Scout hut clean up

I forgot to mention yesterday that I have the metallic taste back again. But that's just normal run-of-the-mill stuff now. It would be good to be rid of it. I think it might be a bit more persistent now. I get a funny taste most of the time with tea and brushing my teeth. It's not really unpleasant, just wrong.

But I did manage to get down to the scout hut today to help out cleaning it up. I chopped down most of a tree, cleared the weeds and leaves from round the outside. Then I painted the outside, I even stayed an extra hour to finish another side of painting. Not all on my own of course. I managed quite well and it was good to get a chat to some of the other dads that I had seen around there.

No sign of tiredness and nausea. When I got home I even came back to do some more gardening in case I hadn't had enough.

Seems, though, that the aching arm is still apparent this evening, not really serious yet, but it's there. I can also feel a bit of throbbing in my armpit. Is that good or bad? Should the tumor be gone now, or is it good that I don't seem to have had that sensation anywhere else? It could be some return of sensation after the operation I suppose.

Still tomorrow should be good. Boys are off school and we're going to Legoland. The weather is getting hot, expected possibly 30C tomorrow.

BBQ at Paul & Sue's

Well today is the day after chemo, so I need to update status. I slept pretty well last night, woke up a bit early but felt fine. I haven't been feeling sick today. Just as well really as we had a day out at Paul & Sue's for a BBQ.

It was a very nice day. The company was good and the food was great, as I mentioned before one of my doctors warned that my biggest danger at this time of the year is BBQ food,but it hasn't done me in yet. I had plenty of chat, people were quite interested in asking me about how I was doing, but I'm glad it wasn't the only topic of conversation. It was good to meet some of my readers who gave me good feedback about the blog. They all knew a lot of info from the blog, but there was quite a bit of detail to fill in. I had a few comments about the haircut, in particular Bobby and Kate thought I should keep it. We'll have to see about that, Sam is not too keen, and I'm not sure about it when we get towards winter.

Thanks to Paul & Sue for entertaining us all.

This evening I can say that my right arm still seems to be aching, but not really painful yet.

Fifth Chemo session

Just to put a bit of context into things Michael Jackson died today (or we found out today anyway). A bit of a nutter really, but his music was good.

We had a late start today at the hospital.I had time, of course, to take the boys to school, but it was p***ing with rain so Sam probably was thankful to duck out of it.

I put up the last donations to the headshave. The final total is now £1816.85 + £381.29 giftaid. I think the fees amount to about 8%, so that should still put the total above £2000, quite amazing!

Got to the hospital just before midday. Had my weigh-in at 77.4kg, seem to have put on a bit. Then I got in to see the doctor early, this time it was Dr Samol, 4th in 4 visits. He seemed to be in a bit of a hurry. I had to tell him what drugs I needed on the prescription. He seemed to think that my aching arm is the in the vein, not the bone. But he didn't offer anything to ease it. I didn't really complain about my aching legs - that might be to do with the football. He didn't check my breathing, or look for lumps.So I was out quite quickly. Sam went back home and I stayed for lunch.

I had lunch in the hospital canteen, same as last time, It's okay, not too exciting. I still had an hour an half to wait for chemo so I went down to the Macmillan centre for the first time. One of the volunteers there came to talk to me to tell me what they did. They have lots of advice and infomation; you can get some alternative relaxation therapies as well. But I said I just wanted to sit down and read quietly, so she just got me a cup of tea.

It turned out that I didn't have as long as expected as the ward called down about half hour early to see if I was there. I went back up to see the nurse, this time it was Carol. She was quite chatty, probably as things are not so busy today. She managed to get the needle in without the bowl of hot water, the veins in my hand were quite prominent today, normally they shrink to nothing at this time. Generally the chemo went in fine today, no panics.

I had a chat with Mairead during the chemo. I spoke to her about my aching arms, she suggested that they could get something to help me. She had chat with Dr Davies and came back with a prescription. It was only for iboprofen, but at least it makes it a bit of official and saves about 50p with my free prescription.

Everything got all finished by about 3:30 today; a bit late to meet the boys from school. On the way home I did find myself 2 cars behind Sam taking the boys back home, so just about got back about the same time as them.

Spoke to Mum this evening. She was quite okay. Looking forward to going up to seeing the Roberts tomorrow. Then she's coming down here next Friday. Busy time Mum, don't overdo it!

Another chat with Gerard

Those of you with an eye on the ball will realise that today is the last day of my second cycle (see The Cheese Question). Tomorrow I start my third (possibly last) cycle. I'm probably a bit anxious about the treatment still. I'm probably quite used to it now, I know what's going to happen. But I still feel the ache in my arm, the treatment is okay, but I'm not sure what else might happen.

It was great this evening to get a call from Gerard, I had been meaning to call him, but hadn't got round to it. We ended up chatting for an hour. It certainly made more sense discussing about the treatment than when we spoke last, now I can talk about what's actually happened rather than what might happen. I still think he had a tougher time than I'm doing at the moment. But the main thing is that he is not sorry for himself at all but accepts it all and takes it in his stride.

I think the main lesson from Gerard is how important it is to write this all down. He wasn't always quite sure about the timeline of what happened and when. So, although this is sometimes a bit tedious, it is primarily supposed to be a record of events.

I (actually Sam) did remember to put out the black bin tonight!

Football Tournament

Sorry to those of you who have been worried about Sam. Just realised that I must have left you worried. Well she did survive, I don't think it was swine flu. We did have a few concerned phone calls about her. She was fine again on Saturday, just a 24-hour bug. But this is really about my health, the important thing is that I didn't pick it up! I must say I wasn't looking forward to catching it, Sam was very hot and feverish. But, then again, the boys didn't pick up anything either.

This time the aching arms have persisted for a quite a few days. I still have a bit of an ache. It seems to actually be in my bones and not in the veins as it is expected to be. It's getting quite bad sometimes.

Today we had the company 5-a-side football tournament. Our team was the Pizza Delivery Guys (PDG). I was 'keeper for all the games. Well I struggled hard enough last time out when I was well. As I'm now ill I didn't think I'd cope pushing myself too hard. Unfortunately we didn't get our rhythm going until the third game. But that was our last one after loosing the first two. But we still got to eat the Pizza at the end (someone else did the delivery).

Dodgy filling

Right at the start I managed to get a quick filling done at the dentist just before I started chemo ( see : Start to get info out at work). But now I seem to have lost that filling. I only just noticed at bedtime it had gone. I can't be sure when it fell out, it could have been days. Hopefully this is not a problem as they advised me right at the start that having dental treatment during chemo was not a good idea.

Another complete week at work

I just realised today that I have managed a whole week at work again without a break. Seems to have gone so quickly.

I think I didn't feel too brilliant today. My aching arm has been quite bad today, it kept me awake a bit in the night too. Otherwise I think my main symptom has been, ahh-umm, well wind if you must know.

Of course Sam now has to get a bit ill. She had a scorching fever last night, wasn't too well this morning. I did my bit by taking the boys to school today, which wasn't a problem. Sam does seem a lot better this evening. I suppose this is my first test of exposure to a bug. It's probably too late to avoid it, if I'm going to get it I probably already have. We'll see how I cope if I do, the next few days should tell, but I don't feel anything yet.

Midweek status

It's still pretty routine. I'm feeling fine so far this week. I've probably been a bit tired, but, as at the weekend, it's been late a night and I've slept very well. I am getting aching joints and bones, thought I might have finished with those. The strange thing about this is that I'm getting it more in my right arm. But it should be the Dacarbazine that causes the irritation and they had moved the canular to my left arm by the time I had that. I have also had a bit more of a lingering metallic taste for a few days, it hasn't yet gone away but it's not that bad.

I had the pleasure today of Dads' evening at Beavers with Matthew. That was good fun. He also got invested today. It's also swimming day today, both boys got moved up a group. Busy day!

Back to MK, see the NCT group

Well I did sleep well again last night. I think I woke in the night feeling slightly sick, but I was fine, just went back to sleep. The boys woke up at about 6:00 with some sort of arguing, probably too early for us. But we did keep them calm for a while before breakfast.

After breakfast and goodbye to Mum we went off to MK to meet up with the NCT group for a pub lunch. Great to see them all again. It's good to be able to keep up with the plans we had and not just duck out of things like this. It's good that they can get to see me and know that I'm, managing okay. Of course, in four weeks time, they will all be invading our house for the annual BBQ, see how I manage then, I can always start to feel ill at that time.

Back at home again now. I think I feel tired again. But, as with the last two nights, it's a good, been busy, sleep well tired. Not, the kind of lethargic, no energy, can't be bothered tiredness.

Visit to Mum

For the first time after a chemo session I had a really good night's sleep. I think I might know the reason why, but it's not suitable for publication here!

We went up to Sutton Coldfield today for a short visit to see my Mum. Up there for lunch today. We went to the graveyard to see my Dad's grave for the first time now it has a headstone. A very neat simple design, not too fussy, just the way he would like it. Makes it a lot more definite now.

I'm generally feeling fine today. I can still feel slight throbbing and tingling in my armpit, but nowhere else, so I suppose the drugs are still working on it. Felt tired by about 10:00pm. I will sleep well again tonight. Staying at Mum's tonight, the boys are sharing a room and not going to sleep, even though the tooth fairy should be coming for Matthew.

Fourth Chemo session. Talked to Christopher

Apologies to Katy for not keeping up the postings, your coffee breaks must be a bit boring. As you know we're away at the weekend (as long as I feel okay). So probably nothing else until Sunday at the soonest.

News of the chemo today. Appointment was 10:30 so I could take the boys to school, always good fun. I went in with Sam to see the doctor. Weighed in again at 76.9kg, stable from last time. This time it was another new doctor - Dr Lim, quite young Chinese. She was very pleasant. She said my blood results are good - my red and white counts are getting back to normal, so I'm coping fine with the treatment. But that's not a sign that the treatment is not working. I made sure that I got stocked up with all my needed medication as well.

Sam went back home after we saw the doctor. I hung around as the chemo was scheduled for 12:30. I had lunch at the hospital. But when I went back up they were still a bit behind. I didn't go through until 1:30 and the treatment didn't start until 2:00. It was Rhodora who was treating me again. She said, although there weren't so many patients as last time, there were a lot of injected treatments which takes up the nurses' time. My treatment was going fine until the Doxorubicin when Rhodora noticed that I had a white patch on my skin a bit downstream of the canular site. It was a bit like when you press your skin, but it wasn't turning back to pink. My skin seemed to be cold, so she put on a heat pad. That seemed to help, my skin went a bit red, but then it started to come up in a bump like a heat rash. Rhodora decided that was not good and she should give me some hydrocortisone and move the canular. The hydrocortisone did the trick, the bump went down. But she had a problem getting a new canular in, she first tried further up the same arm, but that failed, so she had to put it in the other arm. So I ended up with plasters all over my arms.

This is now 4 treatments completed. It seems like I'm really getting through it now, possibly only 2 more to go. I can't say I'm dreading these, but I'd rather not be doing it. It's probably what might happen in the next few days that's more worrying. Even today's needles excitement wasn't a problem.

Christopher had a school book yesterday that was about how life was children in Victorian times. It talked about how children who swept chimneys sometimes got cancer. It was an opportunity to talk to him about it. So I explained how cancer is a large range of diseases and Hodgkin's is a type of cancer. But the doctors know how to treat it and they should be able to cure me, I told him the treatment is called chemotherapy. I didn't go into too much detail, he hadn't really heard of cancer before, and I didn't talk about dying. We're not ready to say anything to Matthew.

Final reckoning on the Headshave

I haven't put up a post for a few days, I hope no one is missing it. Not too much going on as far as my illness is concerned. I'm feeling fine. The main news is the head shave collection. I've nearly collected all the money from work. The total came to about £1100, NXP is addding £400. Adding on donations from other people and gift-aid brings the total to over £2000. Most of it is on justgiving now if you want to check. Thanks to all for your contributions, if you still want to add anything the page is still open, see the link on the left.

Thanks to Katy who posted the link to the photos. You might not have picked this up from the comments:

http://www.wave105.com/PhotoWall.asp?id=53653

I suppose the reality of this overwhelming response is that people are a bit shocked about my condition. They feel that they want to do something to help, but they can't really do much. This is a way that they can actually do something. It's also the case that the cancer suffix to the disease has an impact. If I said that it was a very serious disease without the C-word I'm peoples reaction would not be quite so strong.

But tomorrow is a black bin day. So look out for an update tomorrow.

Completed a whole week at work

Sam painted a union jack on my head today. This was partly on the demand of Graham. But everybody at work seemed to enjoy it. I spent some time going round he office to collect the money. This took far too long, I ended up talking to lots of people. I got to speak to quite a few of the people being made redundant (or at least 'at risk'). Generally they seemed to accept their fate and optimistic about their prospects. Good luck to them if they are reading.

Well I did manage to do 5 full days at work this week (just about). I did finish at 4:30 yesterday for the haircut. This is the first time I have managed that since the 2nd week in March. I have been to hospital in most of those weeks, the others have been filled in with bank holidays.

Health wise I'm feeling fine. Aching joints a little bit, but quite bearable.

Head Shave Day

Well the funds kept rolling yesterday and today. I think we're over £1000 now - amazing! Many thanks to all my readers who have donated. Chris has even passed it out to some of his friends who have done too. One of them is also a former Hodgkin's patient, diagnosed >20 years ago. I bounced a few emails with him, it was interesting to contrast the different treatment he had. If you reading this Adrian, thanks for the emails.

Well the hair's got to go. There is just too much falling out now, it's really annoying. It also looks very messy, that may be because of too many little bits of hair spread around or just that it's a 3 week old grade 1 which is too long.

Cut to the chase, you just want a photo, so here's one. I sneaked off a bit early from work and picked up Sam and the boys, we got to the Barbers just before 5:00pm. They were just about ready for us. Then Connie and Rick (the DJ) turned up a few minutes later. I was wondering if they would be there as I hadn't heard from her since Tuesday. We had a few photos with me and Rick in front of a poster. Connie's camera had a flat battery, fortunately Sam had brought ours so she took them. For the haircut Keely wasn't there, which was a bit disappointing, so it was Julie who did it. I must say that the cut was not quite as short as I expected, so I did go over it at home with my shaver, it's now very much smooth.

We generally just had a bit of chat with Connie and Rick. It wasn't really an interview. Not sure what they will put on the web-site. They also said they will probably put an article in the Daily Echo (local paper). When I get more information I will post it.

It's a strange feeling around my head, any little draught feels cool and also when I lie back on the chairs.

Special treat from Sam this evening. We had a bottle of wine. I'd almost forgotten what it tasted like, lovely.

I'm still feeling fine at the moment though. I probably feel a few little aches in my left arm and round some of my joints. It's at a bearable level at the moment, hope it doesn't get any worse.

All go for the Head Shave

It's pretty non-stop again today with donations. Plenty of people coming up to me and lots of additions on justgiving. The total now is over £800, that's before giftaid and whatever the company donates.

I got a call back from the barbers, but they only left a message, I was away from my desk. I tried phoning back, but no answer. Then, at about 5:00 this evening I got a call from wave105. They were very interested in what I was doing. I told them a bit more about it and how much I raised by now. They want to feature my appeal on the radio and go along to the head shave, take pictures and do some interviews. I did manage to get back to the barbers afterwards and fixed a time for the shave as Thursday 5:00pm. This sounds like it will be fun.

Otherwise I felt fine today. I did confirm that I shouldn't need the anti-gout pills anymore. I got to my regular Tuesday swimming, it was quite okay really, probably slower than before (a bit crowded today) so not quite such hard work.

Appeal goes Ballistic

Felt pretty good today. No sickness at all. The panic to get the drugs yesterday wasn't needed, but I suppose I expected that.

So glad I got to work today. It was great. More people pledged money, lots coming round to talk to me, many for the first time. It's just great to be able to talk to them all. And the total is now £650! Looks like the company limit to match donations is £100, but that's still pretty good. I'm sure that's not the final total yet. I think people want to be able to help, but they don't have a way, this way they fell they are doing something for me. And they are, it's fantastic.

I did try to contact the barbers where I met the other hodgkin patient (see Second Chemo Session ). I thought it would be good if she did my shave. It was a very bad line on a mobile. They said they would call back, but I didn't hear anything.

I also emailed wave105 (the radio station running the appeal) to let them know what I was doing and see if they were interested. They didn't get back to me yet either.

Another kind of hospital day

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.

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!

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.

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

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.