Signing off

I think that this blog has served it's purpose and I should stop posting before this becomes too self-indulgent. I need to close so I'll try and sum things up. Just one last mindless ramble.

As I mentioned before I've been doing quite a bit of browsing round other cancer blogs. I feel an affinity with other cancer patients, it is a bit of a community. Is it the same for the likes of strokes or heart disease? Is it because cancer can strike "healthy" people for no apparent reason. I suppose, by definition, the bloggers will be relatively young. The general reaction seems to be why me, I'm too young. Otherwise the main obsession seems to be hair-loss - "Hey, I've got got a potentially life-threatening disease, but, oh-no I'm going to lose my hair!!!"

I've done a bit of totalling up on what I've been through over the last 8 months:

12 doctors (1 GP, 2 surgeons, 1 anaesthetist, 2 radiologists, 2 A&E, 4 oncologists).

>20 nurses

7 radiographers.

2 CT scans, 1 PET scan, 1 sonogram and 1 chest X-ray.

8 blood tests. Total of 22 jabs (including flu vaccine).

42 visits to 5 hospitals.

3 haircuts - I still haven't had it cut since the end of radio. It's about the right length now. The blond seems to have grown out now, it's normal colour but a bit thicker. Perhaps I should grow pony tail.

Total bill £11202. As a (er-um) private patient you will be pleased to hear that this has not cost you anything (unless you're an AXA shareholder).

Overall it goes to show what a lot of effort our society is prepared to do to keep people alive. There was no judgement about whether I was a deserving case or not (at least I don't think so).

I also tried to review all my side-effects. I gave them 2 ratings on a scale of 1 to 5 for severity and duration. I then multiplied the 2 numbers to get an overall ranking. The allergic reaction was the clear winner on severity, but it only lasted one day. The worst symptom overall was the aching arms - I think I probably mentioned them frequently here. It was also the one thing that I dreaded after each chemo, especially since I didn't know when it might happen

So where does this leave me? Do I carry on with life as though nothing happened? Or do I shove it in peoples faces - "look at me cancer survivor"? The truth is I don't want either. I don't want to forget it, but I don't want to be defined by it. I hope it's made me a better person. It wasn't as bad as I expected (but I'm not claiming it's always easy). If told me I could turn back the clock and not do all this I'd say no. I'm glad I did it, I hope I can be a better person for it.

Oh, and while this has been going on there's lots of turmoil at work. Bits of the company being broken off and sold. At the moment I don't know if I've got a job next year. Maybe I'd better start worrying about that now. Well not for a week anyway - off on holiday to Turkey tomorrow.

Farewell to all and many thanks for all your support and best wishes.

Ringing the changes / Changing the rings

Well Monday was my first post treatment review with Dr Davies.

He is now my parole officer. I am going to have to see him regularly for the next five years. Any sign of misbehaviour and I'm straight back inside. If I make it through the five years I can then get released and a free man again.

It was back at RSH today, haven't been there since the very beginning where we first met. Thinking back now to that day it was very scary. I didn't know what was going to happen and how things were going to progress. We were waiting for about an hour in the waiting room, then another half hour in the consulting room. I had a lot of time to think that day. Today I was on my own (Sam's working now, no big need for her to come along). I did get to the consulting room on time, but I was waiting half an hour before Dr Davies came. But this time I was quite relaxed whilst waiting. The other difference was that last time he seemed to come in with a whole entourage, today it was just the 2 of us. I did briefly nod hello to Mairead and Anne-Marie before I went in, but didn't talk to them.

It was the usual checks. He tickled me under the armpits and listened to my breathing a bit. Everything is fine, he's quite happy with my progress. He thinks there's very little chance of a re-lapse, but can't completely rule it out, we didn't discuss percentages or probabilities.

We got on to discussing my fattening fingers. A few weeks ago I had taken my rings into the jewelers to get re-sized. I had taken them off during my chemo as my fingers seemed to be getting swollen. I thought my fingers had probably settled down, but was shocked when I found they needed to go up 4 sizes! I had queried this with Mairead and she said to hold off until I discussed it with Dr Davies today. In the end I don't think I got an answer. I think I just have to accept that it's 13 years of stuffing my face, but I'll wait a little while longer before I do it.

We also talked about coping with getting back to normal, making sense of things. I think this is the real issue. I've been through something that's supposed to be frightening and horrific with my life on a knife-edge. But, frankly, I never felt that bad during the whole thing. And now it's all over what happens? Do I just brush it off and carry on as if nothing happened? Does it rule the rest of my life? What do I want? When do I get my medal and certificate as a member of the cancer club? How do I know which bin to put out on Friday? The Dr suggested I have a chat to Mairead, she's not a counsellor, but she can talk me through things a bit.

Otherwise, he did say I should get a 'flu vaccine as I could get a bit of a hit from it now. Never had 'flu before, or at least never been very ill with it, so this is a bit of shock. Seems I'm not quite so well as I was.

Next hospital visit is scheduled for 30th November. This will be the start of the 3 months cycle of checkups including blood test and chest X-ray.

Normality beckons

So I managed a full week at work for the first time since the middle of June, and only the 3rd time since the middle of March. I suppose that's normality of sorts. But that's how it is from now to Christmas.

The armpit is still a bit sore, but definitely improving now. I think it probably peaked early last week (1 week after the end of treatment). It now feels much better. The hair is returning gradually, not curly, but inexplicably, blond.

Early on in my treatment my doctor warned me against reading blogs. That probably applies to my own, which explains the unnecessary repetition. But now I feel unconstrained by this diktat. So I have now been trailing round to find that the Internet is awash with people detailing the ghastly effects of their Hodgkin's journey. For anyone still reading I can recommend one in particular. If you read the Independent you might have seen some of it already. If you think I was taking things seriously you should read this:
http://cancerouscapers.blogspot.com/

Another week on

Nearly had a full week at work this week. But we had a group outing this afternoon playing rounders on Southampton common. It was a lovely day for it, great to be out in the early autumn after a miserable summer. I did manage to hit the ball a few times and score some rounders. But, as a fielder, I was a bit rubbish. Perhaps I have an excuse this time for being out of condition.

But next week I think I will have to do a full week, all day, every day. Scary.

The armpit is still a bit sore. Skin red and swollen. It looks quite dry and looks sunburned and I think I have lost a bit of hair too - I won't worry about that. I think it got worse earlier this week, but it's a bit better now.

I had a chat with the new OH nurse at work yesterday, she was quite impressed that I'm coping fine, but offered lots of support if needed.

Volunteer Needed

The hair is coming back slowly. It's starting to look a bit like Action Man realistic hair (for anyone who can remember that). It doesn't look as thick as it did before. Not sure if that's because it's still quite short or that maybe not all my follicles have come back yet.

I now have a bit of a cold building. This is the first time for 4 months that I've been ill and just at the point where my immune system should be getting back to normal.

I had some bad news today - I found out that I am no longer able to be a blood donor - ever. This is worse than finding out about the illness really. Having got through all the treatment and feeling that I am now cured I find that in some sense I never will be. So the bottom line is that I need someone to take my place. So, if anyone is still reading this, can you volunteer:
http://www.blood.co.uk/

Normality starts today

I had a day off work today. It's the last day of the school holidays and my last chance to take a full day off with the boys. Unfortunately it has been miserably wet, so we ended up going swimming after a false start going to the bowling alley which had a massive queue.

No more shaving the head. So, by the end of today, I have a fine covering of stubble. Pretty even really, no worn patches to note. I can also say that my right armpit is quite swollen. It's almost as though it's swollen up to the same sort of size it was before the operation. So, after all the treatment, we're back to where we started. And it still might get worse!

Last treatment day

Well I mentioned last week that it was 6 months since I started on the road by visiting my GP. Today is 1st September and it is now 4 months since my first chemotherapy session and is now my last day, neatly rounding things off. It makes it a lot less than the 6 months that doctor Davies quoted at the start.

As a celebration I extracted my last pair of socks that I had saved up - Dennis the Menace - I haven't worn these since my wedding day. In addition Sam painted on the Union Jack that she did after I first shaved.

For the first time during my treatment the car park next to the oncology centre was full. I had to go round to the multi-storey, which had quite a bit of space. But I didn't realise what a trek it was from there through the hospital. Must be a bit of a bank holiday backlog in treatments, I thought that when I went past the waiting area at the other machines, it was pretty full. But when I got to machine "D" it was quite empty, the checkin still said 40 minutes delay though, hope it's not broken again.

As it was the delay was only about 15minutes. Richard came out, he said he had trouble keeping a straight face when he first saw me whilst getting the previous patient. He made Clare wait in the treatment room because he thought she would burst out laughing.

Well the last burst on the machine went fine. There was a slight pause after the head moved round to the top, I thought it was broken again, but it did finish the routine. I said my goodbyes to Richard and Clare - "hope not to see you again" - it's probably always like that. She said I had brightened up her day, which was great. It must be hard for them as they have to treat a lot of very ill people all the time. Unlike at the chemotherapy they only have a short time when they see people.

I took some cream cakes into work to celebrate the end of my treatment. It's a way of making everybody aware of it.

This evening I went out for a meal with Sam to celebrate. Also celebrating Sam's new job - she officially started today, although she's not in work until Thursday. We went into Southampton to an Indian called Poppadom Express. First time we've been out since we moved in to this house.

I have to start to adapt now to the concept of normality. I still have my antibiotics to take for another 7 weeks and I have an appointment to see the doctor on 28th September. But otherwise things can get back to normal.

Breakdown day

Well things have been going quite smoothly at the oncology centre up to now. No holdups since the first day breakdown.

I should have been suspicious when I checked in and the machine quoted an unheard of 40 minute delay. But I just settled down to wait. It was probably only about 20-25mins when I got called in. After the usual pleasantries - I complained when they asked my birthday that they should know it by now. The sock inspection revealed that I have got to the desperate stage of wearing my Christmas reindeer socks.

Quickly lined up on the bed and I lay still. I got a blast from underneath. The head moved round to the top and I waited for it to shoot again, but it was all quiet, I just lay still waiting. After a couple of minutes Richard came in and gave it a poke, but it still didn't start up. So I had to get out while they called the engineer, who said it was at least 1/2 hour wait, it seems the earlier delay was due to problems too. But then Richard said, since I was halfway through my treatment they'd try to put me on another machine. So I went round the corner to the "B" machine. Pretty similar but the picture on the ceiling has more leaves falling off the trees. But I got zapped and all was fine, just a bit late.

Let's hope the machine holds out for one last dose on Tuesday. I think my armpit is feeling a bit more sore, but I'm coping.

Found the doctor today

I checked my sock drawer and I can just about eke them out until Tuesday. Yesterday was my fathers' day socks and it was superman today and I then have 2 more left. Not sure if mother-in-law thinks I need better fancy socks or that it's a bit undignified and I should get some plain ones - especially being a sick person.

Today is significant - 27th Feb was the day I saw the GP. So it is now my 6 month anniversary. Although, at that point, things were not very serious, it didn't get bad until a few weeks later. But it's nearly all over now.

But Thursday is doctor's day. This time I did get to see Doctor Bates. He didn't have too much to say, just checking me out. He did say that the swelling and tenderness in my armpit might get worse for about two weeks after the end of radio. It is getting more noticeable as things go on, though far from being painful, just a bit uncomfortable.

Final Week now - can my socks hold out?

Everyting is still okay in the radio. No big problems. I think the skin is getting quite sore and tender. I can feel the area under my armpit - it seems a bit swollen. But only 5 more treatments I think I can last out. The main lingering after effect of the chemo - aching right arm - seems to have died away finally.

My main problem is with socks. I now have to raid my sock drawer every day to find some good ones. Yesterday Mr Incredible, today Homer Simpson. Not sure if I can keep this up for another 5 days!

Radio - now past halfway

Not had any updates for a while. Radiotherapy has become a bit routine over the last few days. It's been quite good, I don't have to worry about getting up in the morning - so no alarm and no hurry at breakfast time. It works quite well for the school holidays.

I just turn up and book in. The computer usually says "on time" or "running 10 minutes late". But it usually doesn't mean anything. On Monday it said running late but I still got in early and was out before my appointment time. When I arrived today there was no one in the waiting area and they called me through quite quickly. But, just as they were getting ready, someone came in and asked if they could get done quickly as they had a bus to catch. Since I was early anyway I couldn't object and I was expecting to wait for the doctor afterwards. I still got in on time.

There was a new radiographer this week - Clare, she'd been working elsewhere last week. Yesterday she commented on my stripey socks, so today I had to find some better ones. They got comments too.

Saw the doctor again today after the treatment. Doctor Bates wasn't in, so I got to see Dr Ayres again. She was quite pleasant, checked me over and was quite pleased with my progress. She's not expecting any problems. I just told her that my shoulder was getting a bit sore - skin feels a bit tender but not painful. She said that was not unexpected, just keep rubbing the cream on it. I asked her about the appointment I now have in September - she said they will just be checking that I am recovering okay from the treatment and will let me know what happens next.

Well today was treatment number 8 out of 15. So now I'm over halfway. I can see the light at the end of the tunnel.

Radio Day Three

Finally I get a day when the treatment is at the time for my original appointment. Although, when I got in and scanned my code, it said the machine was running on time. But, in the end, I think I was ten minutes late. A bit of reverse logic there I think?

I was on the same machine as yesterday. But there was only 2 radiographers, one new one, the other was the same as one I'd had on the last 2 days. The new one was a bit surprised at the size of the mold I have - about 15cm wide and fits across the width of my back; usually it seems they should be the size of the whole back. But she did seem to think it did the job. The usual pushing and prodding to get me in the right position. Then a few quick zaps and all done. At the end they told me I should see the doctor before I leave, this seems to be the usual routine on a Thursday.

I had a little wait for the doctor. It turned out that it wasn't doctor Bates who I saw at the start- he's on holiday - it was doctor Ayres. I wasn't waiting too long, but I got chatting to some patients who were from Jersey. They have to come over and stay in a hotel for radio treatment, a bit of nuisance I suppose, but they seem to be cheerful enough - at least they're getting treated. When I got in to see the doctor there wasn't much to say really. She just wanted to make sure I felt okay, had a quick lot at my armpit and that was it. No special instructions or precautions.

Second radio treatment

I felt okay this morning. Perhaps a bit of sensitivity around my armpit, but that maybe because I'm aware of it. I had my regular chat with Mary (occupational health nurse), but there wasn't too much to say. She's quite happy with my progress and doesn't expect me to have any problems.

Back to the hospital this evening. About an hour earlier than yesterday. Reception was closed again, but there were more people waiting around than yesterday. When I checked in it said 10 minute delay again. Well I wasn't waiting that long before they called me in - same radiographers as before. But this time it was to the correct machine - clearly it's fixed now. This machine is supposed to be for treating the top of the body, the other one was suitable for any part of the body - I couldn't really tell the difference. There is a bit of a difference when I lie down on the bed - the picture of the tree is no longer in blossom, this time the leaves are turning brown, is it suddenly autumn already?

This time they had to shove and push me around a bit to get the correct position. Clearly I'm not as good at sitting straight as I was yesterday. Once they were satisfied I was in straight and they adjusted the bed a bit it was off again. The big head in position, buzzed a bit, they moved it round, buzzed again, then all over. It was probably quicker than yesterday, but they took no pictures this time. I queried at the end about the size of the area that they were targeting, the radiographer said he'd mark it for me tomorrow, but he did indicate it was quite a large area.

This evening I think my armpit does feel a bit more tender. But again I can't be sure if it's just because I'm aware of it - it's quite mild anyway. Next treatment is tomorrow morning, two down, only thirteen more to go.

Proper start to radio

Sorry for the delay in posting. The laptop was in repair with the IT dept and I couldn't be bothered to go to the home computer.

Yes I did start the treatment today. I got to the hospital about 6:15. It was very quiet - reception and shop closed. But I have a bar code to check myself in, it even gives an estimate of the current delay - about 10mins. So I sat down in the waiting area by my expected machine. After a few minutes the same radiographer as yesterday came up to me and asked me round to the other machine. It seems the normal machine has not yet been fixed. As I waited again someone else came and introduced himself and told me to wait for another minute. Then another one came and said hello and then led me round to the machine. All three of them then seemed to be ready to treat me. The first thing to sort out was that tomorrow's session is to change again because of the breakdown. That's now at 5:30 instead of the morning. It might be on the other machine, but they're not sure if it will be repaired by then. We had a bit of discussion about what was going to happen and how.

So, down to the actual treatment. They had the mould that was made 2 weeks ago which they put on the bed for me to lie on. They were very pleased as I seemed to lie down pretty straight right away. Looking up at the ceiling as I lie down there are some pictures looking up into a tree in blossom, takes your mind off things I suppose. They checked the alignment with some lasers, then there was a bit of fine adjustment of the bed back and forth a bit. They then put the big round head over me and went out of the room. The head moved around a bit and buzzed for a few seconds which was when it was doing the treatment, apparently they took a few pictures as well - otherwise I didn't feel a thing. One of the radiographers came back in and moved the head underneath. He went out again and it buzzed again for a few seconds, I still didn't feel anything. That was it then, I was in for about 20 minutes, the actual treatment was a matter of seconds.

First (scheduled) radio session.

Back to hospital today. It's new the new regime of radio rather than chemo. I can't help feeling, as I've said before, that this is all a bit unnecessary having had the results of the PET scan. But at least I have that knowledge.

When I got to the hospital this morning, about 15 minutes before the appointment, the receptionist couldn't find my appointment. After some searching she said they weren't expecting me until Wednesday - she couldn't explain why. I then had a discussion with someone else (not sure who or what her position was) who conjectured that the change was because the doctor had changed by prescription or they had not had enough time to get things set up. After a bit of a wait I then saw someone else (a radiographer) who told me the problem was that the machine was out of action because it was being repaired. Why did the other two not know that? He gave me a new first appointment of tomorrow evening. I also now have treatment on 18th August which was to be a day off, so my last treatment is still 1st September. I then had a bit more discussion with the radiographer about what happens during the treatment. He showed me the pattern for the mask that they would use to target the tumor. It was a rectangular about 10 x 5 cm with some chunks cut out. It looks quite precise, but it is a lot bigger than the 13mm tumor size.

Back from holiday

Got back from Italy late this evening. We had a great time, as always it was just too short. A lot of time in the pool plus a few trips into the mountains. The boys just wanted to treat me as a surf board or a mobile diving platform. They have no respect for me being sick, I'm just a dad with no hair. I suppose, at least, it's not their problem - why should it be? I did have one advantage - I didn't have to wear the annoying swimming hats. No new symptoms whilst away, but I still get sore arms when I put pressure on them which happens quite a lot when they boys are playing in the pool.

Off on holiday

It's getting a bit quiet on here I suppose and it's going to get quieter. As I mentioned in a previous post we're off to Italy tomorrow. Menaggio to be precise on the shore of Lake Como, . A truly beautiful location, we're very lucky get the chance to stay there, thanks Peter and Brenda. I didn't actually check with the doctors if I was allowed to go or not, but I don't see ther being a problem. I'm feeling fine apart from this slight soreness in my arms when I put a bit of pressure on.

I won't be posting from there. So the next time will be 10th August when I start the radiotherapy.

Sense of normality

Just a quick note. I was having a drink of tea this evening and though it tasted okay. Not dramatic, but these things become important.

I think that the last few days I haven't noticed a bad taste from drinks. In particular the main one is toothpaste - hardly dramatic, but at least I don't feel a yucky taste with it anymore. At least the important drinks never had a problem - beer and wine.

CT simulator

Had a great weekend round with Dom and Lynda. The boys always go a bit mad when they meet up with their cousins. Had a fun day on Saturday at Eureka in Halifax, they all enjoyed that. We also booked a short break to Italy next week, 6 days, it was the only chance we had before the start of radio. We got back very late last night and flaked out in bed.

Fortunately this morning I didn't need to get up early as I was back at the hospital again. In the shower this morning The Monkees were on the radio again: same as on operation day, is this a sign - complete circle? I suppose I still have a way to go, although I think of myself as being cured.

Today's hospital appointment was the CT simulator. This was down in the Oncology centre. I thought it was the same place as the CT scan I had 2 weeks ago, but it was downstairs. I discovered a whole new part of the hospital, there's a whole lot down there, mainly radiotherapy I suppose.

I had a bit of a wait, but not long. Then I was called in, one of those rooms with the big doughnut machines in the middle and a control room behind a glass screen. But I think this machine is just for simulation, setting up for radiotherapy. There were 3 radiographers in there, they were wondering how to target my armpit, seems to be a difficult place to hit. I didn't establish if this is a bit of an unusual one for them. They had me lie on the moving bed on top of a plastic tube which would form into the shape of my back to keep me in the same position. They pushed and nudged me to get into just the right position. They then made some pen marks on me to allow them to get things lined up accurately. The pen marks were filled in with an injection to make it permanent - basically it's a tattoo. I've been poked by lots of needles in the last 4 months, but I think this was the most painful. I then had to lie still for a few minutes while the bed slid in and out of the doughnut with some lasers shining at me to line things up.

At the end they seemed to indicate that they will target quite a large area around my armpit. So, after all the careful millimetric lining up get a 13 mm target they will probably shoot at about 10cm. Hardly the same as lining up a silicon wafer to make nanometre silicon chips.

I had a discussion with the radiographers at the end to find out how things will progress and what effect I should expect it to have. A lot of soreness it seems and probably tiredness which could be progressive as the treatment goes on. I suppose it hit me a bit that radio might be quite hard. I was thinking I was now cured and the radio would be a bit of a breeze compared to chemo, but it might be quite hard. It really is a new stage and I've still got a bit of the journey to complete yet. I only had 6 treatment days for chemo, but I'll have 15 for radio over a shorter timescale.

Seventh Chemo session / Scan results

Today I get to find out the scan results. I might have more chemo today, it could be all over.

No chance to take the boys to school - end of term this week. So we just dropped them off at friends before we went to hospital. I went in with Sam.

Weigh in today was 79.1kg - a bit of a jump, I'll have to keep an eye on my weight after this ends. We were hanging around for an hour before we got to see the doctor. Sam was mainly keeping an eye on progress of files between the offices. Must have been swapping out the awkward cases. She was mainly concerned that I did get to see Dr Davies. She thought my file did end up with another doctor, but Dr Davies recovered it just before we were called in to see him.

So, first up, we got the scan result. My tumor was given as grade 1 (on a scale of 5). Basically they could see no sign of activity in it. The lymph node was measured at 13mm, only slightly larger than a normal size which should be 11mm. They also confirmed that there were no other tumor sites found - I suppose it would be a bit unlikely that they would develop during chemo. I am now classified as in remission. So there is no more chemo which I don't think I'll miss. But I have been randomly selected to have the radiotherapy as part of the trial. We discussed a bit about this, Dr Davies did suggest that I could stop treatment now, but I would not be part of the trial and not have the extra scans as part of that. I'm probably a but disappointed as I hoped not to do the radio. But I did sign up for it and commit myself so I'm going through with it. At least at has meant that I miss a cycle of chemo. He did say that the radio will make sure that any lingering disease cells are killed off for sure.

We discussed a bit about swine flu. He recommended that I (and Sam) should get the vaccine when it is available, my immune system is still going to take some time to recover. I should get priority. I still have a prescription for antibiotics for the next 3 months.

We left after seeing the doctor. Picked up the boys and then off to Dom & Lynda's for the weekend.

Next step is on Monday, back at the hospital to have a CT simulator. I think this is just to measure me up for the radio, not sure exactly what will happen, but it's not quite the same as a proper CT scan. I will update on Monday. After that my radio treatment is virtually every day from 10th August to 1st September.

PET scan at St Thomas

This weekend was our third in a row with visitors. This time it was Louise, Luca & Victoria from Switzerland. We hadn't seen them for 4 years, so there was quite a lot of catching up. We had a great lunch in the New Forest followed by a good long walk on Sunday. They all went off on Monday morning for a cruise on the Queen Victoria. For me, it's Monday, which is now a scan day. This time for a PET scan at St Thomas's in London. Here's some info about PET scans PET-CT scan: Cancer Research UK: CancerHelp UK .

I went off about 11 and I was there about 1. The PET centre is right in the bowels of the hospital, in amongst the kitchens and laundry. I was a bit early but they saw me straight away. They checked my height and weight. I got sat in a chair and they put a cannula in my arm while they asked me some questions (usual health stuff - I know the answers now). I then had to lie down while they put some of the radioactive stuff in my arm, didn’t seem very much and they took the cannula out straight away, so no pumping stuff in my arm during the scan. Then I had to lie down and relax for an hour and half, presumably to let it all spread evenly round the body. I wasn't allowed to read, but I could listen to some music. After that I put on a gown and went to the room with the machine. Like the CT machine it was a moving bed going into a tunnel. I went into the tunnel, then it just moved a bit and stopped for a few minutes. It repeated that quite a few times until I reached the other end. The whole thing took about 30 minutes. I was then free to leave, I was out before 4.00.

Afterwards I went round to meet up with Kathryn who’s working in London just across the river from the hospital. We went out to have a drink at a pub nearby, then we went to eat at Pizza Express. I was quite hungry as I hadn’t eaten since breakfast (couldn't eat before the scan). We hadn’t had a chance to spend some time together before, it was good just the two of us. We walked back to Waterloo together, Kathryn took the tube back home. I had to wait for the next train, but I was still home for 10:00.

Still overdoing things

Well the MK reunion was a great night out. Excellent turn-out from all the old friends. It was good to see that everybody is quite settled into new jobs again. Unfortunately Mark got the whisky flowing again back at his place and we carried on too late. Then got up early on Friday to get back to work. Lunchtime was Steve J's leaving drink at the pub. Not surprisingly I flaked out by the evening. Perhaps the tiredness is not due to the treatment?

Still, I slept very well last night and feel great today. I have still got sore arms, with the feeling of sunburn. It seems to come in the occasional wave, not massively painful, but definitely uncomfortable.

More visitors this weekend - Louise, Luca & Victoria from Switzerland. Maybe not quite so manic as last weekend I hope. At least Monday I'm not working as I have my PET scan in London.

Tired today

I'm feeling quite tired this evening. This could be a cumulative effect of the weekend and also a late night last night when Paul W came round for dinner. Not seen him for ages, we had a great evening catching up on what's been going on and recalling old times.

Otherwise I do have aching arms today. This is a bit different to before, it's more a feeling of aching muscles than the aching bones that I've had before. My skin feels a bit sensitive - like sunburn and my skin feels poked and prodded with holes. I seem to have some hard skin on the edges of my fingers, that might be a chemo side effect, I'm not sure. I should also say that I still have some tingling and twinges in my armpit. I hope all this clears up in the end, I wonder what I'll be left with afterwards.

Hope I've recovered tomorrow. It's reunion night in MK and I'm staying away overnight. Hope I can cope.

CT Scan today

Another CT scan today. This time at SGH. But it was similar to my first one at the Nuffield.

I was in early at 8:00am. Had a contrast drink for and hour. Then I was in. They put a cannula in my arm, but no need for a gown, I just went in in my clothes. Then I lay down on the bed, they wired up the drip. I went in and out of the machine a few times then they pumped some more stuff into my arm. I had the metallic taste and warm feeling again. A few more in and out and I was done. All over in about half an hour.

This time it's linked to the PET scan I'm going to have next week for the trial. As I said on Friday, this could be the end, but let's just say it's a new stage before I find out a week on Friday. I also ran out of some drugs today, I have used up all my anti-sickness and steroid pills, maybe for good? I still have my antibiotics for the next 2 weeks. I still have tingling in my armpit (probably said that before - is it good or bad?). I feel I have to go with the flow on this depending on what results I get next week, if it's more treatment at least I'll know I need it.

I seem to have quite a few aches and pains in my arms. These seem to be bruises around where are the needles have gone in. This is not the usual Vinblastine burn, that's usually later. Not feeling tired (Sam is though - probably the weekend).

NCT BBQ weekend

Following on from Friday. I don't seem to have any more tingling in my feet or any nausea. My nose seems to have warmed up as well.

We had a full crowd of the NCT group for the weekend. Not good weather for the BBQ, but we went ahead anyway in the rain. Although it was just me (supported by the dads - thanks guys) outside cooking. Women and children all inside. So I survived another BBQ without side effects.

Alcohol units were of course high. Funny how, early on in the treatment, I hardly had anything, especially the day after chemo. Now, it's just another day. I think there was a bit of chat about my disease and treatment, but it was not dominant. I think everybody was quite relaxed about my condition, especially since we met a few weeks ago. That suits me fine really.


Amazingly we piled all the children in the playroom (plus Lisa in the end). They all went to bed late - we went even later of course. Then they all woke up too early - poor Lisa.

Sunday we all headed back to the beach at West Wittering. Fortunately it was much better weather then Saturday. They all had great fun building castles on the beach and splashing in and out of the water.

Sixth Chemo session

Black bins today (and brown ones too - baaah).

Appointment today was for 10:00am, so I didn't have much time after I dropped the boys off at school. Went with Sam this time.

Weigh-in first: 77.9kg. That's about 1.7kg up from the start, I need to keep an eye on that, but I suppose now is not the time to get too worried about it. First off we got called in for a chat with Mairead. Normally she has just caught up with a chat in the waiting room, this time we sat down in a consulting room. She wanted to talk about how Sam and I were feeling. We spoke a bit about what happens next with the scans. We made the request that next time round we should talk to Dr Davies, as we'd seen different doctors the last 3 times, I should get the scan results at that appointment.

We waited a few minutes then got called in to see - Dr Davies, wow first time in 8 weeks! It seemed easier talking to him than a different doctor who I hadn't seen before. I still had to update him with what's happened since. I also mentioned the numb feet, he was quite interested, it's probably the Vinblastine, but he doesn't want to change the dose at this stage. I said it wasn't too severe and I could handle it, we'll see what happens from now on. I also mentioned having a cold nose for the last few days, he laughed, I suppose you can't blame everything on the treatment. Afterwards I sorted out the next appointment, noted that it should be with Dr Davies, plus some provisional chemo sessions.

Back home for lunch and shopping for tomorrow's BBQ with the NCT group. Then I went back to hospital for my chemo at 2:30. They were running late again today, I got in at 3:15. This time it was Carol who set me up to start with, but then Sally took over. But I did get a reaction from the Vinblastine as I did before: Fourth Chemo Session. This was just a blanching and my arm was quite cold, but not painful or uncomfortable. We waited for a while, but it didn't really warm up, so in the end I had another cannula put in the other arm. After that the other drugs went in quite safely, my left arm warmed up.

It's strange, but this could be my last chemo session. I'm trying not to build it up at the moment - I don't want to get too excited about it and then be disappointed.

This evening I think I have a bit of tingling in my feet - similar sign to the numbness. I also have a vague feeling of nausea this evening. I hope these are not signs of more serious reaction this time. I have to cope with 17 in the house tomorrow for the BBQ. I should also note that Tim appears to have recovered from his "Swine Flu" and is now off in France.

New job for Sam

One thing that's happened in the last few days is that Sam had actually got a job (or a paid one anyway). She's starting as a teaching assistant from September. So I now have to get well again by then as I won't have a carer anymore.

I decided to go in to hospital today for my blood test instead of Thursday. I thought it might be a bit quieter since Thursdays have lots of people getting tests at the Warfarin clinic. It didn't turn out any better, I was still waiting about 40 minutes.

I have noticed in the last few days a bit of numbness in my feet. This could be linked to my treatment as it is a possible side effect. But then it should have started soon after the start. But then, as usual, anything that happens to me gets blamed on the treatment.

We were expecting Katy and Tim down to stay tomorrow night. But we had a call this evening to cancel. Seems that Tim has gone down with flu-like symptoms - could be the dreaded Swine flu! I suppose we don't want it in any case regardless of my condition. Hope you're well again soon Tim and still make it to France.

Annoying letter from the Council

A lot of comments from my readers have shown that you all like my green bin/black bin description of treatment weeks. Some of you will also be aware of the new phase my treatment that is about to begin - over the next few weeks I will be having scans on a Monday. Monday is the collection day for food waste here from the brown bins. I was, therefore, getting ready to announce the brown bin day.

But to my horror we have received a letter from the council saying that, as from this week, brown bins will be collected on Fridays. Do these people have no idea what confusion this will cause? I'm not sure how I'm going to remember my scan dates.

Feeling good today. Just knackered a bit from swimming this evening.

Grandparents weekend

Well the grandparents all turned up. They were all well behaved, no fighting over the boys. The main problem was that the unit consumption increased to serious levels. There was a bit of a discussion about my condition, but generally I think they're all quite relaxed about how I'm doing. We managed to get out to the seaside at West Wittering on Saturday, hot day, but I didn't burn, followed by BBQ at home (well cooked, but wine was drunk). Then Sunday lunch in the New Forest, more units.

I bumped into Paul Williams at work today (ex-colleague from NEC). Just met in the kitchen at work, he's working here for 4 weeks. Of course he made a comment about my lack of hair. I just came out with me having chemo. Funny how this just tripped off the tongue, no problem. I haven't really had to explain to anybody for quite a while. The last time I did must have been during the early part of treatment when I didn't really know what was happening or going to happen. But doing it now is a lot different, I know what's happening and how I'm coping. I think Paul was a little bit shocked though.

I'm probably feeling pretty good at the moment. I haven't had too much of an ache in my arms, I can feel it but it is very tolerable. I'm still getting the odd tingle and twinge in my armpit. Not sure if that's good or bad. Treatment still working? Or why do I still need it?

It ain't half hot mum

I suppose I left my last post on a cliffhanger. Well we did go to Legoloand on Monday. It was a great day out. We managed to get on lots of rides. It was a bit busy, but the queues were not too bad, some rides had none. I don't think it was a real trial for my condition. The main problem was the heat and the sun. I did keep out of the sun, except that I did loose my cap on the log flume.

Since then I have been feeling fine generally. I had a little hint of the ache in my arms and took some ibuprofen. A little bit of indegestion, but nothing serious. Sleep has been fine, even in the hot weather.

I had a emal today from the wave105 PR company. They sent me a copy of an article in the Portsmouth news, also a link to another website. Here they are:

John uses his head to raise cash

A close shave for charity

Big danger day tomorrow, though, full set of grandparents to stay for the weekend. I hope they take care of me.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.