Thursday, 30 April 2009

One day to go


As requested, here is a picture of my new haircut. Don't worry, if this looks scary it's going to get worse! I'm starting to get used to it now. Certainly saves on shampoo.
Had a chat yesterday with Clive (Sue's ex brother-in-law) who was treated for Hodgkin's 2 years ago. He seems to have come through it quite well. Gave me a few tips. But certainly had a positive attitude.
Tomorrow is the start of the chemo. Don't know how this will progress, but we'll know soon.

Monday, 27 April 2009

Hair cut today

Chatted to HR and occupational health today. Generally very supportive, advice is not to push myself and stay away if there are too many sick people.

First drastic action - I got a number one hair cut as a pre-emptive strike against hair loss. It was a bit cold not having that extra cover on my head. But summer is coming soon, isn't it?

More eating good food while it still tastes good. We had a big bowl of pizzocheri. For those of you who don't know the delights of his dish:
http://mestolando.com/recipes/pizzoccheri-pasta-savoy-cabbage-potatoes-cheese

Probably not too much happenning now until first Chemo on Friday. I'll try to put something in then if I feel okay.

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Sunday, 26 April 2009

Francesca came today for lunch

And she brought Katy & Tim. She's really get to the fun cheeky toddler stage. It was great to see her playing with Christopher and Matthew.

We had lots of chats with Katy & Tim. Quite open generally and not always about me. Great to see them all.

Saturday, 25 April 2009

Day out at Paulton's

Sam and I took the boys for a day out at Paulton's. This is a local theme park, first time we've been. Not as big as the likes of Alton Towers and Chessington, but just about right for them at this age.

We realised after the first couple of rides that last night's take-away curry accompanied by too much to drink and a late night was not the best preparation. Being tossed around in every direction on a pretend sailing boat emphasized the mild hangovers we were feeling. Still that was supposed to be a last fling before my sense of taste and small get screwed.

But the real story here was that there was a group of children from Southampton hospital's cancer ward. They were being taken on a day out by the firemen on the fire engines. They were having a great day out. I don't know their stories but I'm sure, for many of them, it's not good. This is real tragedy, I don't think my situation bears comparison.

They even went on "The Edge", which I didn't fancy - Sam had to go on with Christopher. Fortunately I remembered that my doctor had specifically mentioned that I was not to go on that ride.

Friday, 24 April 2009

Visit to Consultant - get my staging

Visit to hospital today to see Dr Davies again, with Sam. This time at the general, 3rd hospital this week, 4th overall.

Great news, the stage is 1A, the CT scan shows no other sites. So I am at very early stages. Dr Davies is very confident that the treatment will be very successful. He also said that I won't need the "Bone Marrow Biopsy" - didn't like the hidea of that at all. We discuss the possibility of a clinical trial that would involve possibly less treatment. Need to think about it, Sam is not sure, but asks lots of questions. Otherwise the proposed course is 4 months of chemo + 3 weeks radio.

The advice to not to travel to any exoctic countries during treatment, so I won't be going to Ireland this summer.

Plenty of time to chat with the doc. My lumps seem to be a bit harder now, this may be because the swelling has gone down and the numbness has gone. They are now 3cm instead of 6cm when I had the ultrasound.

Chemo sessions to start next Friday.

Thursday, 23 April 2009

CT scan today. Tell the boys

More people to tell today. I joined Paul Curtis's meeting and told them all. Much easier than yesterday. Had to apologise to Anna for not saying anything on Tuesday. She said she had suspected anyway, not too shocked, but she was very supportive. I also had a word directly with Niall & Wai.
Managed to get to talk to James this afternoon, he was the first one to express some shock to start with the news. It was quite relaxed, we talked about his uncle who had a quite severe brain tumor and is clean now.

Went to the Nuffield hospital in Chandlers Ford this afternoon for a CT scan. That's my 4th hospital so far, the first private one. Had some horrible stuff to drink and then they took me in. Had to lie down on the bed. They put in a drip with more of the horrible stuff going into my veins. Then the bed moves in and out of a big doughnut a few times. The whole thing is very quick - no more than 5 minutes. No results today, should find that out tomorrow.

Tell the boys today. Don't give them too much detail, just call it "Hodgkins". Mainly we have a laugh about lossing my hair and having to wear a silly hat. Christopher wants more detail, I think we managed to answer his questions. Matthew just thinks I'll be too scary without a hat. They're just taking it in their stride, not upset at all.

Wednesday, 22 April 2009

Get to tell the team today

Finally got to sit down at the team meeting and tell everyone with them what is happening. This is so good to take a weight off my shoulders. They all know now. I don't have to find a quiet room to make a phone call. They are all a bit shocked I think, but very sympathetic and supportive.

Managed to get a CT scan booked for tomorrow. This was a bit last minute getting sorted, but at least I can get it done before Fridays visit to the consultant.

Went to the pub at luchtime with Stuart, Mark & Graham. Last chance for Stuart & Mark. Nothing said about my news to start with. I made a subtle comment about no lunch tomorrow (due to scan). That got things going and we had a bit of a laugh about hair loss. Then I was able to get everything out. It was great to talk.

Bad day for the company today. We had the big bosses from the two main BLs visiting. They said times were tough - we need to save money. Thirty-nine jobs to go in Southampton. This doesn't get any better. In principle we are safe, but who can tell?

Tuesday, 21 April 2009

Start to get the info out at work

Having told Stuart last week I now got a meeting with Nick (new big boss). Of course he's very supportive. He's agreed to let me tell everybody tomorrow during the group meeting. But I need to get the news out to the test group I'm working with.

Confirmed another appointment for Friday with Dr Davies. Not sorted out a CT scan yet - need to get that before Friday.

Got out of work early to have my tooth filled.

Good chat this evening with Gerard C. Got all the gory detail about his treatment for Hodgkins. Now seems like it's going to be a battle of Learys vs Cronins to see whose had the toughest treatment. He is so positive about it it's amazing, does nothing phase they guy? I've got to keep focused too.

Monday, 20 April 2009

First visit to the Oncologist

Had dentists appointment today first thing. Just a checkup, but I need a filling, book in in for middle of May.

New day, new hospital. This time it's the Royal South Hants, Sam is with me. Nightmare to get to the car park here. In the end we park in a one hour bay on the street outside to get in in time. Still have to wait another hour to get called. Fortunately Sam can go back and get the car back in the hospital car park - there's spaces now.

Meet the doctor - Andrew Davies. Nice guy, has lots of time to explain and talk. He pokes around and checks me out. Pretty confident that it's early stages.

Big shock is the treatment. Mainly chemotherapy to start, looks like I'll feel really bad after that. I might not feel well enough to work. Later it's radiotherapy.

Some talk about going into a clinical trial, this involves using a PET scan to see if the treatment is working, if it is they stop the last dose of Chemo. It would be good to not have to have the extra treament. I think Sam is dubious. We'll have to investigate.

Ask about the filling. The advice is get it done before the chemo. Too much risk of infection and if it flairs up they'll have to stop the chemo to sort it. Went to dentists on way home. They don't have anything in next 2 weeks, but will call if there are any cancellations. They call back later and they can do it tomorrow, good result!

Good chat this evening with Anne and Lynda.

Saturday, 18 April 2009

Mum staying for the weekend

Mum came down on Friday. That was very good timing. It's a good chance to go into all the detail and discuss it properly. She is quite okay with the situation, not really upset at all.

Have a lot of chat about how my dad handled things after he was diagnosed with prostate cancer. He didn't want to talk at all - mum didn't even know everything. I'm being very open - hope I'm not going too far.

Wednesday, 15 April 2009

Diagnosis Day

On way to hospital. I think it's not really serious, this is just going to turn out to be an infection isn't it? I've probably just been getting to worked up.

See surgeon quite quickly - Mr Royle this time. Straight to the point - it's true. It's Hodgkins Lymphoma. He hasn't got much more to say about it, says it's quite treatable. He's made an appointment for Monday with Dr Davies the Oncologist. The answer to most questions is you'll find out on Monday. Otherwise I just ask about the operation wound. He's quite happy it's healing well. I can get back to normal, get it wet, do what I like. Zapcat next week.

Went straight home afterwards, can't really go back with this on my mind. Sent a text to Sam to say I was here, she's out with the boys. She phoned back later and asked how it went, I said it was all fine I'd explain it all later -I can't tell her on the phone. When she gets back home I have to tell her the full news, not even straight away I have to wait until the boys disappear. She's very upset, of course, this is a real shock. I have to keep a brave face so that she does break down.

Do some homework. Looks like Hodgkins is not as bad as it could be - better than NHL:

https://www.lymphomas.org.uk/

Brenda is texting lke mad (from Italy) to find out how it went. So I have to get the phone out. But I have to speak to my mum first. I also need to brief Lynda because I know she will get grilled.
Spend most of the evening telling the family - no secrets now. We're no longer speaking in code. I do feel a lot better about this.

Today is 20th anniversary of the Hillsborough disaster. These guys didn't stand a chance - hardly knew what was happening. How can I feel it's not fair on me? Bad things happen to good people all the time. We just have to do what's in our power to make it right. I can get through this.

Monday, 13 April 2009

Easter - Anne and family visiting

Had all the Roberts here to stay for Easter.
We all went for a great walk in the New Forest, beautiful day. The boys loved having their cousins here, as always. Still making subtle comments about the op results, nothing too specific.

Wednesday, 8 April 2009

No appointment yet

Phone hospital at number given for operation appointment (Elaine). She said it wasn’t her department, but she would check, nothing in system. She phoned back in 1 hour to say that she had asked them to book it for me – very helpful. A bit later I got a call confirming appointment for next Wednesday 2:50pm.

Friday, 3 April 2009

Operation Day

Up early today. Got to get breakfast first. Sam, as usual in hurry, kicks me out to get breakfast before 7.00am. Finish breakfast 7.07am. Good game with boys trying to sneak more food. Back to shower with scrub last time before hospital, make the most of it, might not shower for a few days. Might be less fun in the bath. Song on the radio, this is great:
http://www.seeklyrics.com/lyrics/The-Monkees/Daydream-Believer.html

Take boys to school. Threaten to stop at Tesco to get a bite to eat. They run off, no worries. Don’t wish me well for op, which is good, they shouldn’t worry at that age. Back home, see Sam outside talking to neighbour at No1. Not met her before so I go over as well. Got some spare time anyway. Back in house. Do some work for 1 hour, the phone conference about PNX5120 – looks like they have quite a few actions for me. These guys don’t know why I’m at home, but I leave call before the end of meeting. Get together final bits and off to hospital. Sam drives her car, worried about parking. I guide her a little bit. No bother with the parking, wide empty space. Show her the way to ward – I’m expert in this hospital.

Up at ward 11:20, good timing. They are expecting me thanks, my name is on the board. Go to waiting room – it’s full - this might take some time! Say to Sam she should go if she wants to, but she doesn’t. She’s probably more anxious than me. She wants to feel involved. Don’t want to push her away, it’s fine for her to stay.

11:45 approx called by nurse - Sandy. This is good and quick - great. Check blood pressure, temperature. Few questions about what’s going on. Sam wants to know when I’ll be out.

12:15 See anesthetist – Jon Millar. Sam is in too. He says I’m first on list, so I should be out quickly.

1:00 Meet consultant Russell Curtress – with Sam. He says he will take as much as is easy to get out. Question from Sam about how much they will take – won’t they have to take it all out eventually anyway? He says not necessarily depends on what it is. If it’s an infection – antibiotics. If it’s lymphoma – lymphoma treatment – careful avoidance of subtle reference to the C word here, we all know what he’s talking about. Checks blood results – says they look normal. Not yet checked X-ray. He has a look at X-ray at the nurses’ station – no problems with that.

1:10 Sandy gives me pot full of pills

1:20 Sandy calls me through to get changed into gown and put on my dressing gown and slippers. Passes me some stockings – says “for after”. I assume I don’t need them until after the op, so put them in my bag.

1:30 walk to operating theatre. Just before we get there Sandy asks if I have the stockings on. I said no, misunderstanding, I thought she said they were for after. She thinks it’s okay as I’m a day patient. Checks with nurse at theatre, they don’t have any, but say it won’t be a problem. 1:40 Round on trolley to theatre. I’m told off for holding door as nurse seemed to have trouble leaning over me. Into outside room, lots of stickers on walls and ceiling – Thomas, Dora, Buzz Lightyear, clearly this is used by children. See Jon again, he puts on oxygen mask. Nurse tries to get probes to work, stick them on, but no sound from monitor. Tries swapping over wires, get new wires, no luck. I hope this doesn’t mean there is a delay, maybe they have to find another machine, or wait until one is free from another theatre – don’t want this. Eventually it works, I think one probe was connected wrong, that’s a relief. Then they seem to have a problem getting a vein up in my hand to put in anaesthetic – just like at the blood donors’. Get it in the end. The stuff goes in my hand, they say it will feel cold. It does feel cold, horrible, feels like it’s swelling up my arm, I don’t know how much of this I can bear, I might want to scream.

1:55 go to sleep

3:10 Wake up. Can’t remember anything about counting, must have gone out quickly. Nurse next to me says that I had the whole lump removed, I said that’s great, but I’m still tried can I just sleep.

3:30 back at ward still drowsey. Just have some water

4:00 Sam calls back to ward. Get a message that Christopher has lost his tooth.

4:30 Felling good, out of bed, get dressed. As I’m getting dressed I have to kneel down to tie my shoes. But my knees buckle because of the ache and I nearly topple over. Helen thinks I’m fainting – I have to re-assure her. Helen calls Sam to say I can go home

5:00 Lindy tries to get blood out for sample. She has trouble pumping up my left arm sticks needle in but fails. Has to go for other arm – this works thankfully. But now I have two extra dressings in my arms.

5:15 Mr Curtress comes round to see me. Everything went well, he took out the main lump, also another big one and some small ones. But still a few small ones that he left behind. Probably see him again week after next – Wednesday, should be after Easter. Not too long to wait.

5:30 Helen clears up, takes out needle, gives me

5:45 Helen asks if I can go to waiting room, as they need bed, no problem I’m sitting in chair. Sam turns up at that moment so I can go anyway.

6:10 Back home Spoke to mum this evening. Told her that I will go for appointment later. Should find out what it is. I’ve probably not admitted up to now that we don’t know what it is. Probably getting her suspicions up. Spoke to Anne this evening. Sometimes we talk about nothing for ages. She talked about a friend at school whose wife is “2 weeks ahead of me”. She was diagnosed with stage 2 lymphona, but not yet spread. She has a very good chance of a complete recovery – 98% chance that it won’t come back same as if she had never had it. I didn’t take the bait, but it’s clear we both know what’s going on. I’m not really ready to come clean.

Late evening Midnight. Can’t get to sleep. Too much going round my head. Need to do something. Start to write this stuff.