Some good news

I am just back from hospital - with two pieces of good news. My hickman line is clear and working and ready to go (it's also a lot less painful) and... the results from last Thursday's MRI scan confirm that the legion on my liver is a cyst (ie. non-cancerous).

Chemotherapy starts tomorrow as planned.

Pulling at the heart strings

The noisy machine was ok. Not as easy as last time before the op, where I had a few quick scans feet first up to my waist. This time I was fully immersed head-first for 30 minutes with yet another tap in my arm so that 'contrast' could be remotely administered. The senior radiographer was very re-assuring, saying she had personally tested all the scans herself. This surprised me until I learnt that you can have as much MR as you like without detrimental effects. This really helped to relax me and we kept up a good dialogue on the intercom between scans.

I still don't have the results of this scan - but I have been hugely reassured by a few friends who I have spoken to on the phone - one a doctor herself who sent these lovely flowers. With the confidence of others building my own conviction, I somehow know that the cyst will be confirmed and I have long since stopped worrying about this.

Yesterday, I visited the RUH to have a "long-line" inserted in readiness for chemo. Sarah has taken the week off work and has been a rock for this somewhat daunting week. I am not very brave and the thought of having some pipework shoved into my jugular to dangle into the superior vena cava feeding the heart seemed to occupy many an idle thought over the weekend. Further assurance from the sunflower doctor, "You've already been through much worse...", got me into the right frame of mind and with some trepidation I approached the procedure with a can-do attitude. The procedure is done under a local anaesthetic so I was able to witness the full fear of a theatre fitted out with ultrasound and x-ray location and a plethora of monitor screens to locate the vein and guide the doctor to the right location above my ticker. The doctor assured me that he had a cupboard full of local and I wouldn't feel a thing. The nurse was re-assuring and procedure was completed within 45 minutes. Most of the pain resulted from the  injections (I still hate needles). There was quite a bit of pushing and shoving, but this was disconcerting rather than painful. I was helped up from the operating table and was able to see the line looping over my collar bone and dangling in the vein on the x-ray monitor; almost fascinating, as I began to relax safe in the knowledge that it was all over.

Sarah was waiting outside (they wouldn't let her in: a call beyond duty to even ask in my opinion) and together we returned to the day case ward - me in my chariot, Sarah running to keep up with the porter who had obviously watched the Japanese grand prix over the weekend. I had a cup of tea and waited until we were cleared to leave during which time I became aware of the local anaesthetic deserting me. As we walked through the hospital, every turn of my head or minor movement of my arm translated into a weird pulling sensation in my neck and a dragging sensation somewhere inside my chest. We stopped at the pharmacy to get some paracetamol for the journey home.

After a weekend of near normality - I haven't felt so good in weeks - I now feel properly like a patient again: resting rather than doing, constant modest pain, strange pulling sensations, holding myself in fear of triggering worse and yet more non-organic body parts. I count down the hours to my next dose of pain killer as I read more emails and texts of support (thanks) and think about getting some news on here. It's ironic to think that with such a severe diagnosis, I have yet to feel any pain as a result of the cancer itself. All discomfort can be attributed to the treatment and, assuming the treatment is successful, this will be the case over the coming months. Of course, I'm lucky - twenty years ago this would have gone undetected until very painful and then ....

Noisy machine

At my consultation with the oncologist last week, there was mention of a 6mm legion on the liver. She was pretty confident that this is a cyst and is apparently quite common on the liver and resolved to check further. We then got into the horrors of chemotherapy and this whole procedure dominated my mind. In fact the legion didn't even get a mention in my blog that day.

I had a call from the hospital yesterday: They want to do a further MRI scan of the liver to check the legion - can I come tomorrow (Thursday)? I'm assured that there is nothing to worry about and they just want to be sure.

But it was not a good night - Sarah and I locked horns over some tiny stuff and it is now clear how difficult it is to follow the not to worry advise. However, this morning, I am feeling positive. I have had a couple of nice email exchanges with a couple of good friends and I am firmly living in the now and am mindful that today's test is not to be worried about. The future outcome can wait for another day, but for now....

It'll be a bit rhhhr!-rhhhr!-rhhhr!-rhhhr!-rhhhr! .... rahr!-rahr!-rahr!-rahr!-rahr!-rahr! .... rhhhr!-rhhhr!-rhhhr!-rhhhr!-rhhhr! once I have entrusted my body to the donut shaped machine which resembles a weird combination of space technology and medical white, cleanliness. Bloody noisy, but at least it doesn't hurt. I don't think I'll bother taking a CD in with me this time - the headphones are too crap and it's far too noisy for your favourite tunez to be of any relaxation benefit at all.

It's reassuring to remind oneself - all I have to deal with is today.

--

I have now starting catching up on some more notes from hospital. I know it's difficult to find new stuff that's not at the top of the blog, but if you want to read up more hospital stuff, I suggest you click August from the right hand column (Blog Archive) and read up from the bottom, starting from where you left off.

Another man's poison

I had a call from my excellent GP yesterday. He wanted to decode the medical speak in the letter from the consultant and re-assured me that I will cope well with the chemo and not to be too concerned by the astounding list of side effects.

I'm going to have a adjuvant chemotherapy using a combination of Oxaliplatin and 5FU every two weeks for 6 months. Both drugs will be delivered into a main vein close to my heart. On Monday, I will be in RUH to have a Hickman line inserted into my chest to allow this to happen. I get to keep this for the whole 6 months - what a treat! this would be a real boon for drug addicts! The Oxaliplatin is infused during a hospital visit whilst the 5FU is infused over a 48 hours via a portable infusion pump. I really don't relish this level of intervention, but the potential complications are the biggest challenge to come to terms with...

The common side effects include:

• Sore mouth and ulcers ("get a soft toothbrush")
• Taste changes
• Diarrhoea
• (5FU) Gritty eyes and blurred vision
• (5FU) Skin discolouration
• Lowered resistance to infection (it hammers the bone marrow - and therefore reduces white cells)
• Bruising and bleeding (platelet count is reduced)
• Anaemia (red cells are also reduced - all in all not good for the blood)
• Tiredness and feeling weak
• (Oxaliplatin) Numbness and tingling in hands, feet, neck and or throat (often triggered by cold)
• Nausea and vomiting (controlled by anti-emetics)

Less common side effects:

• Hair loss (I'm already follically challenged -  so I quite like to trade this one for, say... susceptibility to infection)
• (5FU) Nail damage
• Increased skin sensitivity to sun
• Itchy rashes (controlled by drugs)
• Soreness of palms and soles of feet
• Increased production of tears (I think this happens as soon as you read the list of side effects!)
• (Oxaliplatin) Difficulty swallowing and breathing
• (Oxaliplatin) Allergic reaction

Nasty stuff. It's a shame that this treatment only reduces your chances of re-occurrence of the cancer by a mere 15%. If it was more like 40% - I could put up with crying a lot and not being able to breathe for a bit! So far as I can tell the treatment hasn't changed significantly in 15 years (when my father was diagnosed with colon cancer) and I have to say, it feels about as advanced as blood letting or leaches!

Yet... I don't have much choice. I also learnt from the oncology consultation that my histology results are a little worse than I had been given to believe previously:

• 1/11 lymph nodes (previously heard 1/18) tested positive for cancer -- indicates spreading
• Cancer cells in tumor are 'poorly differentiated'. Well differentiated cells look more like normally developing cells (ie. cell specific function is clearly identified -- liver cells look different to colon cells). Cancer cells are not fully differentiated - and this indicates a more advanced/aggressive cancer.

The advice from two consultants and the GP is - throw everything at it now.

Better do that then!

Oncology consultation

I had an appointment with the Oncologist this afternoon. It was a bit grim, but I have already "vented" to Alan (from work), who had the misfortune to call in this evening plus a few members of my close family by phone. I'll take a little time reading up and reflecting a little on the information I received today and follow-up with some more info when I've fully absorbed it.  In the meantime - here's something a little more light-hearted that I was musing on in the wee small hours last night....

New baby!

Well ok not really a new baby - but plenty of sleepless nights - Sarah says it's like having a new baby. Either I'm up to pee (because my bladder is still bruised), or for the last couple of nights, because there's a tethered hot air balloon on my stomach threatening to cast the duvet on the floor. It's so damn difficult getting the diet right to keep my front bottom happy. The slightest grain of bran or nicely cooked slice of carrot and your stomach contents are through the stoma and sloshing around in the bag before you can say two bob bits. This causes extreme tiredness - nothing gets absorbed. At the other extreme, a few peanuts or a slice of raw vegetable ... see Obstruction at RUH. Back to last night - quite a few things seem to cause wind: a baked bean, all sorts of vegetables, Guinness??? [I still can't stomach my favourite tipples - but the diet guide from hospital mentioned the black stuff, and heh!... beautiful creamy loveliness!]

The upshot is the balloon has to be deflated, this involves fishing around in the dark for my glasses, creeping off to the bathroom and fiddling with my appliance. And the baby references don't end there - for anyone who has experienced parenthood properly (I'm talking ladies and new men) - the similarities are uncanny: consistency, smell, colour, volume. And like the baby, somehow - no matter how careful - you end up getting it somewhere you don't want to.... and like the new parent - somehow you accept this??!! Once the pressure is relieved - wow front bottom is free! unleashed! back into action. How many parents recall having just sealed that last sticky tape only to find it's time to start all over.

Creeping back to the bedroom, the creak of the door, that slightly loose floorboard is more than enough to re-awaken my wonderful, long suffering, care assistant. She falls asleep pretty quickly, but for me burrp! phuut! pweep! burble! keeps me awake a while longer while I reminisce on those long forgotten nights when Henry and Ben were babes and I used to show up to work like something from the land of the living dead. Now it's Sarah's turn.

I apologise for the somewhat direct nature of tonight's post - which was stimulated in the knowledge that my sensitive natured sister-in-law will be reading for the first time and she wondered if she would get a mention. Hi Jane! thanks for all your support.

Oncology appointment tomorrow

I have an appointment with the oncologist tomorrow. I've just been writing down a long list of questions to ask when I get there, which seems to be a good way of making sure I don't get home and think - "ahhh! should have asked about ..." Unfortunately, it makes me realise how little I know about chemotherapy, even after watching the toll it took on my Dad 15 years ago when he was beaten by the same disease. No doubt things have changed significantly since then and I look forward to reporting back after things have been demystified a little.

Two celebrity deaths hit the news today: Patrick Swayze and Keith Floyd, both suffering from cancer. Floyd was carried out by a heart attack, rather than colon cancer which was diagnoses in June. Swayze had pancreatic cancer which is one of the most virulent and late detected cancers - there are very few survivors. He makes some pretty gloomy comments about chemotherapy which makes one sit up and listen to the alternative treatments available. It's not the easiest decision to make, especially when you consider what a blunt instrument chemotherapy is: essentially a non-specific cell murderer which happens to effect the most rapidly multiplying cells first - like hair, digestive tract,... and cancer.

It's daunting - but I am not disheartened and still hold the firm knowledge (that's stronger than a belief -- right?) that I will get through. I have a steady stream of friends and family who visit and am still receiving good wishes and cards - even 3 weeks on. Many, many thanks for that - I cannot express strongly enough how much difference this makes - I am firmly convinced of the power of collective thought.

I'm back-filling quite a lot of notes from the journal I kept when I was in hospital so check back to the earlier dates for more up to date info -- you may find it a little lighter than tonight's ramblings.

Histology results

Big day - a visit to Bath Clinic to see the consultant to follow-up on the histology results from the bits they cut out of me. On the plus side, Mr. T thinks I am doing well (ignoring Monday's little hick-up). All 5 wounds are healing well and I have full control of my vital faculties (there's quite a bit of risk involved in such major abdominal surgery).

Mr. T took out the tumour and 18 lymph nodes (basically the tissue surrounding the organ). The nodes act as a kind of filter and if the cancer has spread the lymph nodes get it first. 4 or more is considered to be "advanced" and 3 or less is considered early. Obviously the best outcome is 0 positive nodes (an "A*"). I'd never been a top scholar, but often got by above average: I scored 1 (an "A"). That's the good news. The bad news is that even 1 means that there has been some spread so oncology treatment is strongly advised, probably chemotherapy for a period of 6 months.

In practice this could mean that I will be out of work longer, but I still hope to start working again within 3 months. I'll need to build this up slowly. There will be some weeks when I won't be able to work due to a chemo cycle. When the chemo is complete I'll need a 'reversal' operation to restore the original route of my colon at which point I can change my moniker. It's all a little vague at the moment and I'll know more when I see the oncologist in the next couple of weeks.

Naturally, I don't relish the thought of poisoning my body, but in the grand scheme of things (i.e. living) it'll be fine and I'll do my best to take it in my stride. I guess it's just going to take a little more time....

Obstruction at Royal United Hospital

(...) Woke at 1AM with major cramp pain. Got up, shifted about a bit and took some paracetamol to try and relieve pain. Didn't help much. Went back to bed to toss and turn and generally wake Sarah up (unintentionally). At 6AM took some more paracetamol, still no better.

Bag empty - tummy bum surprisingly quiet after all I'd eaten yesterday. This was clearly bad news. Sarah phoned the consultant's secretary who advised we should go to the RUH where Mr. T would be operating today. It's a long journey into hospital in Sas' bouncy mini which shakes every internal stitch, on top of a background of constant, acute guts-ache pain.

I think I may have over-cooked it with the fibre and fresh veggies yesterday and this is definitely not a price worth paying.

It's unbelievable how much it costs you in parking before you can access the free for all services of the NHS. According to today's Times newspaper - hospital trusts collect £600M in parking fees annually. I managed to avoid the optional fees for watching TV since watching the second hand on the wall clock is infinitely more stimulating than daytime TV. Do you know how much it costs your loved ones to dial-in to the bedside phone -- 49p per minute. What will they think of next - admission fees for visitors?

I hate being in hospital - it either seems to be a battle to get attention when you're screaming with pain or a constant stream of obs, drug rounds and cuppa's when you've just managed to get to sleep after being awake all night. Worse of all, I'm not very brave and hate needles. So when Charlotte, a young doctor arrives (this will be my 2nd year med school niece Jo in a few years time) to take blood and insert a cannula into my left hand - suddenly I'm soaked with sweat and my vision is starting to go a bit monochrome. Sarah spots this, slaps me about a bit and gets me on the heavy breathing and somehow I manage to stay on the unfeasibly narrow bed -- thank God she's here (again!).

I guess it didn't help to not know what's in front of me. No word from Mr. T, but the young doctor has instructions to take blood, get x-rays and admit me. What! Why? Can't somebody just jiggle me around a bit and unkink the hose? Apparently not: a serious obstruction usually means surgery. Ahhh!

Sarah nips off to shove a couple of fivers into the car-park-thief-machine and while she's gone Dave arrives. Without doubt the chirpiest person I have met today. He announces that we are off to X-ray and goes looking for a wheelchair (just to remind me that I'm still a sickboy). I thought he was a porter, but apparently he's the radiographer - all the porters have disappeared. He tells me that 7 years ago he was in the RUH for 8 weeks following a serious car accident. He was so affected by the care he was given which set him on the road to a full recovery, he went back to school - took some exams and then went to college, now he just loves his job (and life judging by his demeanor). A great lesson to those of us with seemingly bleak conditions such as colon cancer - a good example of how to make something good out of a bad situation. I wonder what will become my own story?

The X-ray is good fun (because of Dave) - he shows me all the kit and even agrees to let me have a look at the digital x-rays on his monitor, provided I agree not to ask him for a diagnosis. Most impressive shots of my pelvis and spine - which looks a bit twisty (not even a contender for today's most distorted spine, say's Dave). If only I had a USB key with me - they would be up here!

I'm admitted to a side ward with two other beds containing two sleeping companions. Nil-by-mouth with a drip to keep me wet and 30ml of water per hour - just in case I need to go to theatre. Sas leaves to collect the kids and attend a school meeting while I settle in to watch the clock. Alone, I become aware of the pain subsiding, or more accurately, coming in waves - like contractions (I guess! but getting further apart). Not regular, but every 3-6 minutes and then it lasts just 20-30 seconds. I become intimately familiar with the clock - the type face of the numerals; the jiggle action of the second hand; the make ... bloody hell it's 15 minutes slow! no matter, the minute hand is all I need. I really don't want surgery - then it occurs that I can fix this myself. I relax, breath deeply, take in my surroundings and focus on the 'contractions'. This must be peristalsis against the obstruction. I think of flowing, like a river, and as I relax I am aware of a few bubbles at my stoma. After a further 30 minutes, the pain is almost gone and I have a full bag! I'm so excited about this I tell the nurse but, of course, she isn't impressed: "You'll see the consultant after five". This continues for the next couple of hours and I know that I am in the clear.

Mr. T's registrar, Chris arrives about 6pm with an entourage of students in tow (which I ignore). He's a nice guy and very helpful - he confirms my suspicions and confirms that I can go home, but suggests that I try a little food before I go and hang on a hour or so to see how that works. I have a piece of dry white toast and a cup of tea - one of the best in years. It's all in the bag within 15 minutes. Once again, I become aware of that familiar feeling of exhaustion. Aside from the toast, which clearly isn't getting absorbed, I haven't eaten in 24 hours. But I am so relieved - at least I know the obstruction is clear.

Sas and the kids arrive just after 8pm - it's great to see them, I'm so ready to go home. What a day, all down to a carrot stick. But hey? What a relief to be discharged.

Over-enthusiastic appetite

It's Sunday and it feels like the end of a successful first week at home. I'm moving about easily, walking a couple of hundred yards each day and have cut down the pain-killers to a minimum. Following the hospital hunger-strike week, I'm doing well with my food and am getting to grips with the habits of gut V2.0. I'm starting to regain some weight and now check in at 10 stone 4 pounds - up 4 pounds from leaving hospital but still a whole stone less than when I left work. I would have been quite delighted with this a few months, but it's not enough to sustain me through chemo or further operations -- beer might help (it certainly has in the past). The only trouble is the thought and taste of alcohol is quite abhorrent to me at the moment.

Had a good breakfast with a modicum of fibre (....!)

Before being diagnosed I made the fateful mistake of decorating the lounge. We gave the good quality but worn suite to a local charity and hung a dust sheet across the small end to form a small lounge with the remaining furniture a telly and a futon -- just in case the job took a little longer than advertised! I got as far as stripping it bare, re-wiring, repairing the smokey chimney, removing the nasty false coving and re-plastering the resulting holes and wire chases. The upshot is there is nowhere to sit comfortably downstairs.

I decided it would be nice to escape 4 walls and have a look for a comfy chair to recuperate in. I'd scanned t'internet and decided that the way to go was Norwegian quality in the form of an Ekornes Stressless recliner: stylish, extremely comfy, expensive and (hopefully) long lasting (we got 18 years out of the last suite!). There's a dealer in Shepton Mallet and that seemed like an achievable distance to be jiggled provided that we went in my car rather than Sarah's bone shaker.

Next step is to pack the emergency stoma care kit - this reminds me of packing the car to take the newly born children out for the first time - there are other similarities too - that I won't go into. Suffice to say - that a certain degree of liberty seems to have been removed and it will be quite a while before I attend another music festival.

We found what we wanted -- but there's a 10 week delivery time. I guess I'll have to get used to sitting on the floor! At least it will encourage me to take an afternoon lie down on the bed.

Hey - we're out. It's lunchtime. We can have Sunday lunch (....!). Our choice is dictated by proximity to where we are standing and the Shrubbery Bistro/Hotel provides a typically British only-just-about-adequate roast dinner.

Definitely ready for home after this major excursion.

I crash out on the bed -- while Sarah, desperate to escape from her loving family, goes off for a walk. Could this be a result from the helpful driving tips and direction advise from the non-driver in the passenger seat?

Sarah still not back and the (occasionally) delightful kids decide to make tea - while I take call from a well-wisher. I'm on the phone for ages and when I'm done - there's a complete spread including wonky-cut bread, cheese, crisps, hummus and crudities. The peppers and carrots have been peeled, cut an arranged fan-style on a plate with no severed fingers or blood-stains in evidence. I'm mighty impressed and it's too much to resist - I love hummus - surely a couple of carrots sticks can't hurt? (...!)