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.