Woke up today feeling a little bit sick again. Was it the dodgy BBQ or the beer? In fact I felt a bit that way yesterday when I went to bed last night. I wasn't actually sick, but I had the feeling that the medication is probably holding it back. But the problem is that I didn't get any more Domperidone with my drugs on Friday - I only have enough left for today. So, if I do feel sick tomorrow, I only have Ondansetron.
So I phoned the emergency number. They said they would arrange for me to pick up a prescription at the hospital, they promised to phone me back. I then have to find a pharmacy that's open - probably not a problem if I can get it before 4.00pm. I didn't hear anything before 2.00pm - getting a bit tight so I phoned they ward. They didn't have it but were expecting it, they also said they would have the drugs not a prescription, so not such a worry if I can get it today.
Didn't worry too much all day about it. I was mainly hanging around the house, a little bit of gardening. Didn't have a lot of energy. But I made sure I got out to pick Christopher up from cub-camp. He was full of it, very excited, loved the whole thing. He had a lot to say about it. He seemed to really have built up friendships with the other cubs, something he didn't seem to have picked up on before.
I waited until after dinner before phoning back the hospital. Some confusion here, it seems the doctor had just expected me to turn up and the ward would give me some drugs from their own stock. So I just went back in and picked them up - all sorted. I think I'm covered for tomorrow.
Sunday, 31 May 2009
Saturday, 30 May 2009
Post chemo day
As has happened after the previous days I didn't get a lot of sleep last night. But I managed okay this morning. I did feel slightly sick today for the first time, but it was only a feeling and it went away by late morning. My left hand where the canular went in yesterday is a bit swollen and reddish, but not painful. This may be because the saline ran out before the end of the last of the chemo so it was going in a bit more concentrated and might have caused more irritation.
We managed a good day out today at Moors Valley Park on the Ringwood side of the New Forest. We took a picnic and went round some great play areas spread through the woods that Matthew enjoyed greatly. We also took a picnic and went on the steam railway. Lovely weather, great relaxation.
We had a BBQ this evening (meat thoroughly cooked) and Sam even let me have 2 beers!
We managed a good day out today at Moors Valley Park on the Ringwood side of the New Forest. We took a picnic and went round some great play areas spread through the woods that Matthew enjoyed greatly. We also took a picnic and went on the steam railway. Lovely weather, great relaxation.
We had a BBQ this evening (meat thoroughly cooked) and Sam even let me have 2 beers!
Friday, 29 May 2009
Third Chemo session
Strictly speaking today was not a black bin day. The bank holiday means that the bins get collected tomorrow. But the hospital didn't take account of that so I had to get my treatment anyway.
Well it's half-term at the moment. Christopher is off at cub camp at the moment (he went off yesterday). But Matthew is at home. So I agreed with Sam that I should go in on my own today.
Got in early enough this morning to see the doctor. The waiting room was a lot busier than last time when I arrived. I thought it was going to be quick for my weigh in, but I waited 20 mins to just before my doctor's appointment time. In and out quickly 76.9kg today - clearly I got properly fed by Brenda last weekend.
After that I found that Dr Davies is on holiday today, I'm seeing Professor Johnson today instead. Had to wait a bit to see him, about half hour. He was very friendly, it was mainly a cosy chat. He checked on how I was feeling - checked my lumps. He made light a bit about my condition like I'm not really ill, the chemo is a fairly mild dose and it's not surprising I don't feel sick. I'm quite happy with this, as you will know, as I don't see myself as ill. I also asked the cheese question, he confirmed that it really is about un-pasteurised milk and not to worry about Parmesan. He said that the biggest danger to me at this time of year is BBQ food. I also mentioned about indigestion last week, he was okay that I took some tablets which Sam was a bit dubious about.
Went back to hospital this afternoon for the treatment. A bit of a delay (20 mins) before they were ready. It seems that all the chairs were full today, last time there were a few empty. I conjectured with the nurse (Dhina today) that it was because of the bank holiday (5 days treatment in 4days). She seemed to think they had more patients generally and might have to start seesions on Saturdays. But otherwise the treatment went quite well I didn't feel bad at all. It's all a bit routine.
Had some confusion on my prescription. I was expecting more anti-gout but it wasn't included. Tried to get the doctor to confirm but he didn't get a message through. Finally the pharmacist said that it's only normally given on the first chemo cycle. Fine by me, that's 4 drugs I need to take at home now.
After getting home I was still pretty bright and breezy. I did some gardening to chop back some wild bushes in the garden. We are currently having a gardener chop out a lot of the plants and bushed so that we can turf it over. But he only comes sporadically and the whole lot is getting pretty wild.
Best of all today is that I decided to get away from the hair falling out and I'm going to get it shaved off completely. I also decided to get everybody at work to sponsor me. I thought I might get £50-£100 at £1 each. I was very worried about sending an email to the whole site, I just popped it off before I went to hospital. Most of them don't know me, or even about my disease - they all do now. When I got back from the hospital I was even more nervous about the response - almost expecting silence. But it was amazing, about 30 replies and £140 pledged. I think I can drum up some more support and get to £250 next week. I also found out that NXP will match whatever I raise, so it could be £500. I have chosen to support the campaign from the local radio station to build a music room in the teenage cancer centre at Southampton Hospital:
http://www.wave105.com/Article.asp?id=1309536
If you want to contribute too you I have now created a justgiving page:
http://www.justgiving.com/johnleary_headshave
This will allow me to keep track of anything you give. I previously said to use the one from wave105, but I now found that I can do it myself.
Well it's half-term at the moment. Christopher is off at cub camp at the moment (he went off yesterday). But Matthew is at home. So I agreed with Sam that I should go in on my own today.
Got in early enough this morning to see the doctor. The waiting room was a lot busier than last time when I arrived. I thought it was going to be quick for my weigh in, but I waited 20 mins to just before my doctor's appointment time. In and out quickly 76.9kg today - clearly I got properly fed by Brenda last weekend.
After that I found that Dr Davies is on holiday today, I'm seeing Professor Johnson today instead. Had to wait a bit to see him, about half hour. He was very friendly, it was mainly a cosy chat. He checked on how I was feeling - checked my lumps. He made light a bit about my condition like I'm not really ill, the chemo is a fairly mild dose and it's not surprising I don't feel sick. I'm quite happy with this, as you will know, as I don't see myself as ill. I also asked the cheese question, he confirmed that it really is about un-pasteurised milk and not to worry about Parmesan. He said that the biggest danger to me at this time of year is BBQ food. I also mentioned about indigestion last week, he was okay that I took some tablets which Sam was a bit dubious about.
Went back to hospital this afternoon for the treatment. A bit of a delay (20 mins) before they were ready. It seems that all the chairs were full today, last time there were a few empty. I conjectured with the nurse (Dhina today) that it was because of the bank holiday (5 days treatment in 4days). She seemed to think they had more patients generally and might have to start seesions on Saturdays. But otherwise the treatment went quite well I didn't feel bad at all. It's all a bit routine.
Had some confusion on my prescription. I was expecting more anti-gout but it wasn't included. Tried to get the doctor to confirm but he didn't get a message through. Finally the pharmacist said that it's only normally given on the first chemo cycle. Fine by me, that's 4 drugs I need to take at home now.
After getting home I was still pretty bright and breezy. I did some gardening to chop back some wild bushes in the garden. We are currently having a gardener chop out a lot of the plants and bushed so that we can turf it over. But he only comes sporadically and the whole lot is getting pretty wild.
Best of all today is that I decided to get away from the hair falling out and I'm going to get it shaved off completely. I also decided to get everybody at work to sponsor me. I thought I might get £50-£100 at £1 each. I was very worried about sending an email to the whole site, I just popped it off before I went to hospital. Most of them don't know me, or even about my disease - they all do now. When I got back from the hospital I was even more nervous about the response - almost expecting silence. But it was amazing, about 30 replies and £140 pledged. I think I can drum up some more support and get to £250 next week. I also found out that NXP will match whatever I raise, so it could be £500. I have chosen to support the campaign from the local radio station to build a music room in the teenage cancer centre at Southampton Hospital:
http://www.wave105.com/Article.asp?id=1309536
If you want to contribute too you I have now created a justgiving page:
http://www.justgiving.com/johnleary_headshave
This will allow me to keep track of anything you give. I previously said to use the one from wave105, but I now found that I can do it myself.
A bit of detail about the Chemo
I thought I'd add a bit of detail about the chemotherapy itself from my experience. This is a bit more of a nuts and bolts post. You may want to skip it. I'll post a general day-to-day update later.
The drug combination I'm having is, as I mentioned before called ABVD, which are the initials of the 4 drugs. You can find out more by clicking the links:
ABVD : Cancer Research UK
A – Adriamycin (now called doxorubicin)
B – Bleomycin
V – Vinblastine
D – Dacarbazine
ABVD : Cancer Research UK
A – Adriamycin (now called doxorubicin)
B – Bleomycin
V – Vinblastine
D – Dacarbazine
I get to sit in a quite soft comfy chair during the whole time, but I can move around a bit if I want to. The stuff from the drip is hanging on a stand with wheels, so I can walk around. I could go to the toilet, after all they are putting quite a bit of liquid in - it has to come out again. But, so far, I've avoided that until after it's finished. The whole room is light and airy, there are 8 chairs for patients in the room, but not all in use at the same time. There are also some (less comfy) chairs for someone to sit with the patients. The room has some quite interesting lighting patterns on the walls, probably for soothing effects. Generally it is fairly quiet in the room.
To start off I put my hands in warm water for about 10 minutes to 
try and pump up the veins. The nurse then puts a cannula into a
suitable vein in my arm. A cannula is a small plastic tube that gets put in using a needle, the needle is removed, the end of the tube can then be attached to a drip or syringe to put in drugs or take out blood.
Once the cannula is in I get hooked up to a bag of saline (salt water) which helps to dilute some of the drugs. This just flows in (as do the other drugs from the drip) by natural flow (gravity, liquid pressure ...). There is a pump that is not used for me, but I noticed that other patients do have it running, I guess if they need a large dose.
The first one in is the Vinblastine. This is put up as a bag in parallel to the saline. The nurse hangs around as this goes in in case I start to feel a stinging. This could indicate a leakage into tissues, which they need to sort out quickly. Probably takes a 10 minutes to complete.
Next up I get Bleomycin. This is given via a syringe. This is a bit worrying really, as you expect the speed to be not limited like a normal syringe which has a narrow needle tip, but has a wider open tube. You get the feeling the nurse can force it in too fast. But, so far, it has been okay, they go slowly, and it is probably fairly restricted anyway.
Then it's Doxorubicin. This is also put in by syringe. This one is red in colour. For the first time going to the toilet after having this it comes out a bit red. But nothing to worry about.
The last one is the Dacarbazine. It is also put in via a drip. It needs to be handled carefully as it reacts to light so there is a opaque cover over the drip bag and a coloured tube that it flows down to the cannula. It will also make me senstive to the sun so I need to keep covered up and creamed up. It can be very irritating to the veins so they put it in very slowly with a big dilution of saline. This probably takes about an hour to go in.
Generally the feeling of the drugs going in is a cooling of my arm because mainly because the liquid is at room temperature instead of body temperature for the blood. It is particularly true for the Dacarbazine, maybe because it takes so long. The effect is alleviated somewhat by putting a heat blanket over my arm. But overall the adminstration is not painful.
Once the last drugs have gone in there is a short time of flushing through with saline. Then the real painful bit - taking off the plasters holding the cannula. Removing the tube itself is not painful. Of course all this is replaced by a plaster that I will have to remove myself a few hours later. Once this is done I'm free to go, there's no real check on how I am, but I suppose the nurses would keep an eye out for me fainting or something like that.
Thursday, 28 May 2009
The cheese question
Today should be a significant milestone. It is officially the last day of my first cycle of chemo. Each cycle is 28 days starting from the first dose of drugs and includes 2 doses plus the recovery time afterwards. So now I've only got 2 or possibly 3 cycles to go, starting tomorrow. But, looking another way, tomorrow will be 3rd of possibly 6 doses, making half of them. That said the experience so far is that it's not so much the actual session as the days after that are hard.
I forgot to mention at the weekend about the cheese question. The only dietary restriction I have been given so far is that I shouldn't eat soft cheese. I think this means cheese from un-pasteurised milk. I only realised in the last few weeks that Parmesan is made from un-pasteurised milk and it's pretty impossible to find pasteurised. You can't get any cheese harder than that and what can I put on my pasta? So the quandary at the weekend came when Brenda offered me the cheese plate with Parmesan and pasteurised soft cheese. I took advice from my trusted medical adviser (Dr Lynda) who expected the requirement would be to avoid un-pasturised cheese. So I ate the soft cheese. Mind you I did have pasta for dinner tonight.
I forgot to mention at the weekend about the cheese question. The only dietary restriction I have been given so far is that I shouldn't eat soft cheese. I think this means cheese from un-pasteurised milk. I only realised in the last few weeks that Parmesan is made from un-pasteurised milk and it's pretty impossible to find pasteurised. You can't get any cheese harder than that and what can I put on my pasta? So the quandary at the weekend came when Brenda offered me the cheese plate with Parmesan and pasteurised soft cheese. I took advice from my trusted medical adviser (Dr Lynda) who expected the requirement would be to avoid un-pasturised cheese. So I ate the soft cheese. Mind you I did have pasta for dinner tonight.
Monday, 25 May 2009
Weekend at Pozzoni Manor
Continued dropouts of hair all weekend. I reckon about 200 on the pillow in the morning. A big shake-out in the shower - about 1000. Then about 20 each time I rub my head - 10 times a day. That makes a total of 1400, call it 2000 total to include any other losses. The human head has about 100,000 hairs. So that makes about 50 days, or 7 weeks before it's all gone. I was rather hoping I might be leaving a bit more on Brenda's pillows, but not to be I think.
Otherwise we had a thoroughly enjoyable weekend. The first time seeing P&B, D&L since my diagnosis, so we had a bit of discussion about how things are progressing. Plenty of special medicine of course.
Managed to sleep very well. The boys were very keen to sleep in tents in the garden. Of course someone had to sleep with them. We couldn't make the sick person do it could we? So Sam was out there I kept snug and warm inside. My arm was still aching a bit, but didn't stop me sleeping.
Otherwise we had a thoroughly enjoyable weekend. The first time seeing P&B, D&L since my diagnosis, so we had a bit of discussion about how things are progressing. Plenty of special medicine of course.
Managed to sleep very well. The boys were very keen to sleep in tents in the garden. Of course someone had to sleep with them. We couldn't make the sick person do it could we? So Sam was out there I kept snug and warm inside. My arm was still aching a bit, but didn't stop me sleeping.
Friday, 22 May 2009
Hair today ...
Many thanks to Mary for your comments. This is great, you've picked up blogging no problem, easy isn't it? I also got your card which was much appreciated. Don't worry I intend to be back in Dooneen very soon.
Today I started badly, didn't sleep much at all, my aching arm kept me awake most of the night. But things did pick up quite well. Lunchtime drinks at the pub to celebrate Anna's birthday, I think I managed 3 units. Then we went up to the Pozzoni family seat this evening. Despite not arriving until after 10pm we still managed to polish off at least 2 bottles of wine. Must have managed another 3-4 units as my contribution. It's great when Sam isn't in control of my alcohol intake. I think I'll sleep well tonight.
Let's face it though, there's only one bit of news you've all been waiting for. Yes, it's true, the hair is starting to fall out. I can rub my hair and quite a lot of small pieces are falling it. It wasn't obvious at first, as they seem to be just like clippings, I was expecting to see the whole hair with the root coming out. On the other hand, there's still a lot to go, it's just starting to look a bit thin. No photos yet, let's see how it develops.
Today I started badly, didn't sleep much at all, my aching arm kept me awake most of the night. But things did pick up quite well. Lunchtime drinks at the pub to celebrate Anna's birthday, I think I managed 3 units. Then we went up to the Pozzoni family seat this evening. Despite not arriving until after 10pm we still managed to polish off at least 2 bottles of wine. Must have managed another 3-4 units as my contribution. It's great when Sam isn't in control of my alcohol intake. I think I'll sleep well tonight.
Let's face it though, there's only one bit of news you've all been waiting for. Yes, it's true, the hair is starting to fall out. I can rub my hair and quite a lot of small pieces are falling it. It wasn't obvious at first, as they seem to be just like clippings, I was expecting to see the whole hair with the root coming out. On the other hand, there's still a lot to go, it's just starting to look a bit thin. No photos yet, let's see how it develops.
Thursday, 21 May 2009
Is ths the meaning of XIO?
Thanks to Chris, who found the following reference to XIO:
XiO Radiation Treatment Planning Cooper Cancer Institute
Looks quite probable. Glad to see someone is paying attention.
As for me, I've got aching arms and legs today. Is it the treatment or the Zapcats? Still, I did cream up yesterday before going out. Graham and Andy came in to work today looking like tomatoes.
XiO Radiation Treatment Planning Cooper Cancer Institute
Looks quite probable. Glad to see someone is paying attention.
As for me, I've got aching arms and legs today. Is it the treatment or the Zapcats? Still, I did cream up yesterday before going out. Graham and Andy came in to work today looking like tomatoes.
Tuesday, 19 May 2009
Zapcatting today
This is not really about Hodgkins, but just to show things are "normal" I went on a team celebration Zapcatting today. This is basically about strapping a massive motor onto a small raft and seeing if you can keep it on the water:
ZapCat events Southampton
ZapCat events Southampton
This originally got cancelled 4 weeks ago. I didn't tell the doctor it was back on, so he didn't say I couldn't do it. Mainly it involved being thrown around at high speed in very sharp turns and flying over the wake of another boat to try and get airbourne. So, at the end of it, I have aching arms and legs from hanging on for dear life.
But it takes my mind off things. Should I tell the doctor?
Work again
Nothing too exciting to say I'm afraid. I did get back to work yesterday and today and managed without getting tired. I am getting hints of an aching arm again though - similar timing to 2 weeks ago.
I also went swimming after work today. I needed to get a bit more active since I moved down here anyway. I can't put it off because I'm ill. I managed about half an hour, I haven't really done a lot of serious swimming for a long time, so I need to take it easy. But it is quite good low impact exercise.
I also discussed with Mary (occupational health) about joining the gym at work. I'll have to see if I'm up to that.
I also went swimming after work today. I needed to get a bit more active since I moved down here anyway. I can't put it off because I'm ill. I managed about half an hour, I haven't really done a lot of serious swimming for a long time, so I need to take it easy. But it is quite good low impact exercise.
I also discussed with Mary (occupational health) about joining the gym at work. I'll have to see if I'm up to that.
Saturday, 16 May 2009
Chemo day +1
Well I didn't sleep much last night, same as after the last session. This time I didn't get to sleep until about 5:00am - I got up and read quite a bit. Of course Matthew came in at six, but Sam took him out and I did get a few hours sleep. I'm a bit tired now, but I have survived the day. I actually took a load of old furniture down to the tip today to clear out the garage.
The tingling in my tongue is more of a metallic taste which I had last time. It's listed as a side effect of Dacarbazine, so I don't think it is an allergy problem.
Still no hair loss yet I'm afraid. Maybe I should claim yesterday's haircut on expenses. Perhaps I should get some advice from my MP.
Overall I think I'm feeling better than last time.
The tingling in my tongue is more of a metallic taste which I had last time. It's listed as a side effect of Dacarbazine, so I don't think it is an allergy problem.
Still no hair loss yet I'm afraid. Maybe I should claim yesterday's haircut on expenses. Perhaps I should get some advice from my MP.
Overall I think I'm feeling better than last time.
Friday, 15 May 2009
Second Chemo session
Well a bit of a mixed up day today. quite a lot happening, but all went well.
We got to the hospital about 10 for 10:30 appointment. The waiting room was noticeably less crowded than before. Having booked in they gave me a list of chemo appointments that are now on Monday, except today's which is at 2:30. I didn't spot straightaway either that they were also at weekly intervals instead of fortnightly. On top of that they added some extra appointments marked as xio - not sure what these are. Need to check when I see Doctor Davies.
They checked my weight 75.5kg - a bit down on last time, although I have been eating properly. Probably not enough alcohol, I expect that to be rectified next weekend when we stay with the Pozzonis.
Got in to see Dr Davies promptly. Had a good chat about how I'd got on since last time. He hadn't been aware of the allergic reaction, but he did find the notes on the computer. He said it was rare to see that sort of reaction and typically in women under 30 (don't know what to make of that - I already know I'm too old to have this disease and now...). But he's now prescribed me some new anti-sickness - Dom Pérignon I think he said. Didn't think you could get that on presciption, but sounds good, must be a perk of bring a private patient. Otherwise he poked me around a bit and he couldn't find the lumps under my armpits. Very pleased with my progress.
We discussed the new appointments. He didn't know what xio was either, but certainly the weekly chemo was wrong. He explained that the Monday appointments were because they changed the system. Before everybody came in, had a blood test, saw the doctor, waited for blood results - then the chemo was made up by the pharmacy and then was given. The problem was that the pharmacy got a rush of orders and then the chemo suite was busy until quite late because people went in when the drugs were ready. The new system is that people see the doctor and have blood tests one day. They then come back next day for the chemo at a fixed appointment time. Clearly I can't come back on Monday as it doesn't fit with bin collection days. Monday is food waste collection day and it's the same every week - I wouldn't know what to do. So we agreed that I could continue with doing a blood test on Thursday, then see him and have chemo both on the Friday.
We decided to go back home after seeing Dr Davies. We could then get back for lunch. I also decided that my hair is getting too long waiting for it to fall out, so I went to the barbers. I went in C.Ford to "The Men's Room", not been there before. The hairdresser commented that it was already a bit short. I said I was doing chemo, she said she had just finished. More chat and it turns out she had Hodgkins as well! How amazing! Probably the only other case in C.Ford. She was also treated by Dr Davies at SGH. Needless to say we spent the whole time discussing our experiences. She is so excited to have finished treatment and to be clear of the disease, but just a bit worried about her first checkup on Monday.
Went back to the hospital. Picked up the new prescription. The Dom Pérignon comes in a blister pack of 12 white tablets. And it's called ahh... Domperidone. Must have misheard, I knew it was too good to be true.
Had the chemo. This was quite good. Felt better than last time. My arm wasn't quite so cold where it went in. It did seem to take a bit longer than before, at one point the nurse checked and it looks like to drip was running a bit slowly. She turned it up and it finished after about 2 hours. It was a bit late, 4:15, but we didn't have to worry about the boys, they had a film night after school tonight and are also being picked up anyway. I got the updated appointments during the chemo, now all on (black) Friday's, but I still have the xio appointments - the secretary doesn't know what they are either but I shouldn't need to go for them (anybody got any suggestions? please add comments). I drove home after the session myself - I was fine. So next time I can probably just take myself and leave Sam at home if she likes.
Getting home and having dinner I can feel my tongue is a bit tingly. I hope it's not another allergic reaction. Still, I think we're ready for it this time. I can also feel a bit of throbbing in my armpit - good sign that things are happening.
A bit of discussion with Sam later about why we haven't had much alcohol lately. She claims to have been advised by her mother-in-law. I pointed out that alcohol was actually encouraged by the medics as relaxation and placed no special restrictions. A later call with my mum confirmed she had, at least, advised moderation. Not sure I completely agree.
Apologies if you think today's is a bit long and lots of waffle today.
We got to the hospital about 10 for 10:30 appointment. The waiting room was noticeably less crowded than before. Having booked in they gave me a list of chemo appointments that are now on Monday, except today's which is at 2:30. I didn't spot straightaway either that they were also at weekly intervals instead of fortnightly. On top of that they added some extra appointments marked as xio - not sure what these are. Need to check when I see Doctor Davies.
They checked my weight 75.5kg - a bit down on last time, although I have been eating properly. Probably not enough alcohol, I expect that to be rectified next weekend when we stay with the Pozzonis.
Got in to see Dr Davies promptly. Had a good chat about how I'd got on since last time. He hadn't been aware of the allergic reaction, but he did find the notes on the computer. He said it was rare to see that sort of reaction and typically in women under 30 (don't know what to make of that - I already know I'm too old to have this disease and now...). But he's now prescribed me some new anti-sickness - Dom Pérignon I think he said. Didn't think you could get that on presciption, but sounds good, must be a perk of bring a private patient. Otherwise he poked me around a bit and he couldn't find the lumps under my armpits. Very pleased with my progress.
We discussed the new appointments. He didn't know what xio was either, but certainly the weekly chemo was wrong. He explained that the Monday appointments were because they changed the system. Before everybody came in, had a blood test, saw the doctor, waited for blood results - then the chemo was made up by the pharmacy and then was given. The problem was that the pharmacy got a rush of orders and then the chemo suite was busy until quite late because people went in when the drugs were ready. The new system is that people see the doctor and have blood tests one day. They then come back next day for the chemo at a fixed appointment time. Clearly I can't come back on Monday as it doesn't fit with bin collection days. Monday is food waste collection day and it's the same every week - I wouldn't know what to do. So we agreed that I could continue with doing a blood test on Thursday, then see him and have chemo both on the Friday.
We decided to go back home after seeing Dr Davies. We could then get back for lunch. I also decided that my hair is getting too long waiting for it to fall out, so I went to the barbers. I went in C.Ford to "The Men's Room", not been there before. The hairdresser commented that it was already a bit short. I said I was doing chemo, she said she had just finished. More chat and it turns out she had Hodgkins as well! How amazing! Probably the only other case in C.Ford. She was also treated by Dr Davies at SGH. Needless to say we spent the whole time discussing our experiences. She is so excited to have finished treatment and to be clear of the disease, but just a bit worried about her first checkup on Monday.
Went back to the hospital. Picked up the new prescription. The Dom Pérignon comes in a blister pack of 12 white tablets. And it's called ahh... Domperidone. Must have misheard, I knew it was too good to be true.
Had the chemo. This was quite good. Felt better than last time. My arm wasn't quite so cold where it went in. It did seem to take a bit longer than before, at one point the nurse checked and it looks like to drip was running a bit slowly. She turned it up and it finished after about 2 hours. It was a bit late, 4:15, but we didn't have to worry about the boys, they had a film night after school tonight and are also being picked up anyway. I got the updated appointments during the chemo, now all on (black) Friday's, but I still have the xio appointments - the secretary doesn't know what they are either but I shouldn't need to go for them (anybody got any suggestions? please add comments). I drove home after the session myself - I was fine. So next time I can probably just take myself and leave Sam at home if she likes.
Getting home and having dinner I can feel my tongue is a bit tingly. I hope it's not another allergic reaction. Still, I think we're ready for it this time. I can also feel a bit of throbbing in my armpit - good sign that things are happening.
A bit of discussion with Sam later about why we haven't had much alcohol lately. She claims to have been advised by her mother-in-law. I pointed out that alcohol was actually encouraged by the medics as relaxation and placed no special restrictions. A later call with my mum confirmed she had, at least, advised moderation. Not sure I completely agree.
Apologies if you think today's is a bit long and lots of waffle today.
Thursday, 14 May 2009
Back to hospital today
Don't panic. This is just for blood tests, stopped on my way into work this morning. They need to check my red-cell and white cell counts to make sure they have recovered from the last lot of chemo. If not they may have to delay my next chemo session.
A lot busier than last time I had a blood test. Probably waiting around half an hour. But at least it's better than waiting tomorrow morning.
For those of you not keeping up to date tomorrow is a black Friday - back for my second chemo session. I'm probably a bit apprehensive as I know what's going to happen this time. I might even need a haircut - nothing fallen out yet.
I'll try to update tomorrow at some point.
A lot busier than last time I had a blood test. Probably waiting around half an hour. But at least it's better than waiting tomorrow morning.
For those of you not keeping up to date tomorrow is a black Friday - back for my second chemo session. I'm probably a bit apprehensive as I know what's going to happen this time. I might even need a haircut - nothing fallen out yet.
I'll try to update tomorrow at some point.
Monday, 11 May 2009
Anniversary today
Sorry to say nothing new to report disease wise at the moment. Sam was pointing out that I have managed a whole week without going to a hospital. But I'll be back on Friday. I probably feel less tired now than I did last week.
But today is our wedding anniversary. Sam bought me "big brain academy" for the Wii. Seems my brain is only 764g, smaller than Sam's. I hope this thing is not eating my brain. We'll have to work on this. We also had a chinese for dinner - lovely. And a bottle of wine - that's a bit of a treat at the moment, but tasted great.
But today is our wedding anniversary. Sam bought me "big brain academy" for the Wii. Seems my brain is only 764g, smaller than Sam's. I hope this thing is not eating my brain. We'll have to work on this. We also had a chinese for dinner - lovely. And a bottle of wine - that's a bit of a treat at the moment, but tasted great.
Friday, 8 May 2009
Finished a week at work
Well I have got to Friday. It's not been too bad, but I don't feel I've had a lot of energy. But by today I'm a lot better. I should be be fine next week ready for the next session.
I should say that today was a green Friday, chemo days are black Fridays. This is because the rubbish gets collected on Fridays here, alternate weeks are black and green bins. So we can easily work out which bin to put out based on the chemo cycle (or vice versa).
I also managed to get the health insurance to pay up even though I'm in the clinical trial. On the basis that I'm only getting the same (possibly less) treatment that I would have got otherwise. There isn't really any advantage to me (except free parking), but at least I can say that I'm not taking NHS funds for my treatment. In fact, in these circumstances, I get the feeling that the NHS route is better as the insurance will only cover a very fixed inflexible treatment. We'll see how it works out.
The aching joints seem to have retreated to a continual ache along the bones of my left forearm. This is as expected, I think, as that was the arm where I got the chemo. It's manageable at the moment, they will probably switch arms next time, hopefully while that one is recovering. I'm also getting a very dry and sticky mouth even though I'm drinking a lot of water all day long.
I should say that today was a green Friday, chemo days are black Fridays. This is because the rubbish gets collected on Fridays here, alternate weeks are black and green bins. So we can easily work out which bin to put out based on the chemo cycle (or vice versa).
I also managed to get the health insurance to pay up even though I'm in the clinical trial. On the basis that I'm only getting the same (possibly less) treatment that I would have got otherwise. There isn't really any advantage to me (except free parking), but at least I can say that I'm not taking NHS funds for my treatment. In fact, in these circumstances, I get the feeling that the NHS route is better as the insurance will only cover a very fixed inflexible treatment. We'll see how it works out.
The aching joints seem to have retreated to a continual ache along the bones of my left forearm. This is as expected, I think, as that was the arm where I got the chemo. It's manageable at the moment, they will probably switch arms next time, hopefully while that one is recovering. I'm also getting a very dry and sticky mouth even though I'm drinking a lot of water all day long.
Wednesday, 6 May 2009
Back to work
Well I didn't put up anything yesterday, but I did make it into work. Not sure how productive I was. Spent a lot of time talking to people at work about how things went on Friday and the weekend. Good that they take an interest and are comfortable asking me. I also got a lot of response from ex-colleagues who I updated on my condition, many thanks to you all for your messages of support.
Apart from that I think I'm a bit low on energy. So I can't get concentrating on things well. It was a bit the same today, possibly better.
Otherwise I can feel a bit of a burning sensation in my armpit, not really painful - maybe that's the chemo burning up the tumor. Slightly aching joints - could be just tiredness and quite a dry, sticky mouth.
Apart from that I think I'm a bit low on energy. So I can't get concentrating on things well. It was a bit the same today, possibly better.
Otherwise I can feel a bit of a burning sensation in my armpit, not really painful - maybe that's the chemo burning up the tumor. Slightly aching joints - could be just tiredness and quite a dry, sticky mouth.
Monday, 4 May 2009
Much better today
After yesterday's scare I had a quiet day. No reactions to any of the medicine. So they must have located the stuff causing the allergic reaction.
Otherwise, I have been tired all day. Should sleep well tonight. Next step is going back to work tomorrow.
Otherwise, I have been tired all day. Should sleep well tonight. Next step is going back to work tomorrow.
Sunday, 3 May 2009
Kicked in the teeth today
WARNING : The following might get a bit worrying. But it turns out right in the end. Please don't read if you have a nervous disposition.
This was starting to get a bit easy going. I thought I had control of my medication.
After breakfast today I started to feel a swelling in my lips and tongue. I had to keep squeezing my lips to handle it. It was not very nice, but seemed to clear after about an hour.
But then later, after lunch, I had the same effect again. I was expecting it to clear. We all decided to go down to the shop together. Before we got to the end of the road I decided to turn back and let the rest carry on to the shops. Mistake!! When I got back the sweeling got worse. It was horrible I could hardly breath. Had to wait for Sam to get back, about 20 mins. But by that time it seemed to hav cleared again. Then I found that I was grinding my teeth, couldn't stop it. I was inclined to wait till it was a bit better before calling the emergency number. Sam was a bit keener to do it. Eventually I got her to call. They said go straight to A+E, it was probably an allergic reaction.
Managed to get the neighbours to keep an eye on the boys. Sam took me to A+E - some confusion about where to park and where the entrance was - hospital needs better signs. They were very good and saw me quickly. This was just as well as the swelling came on again quickly. They put in a drip to get some anti-hystimine into me. That worked wonders. They had a good look at what I was taking and decided it was probably the anti-sickness drug. I had to stay for 4 hours observation - Sam went home to sort out boys. Amazingly the man in the next cubicle to mine also had Hodgkins, although I think he'd finished his treatment, it was just the general A+E beds, I didn't get to talk to him though. They had a good look around to find some alternative drugs for me, eventually they found some. Sam came back a bit before they finished to see how I was. More baby-sitting from the neighbours, they were really good today.
Back home now and feeling much better. But it was a bit scary to say the least. Shouldn't have been so cocky going on the trampoline yesterday.
But it all justifies my current mantra:
"I'm only ill because the doctors say I am and I am only going to start feeling ill when they make me ill."
Did have some nice comments about my haircut from some of the medics.
This was starting to get a bit easy going. I thought I had control of my medication.
After breakfast today I started to feel a swelling in my lips and tongue. I had to keep squeezing my lips to handle it. It was not very nice, but seemed to clear after about an hour.
But then later, after lunch, I had the same effect again. I was expecting it to clear. We all decided to go down to the shop together. Before we got to the end of the road I decided to turn back and let the rest carry on to the shops. Mistake!! When I got back the sweeling got worse. It was horrible I could hardly breath. Had to wait for Sam to get back, about 20 mins. But by that time it seemed to hav cleared again. Then I found that I was grinding my teeth, couldn't stop it. I was inclined to wait till it was a bit better before calling the emergency number. Sam was a bit keener to do it. Eventually I got her to call. They said go straight to A+E, it was probably an allergic reaction.
Managed to get the neighbours to keep an eye on the boys. Sam took me to A+E - some confusion about where to park and where the entrance was - hospital needs better signs. They were very good and saw me quickly. This was just as well as the swelling came on again quickly. They put in a drip to get some anti-hystimine into me. That worked wonders. They had a good look at what I was taking and decided it was probably the anti-sickness drug. I had to stay for 4 hours observation - Sam went home to sort out boys. Amazingly the man in the next cubicle to mine also had Hodgkins, although I think he'd finished his treatment, it was just the general A+E beds, I didn't get to talk to him though. They had a good look around to find some alternative drugs for me, eventually they found some. Sam came back a bit before they finished to see how I was. More baby-sitting from the neighbours, they were really good today.
Back home now and feeling much better. But it was a bit scary to say the least. Shouldn't have been so cocky going on the trampoline yesterday.
But it all justifies my current mantra:
"I'm only ill because the doctors say I am and I am only going to start feeling ill when they make me ill."
Did have some nice comments about my haircut from some of the medics.
Saturday, 2 May 2009
Day after first Chemo
Felt pretty good today surprisingly. Sleep was on and off last night, just brain racing away I think, but I wasn't too tired this morning. The only thing I can notice so far is to my taste - I get a kind of metallic tingling on my lips, things taste a bit different, but not unpleasant. Even went on the trampoline today. Had a few goes in the Wii with the boys - I think I can explain my dire results on Mario Kart down to my illness or medication.
Not surprisingly I'm pretty tired tonight. Started dropping after around 8.00. Managed to stay up to 9:30 by looking for things to do, but I have to go now. I think I'll sleep well tonight.
Not surprisingly I'm pretty tired tonight. Started dropping after around 8.00. Managed to stay up to 9:30 by looking for things to do, but I have to go now. I think I'll sleep well tonight.
Friday, 1 May 2009
First Chemotherapy session
This is the day. The first treatment. At least now I should start to get cured.
Managed to get to take C&M to school today. That's always good.
The straight to hospital, got there about 9.00. A bit quiet to start with, but soon filled up. Get weighed first - 76.2kg. Went in to see Dr Davis quite quickly. Talked more about the treatment and all the drugs I will have to take to counter the effects. Also talked about the clinical trial, seems that if I sign up I have to do it on NHS, but the private cover doesn't give me anything extra anyway. I signed up anyway, but I can always opt out later. I will have to discuss with insurance why they won't pay up.
The I go in to the area for the treatment at about 10.00. Sit in a nice soft chair. The nurse - Elaine - comes over and sets me up with a drip. There are 4 drugs to go in ABVD, you can check on the website to see what they are. Elaine stays there to give the first 3 injected into the drip. She is very chatty and tells me a lot about what they are doing. It seems that they don't really hang around in my body, they go round once, do the stuff and then get flushed out. One of which is a bit red and comes out that colour when I go to the loo - so be ready for it. The last one just goes in as a drip, this one is sensitive to light so it is kept all covered up. It's going to do the same for my skin, so I have to be careful in the sunshine - I could easily burn up. Not good news on a beautiful sunny day. Elaine also tells me that the lump will start to get attacked very quickly and I should expect it to get smaller before my next session. The stuff going into my arm feels a bit cold, because it's at room temperature, not too pleasant, but it's okay. They give me a heat pad to help, but that only works for a while. I also comment that I can feel my lump tingling, Elaine says that is possible, it could be the drugs attacking it. It takes about an hour to all get through including flushing with some saline. First hair loss when she takes the needle off my hand pulling off the plasters - now that's painful.
At the end I feel a bit giddy getting up, but that's not too surprising after all the fluid. Then I have to get all the drugs for after. Sam spots that they didn't have the anti-gout stuff. Some confusion, apparently Dr Davies gave it to me, but we get it sorted. Afterwards, I see the radiologist - Dr Bates. We talk a bit more about the radio treatment and also the trial. If I do the trial I might not have the radio at all, but we will book it in anyway. Found out that the trial means one less chemo cycle if I get a negative PET scan, even if I get selected for radio. But still it doesn't limit my choices at the moment.
Back home by about 1300. Have lunch. Then, how sad, I do catch up on work (from home). A bit of crucial stuff to sort out so I got in contact with some people to help get it moving. But I still manage to go to pick the boys up from school. Great that they're excited to see me.
Need to wait and see when I start to get some impact from the treatment tomrrow.
To Gerard: my teeth are still in place as well!
Best wishes to all. Baldilocks.
Managed to get to take C&M to school today. That's always good.
The straight to hospital, got there about 9.00. A bit quiet to start with, but soon filled up. Get weighed first - 76.2kg. Went in to see Dr Davis quite quickly. Talked more about the treatment and all the drugs I will have to take to counter the effects. Also talked about the clinical trial, seems that if I sign up I have to do it on NHS, but the private cover doesn't give me anything extra anyway. I signed up anyway, but I can always opt out later. I will have to discuss with insurance why they won't pay up.
The I go in to the area for the treatment at about 10.00. Sit in a nice soft chair. The nurse - Elaine - comes over and sets me up with a drip. There are 4 drugs to go in ABVD, you can check on the website to see what they are. Elaine stays there to give the first 3 injected into the drip. She is very chatty and tells me a lot about what they are doing. It seems that they don't really hang around in my body, they go round once, do the stuff and then get flushed out. One of which is a bit red and comes out that colour when I go to the loo - so be ready for it. The last one just goes in as a drip, this one is sensitive to light so it is kept all covered up. It's going to do the same for my skin, so I have to be careful in the sunshine - I could easily burn up. Not good news on a beautiful sunny day. Elaine also tells me that the lump will start to get attacked very quickly and I should expect it to get smaller before my next session. The stuff going into my arm feels a bit cold, because it's at room temperature, not too pleasant, but it's okay. They give me a heat pad to help, but that only works for a while. I also comment that I can feel my lump tingling, Elaine says that is possible, it could be the drugs attacking it. It takes about an hour to all get through including flushing with some saline. First hair loss when she takes the needle off my hand pulling off the plasters - now that's painful.
At the end I feel a bit giddy getting up, but that's not too surprising after all the fluid. Then I have to get all the drugs for after. Sam spots that they didn't have the anti-gout stuff. Some confusion, apparently Dr Davies gave it to me, but we get it sorted. Afterwards, I see the radiologist - Dr Bates. We talk a bit more about the radio treatment and also the trial. If I do the trial I might not have the radio at all, but we will book it in anyway. Found out that the trial means one less chemo cycle if I get a negative PET scan, even if I get selected for radio. But still it doesn't limit my choices at the moment.
Back home by about 1300. Have lunch. Then, how sad, I do catch up on work (from home). A bit of crucial stuff to sort out so I got in contact with some people to help get it moving. But I still manage to go to pick the boys up from school. Great that they're excited to see me.
Need to wait and see when I start to get some impact from the treatment tomrrow.
To Gerard: my teeth are still in place as well!
Best wishes to all. Baldilocks.
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