat up and tired but delighted that we have gotten over these last couple of months relatively easily. Looking back you realise just how much worse it could have been. Don't get me wrong now.... it has been really tough but at the end of the day I am still here and fighting and that is all I can ask for.
As far as I am concerned I now have only one procedure left to go and that will be it. The date for the Stem Cell Transplant came through today. I get admitted to Glasgow Royal on 19th June 2007 and my final seven sessions of chemo EVER will start on the 20th. If all goes well my stem cells will be re-introduced and I will be "re-born" on the 28th June 2007. I'll then have three to four more weeks in hospital whilst my immune system regrows.
Oh.
I'll be cured after all that as well!!!!
I'm sure of it.
We've made it through the third and final cycle of DHAP chemotherapy and I now have a break from being poisoned for a good month. Alleluia!
I went into hospital on Tuesday full of anxiety due to the messy nature of the last time but I needn't have worried. Apart from the fact that the lab managed to lose my 24 hour kidney urine sample (please explain to me how you can lose a whole GALLON of wee wee) and thus delaying chemo for a for a couple of hours whilst they could the kidney results via bloodwork it was smooth going. There was a slight concern with some blood levels... my haemoglobin and magnesium levels where a bit low but they managed to stay high enough for me to avoid the hassle of a blood transfusion so I was really pleased about that.
No sleep again in the hospital but that's ok. I'm home now and can hopefully catch up over the next few days. Veronica and I are both pretty beat up and tired but delighted that we have gotten over these last couple of months relatively easily. Looking back you realise just how much worse it could have been. Don't get me wrong now.... it has been really tough but at the end of the day I am still here and fighting and that is all I can ask for.
As far as I am concerned I now have only one procedure left to go and that will be it. The date for the Stem Cell Transplant came through today. I get admitted to Glasgow Royal on 19th June 2007 and my final seven sessions of chemo EVER will start on the 20th. If all goes well my stem cells will be re-introduced and I will be "re-born" on the 28th June 2007. I'll then have three to four more weeks in hospital whilst my immune system regrows.
Oh.
I'll be cured after all that as well!!!!
I'm sure of it.
Subscribe to:
Posts (Atom)