Scars and Consolations

Last Tuesday, I checked into the specialist liver unit of the Basingstoke and North Hampshire hospital. They prepped me for the operation, warning me that they expected to remove around 60% of my liver, which would be survivable but might require months of careful eating and drinking as it regenerates.

Fortunately my surgeon, Mr Myrddin Rees, came around later in the evening, and confirmed that we were NOT expecting to remove so much liver. There were three lesions, one on the left of the liver and two smaller lesions on the right, and he expected to remove them all with wedge resections - literally removing a wedge shaped portion of liver to remove the nasty part.

The next morning I was taken down, operated on, then spent 24 - 30 hours in recovery - sleeping for short periods between having mad morphine dreams and trying to do deep breathing exercises. Finally I was taken back to a private ward room where I was told (now that I would actually remember things I was told !) that the operation was a success and only 10% of my liver had been removed. Recovery was swift - almost too swift, I felt great and ready to leave by Saturday, once all the tubes and drains into my belly were removed.

But I stayed one more night until Sunday - which was the most painful day of the recovery ! With the anaesthetic lines removed, the pains in my belly started up, reminding me more of my bowel operation when the pain control had not been as good. But I was ready to leave and go stay at my parents, where at least the pain was tempered with mothering and care from both Mimi and my folks. With the dressing removed, I could now see the scar on my belly - a large 1 foot scar starting from the top of my belly (where my bowel scar starts) and heading down and across to the side of my belly. Along with the bowel operation scar, I makes a large number 7 shape :)

Three days at home and things are getting better - slowly. Main pain comes from sleeping - it's hard to find a comfortable position and moving into or out of a lying position is quite a chore. But the days are getting better, I'm getting looked after, and paracetamol is a highly underrated pain relief drug - it really does take the sharp edge off !

Heavy times call for mighty deeds

One more quick blog post from me before I head in. To revive the past spirit of this blog, I'm going to talk about my weight again ! Since stopping the chemo drugs and continuing my sedantary lifestyle, I've managed to slowly gain a stone in weight, putting me back to where I'd reached after the running. Seemed that those drugs were using up a lot of stored energy to stop me actually gaining weight.

Not a big issue, but I am keen to not come out of my treatment and back into the old sedentary Ben mode. So I've made a positive step and signed up for the JP Morgan Chase Challenge - a 3.5 mile run (~5.6km) for bankers hosted in Battersea Park mid-July. This gives me a full month to recover from surgery and another month to get moving again before the event. Being a non-professional run, a lot of people end up walking much of it - which might be the case for me, but even that will be a good healthy start to post-treatment 2009 (well, actually I'll probably be on the last few days of chemo then, so almost post-treatment !)

All of which brings me around to.... sponsership ! This year, they have promoted sponsership, and perhaps unsurprisingly, I have chosen Macmillan Cancer Care as my chosen charity. This isn't a big race, it's more an important first post-treatment step for me, but if anyone wants to make a modest donation and sponser me, that would really make the struggle feel that much more worth while.

Until then, I'm off to spend some time with friends and family near my parents home, and then onto hospital on Tuesday. It's been a great week in the run up, lots of fun times, and I made a big fish pie the other day - becoming a bit of a favorite reciepe of mine. Love to all, Ben

One week to go...

So I come into the last week before surgery starts... and what a week it is ! Cinema, dinner, karaoke, gaming, seeing friends and family - everything a perfect week should have :)

A few people mentioned visiting, so I thought I'd put some details here. I am going into the Basingstoke and North Hampshire hospital on Tuesday for surgery on Wednesday morning. After that I expect to stay in for 6 more days. If you would like to visit, please arrange all the journey details yourself, but do drop Mimi a quick text to let her know what time you are planning to come as she is managing vistors to prevent too many people coming down at once.

That said, it's a way out of town, and I look forward to seeing everyone during / after my recovery period of 4-6 weeks (if not this week !) so please don't feel obliged to come down. Oh, and if you do come, please don't bring any books - I am still well provided with literature after my previous hospital stay !!! Grapes are always welcomed though - seedless ones, mind you ;)

Getting more and more nervous about the uncoming stay - not been sleeping well for a number of nights now, which I suspect is due to anxiety or bottled up emotion (so typically British) or something like that. Ah well, best focus on the week of fun ahead rather than worrying unneccasary worrying !

Easter surgery

So I saw the specialist just over a week ago, and surgery is confirmed for the morning of Wednesday, 15th April at Basingstoke District Hospital. The operation will be a "wedge resection", which is essentially removing a wedge of liver from one lobe, to take out the largest and only 100% confirmed lesion. The operation won't be keyhole, but this will give the surgeon a chance to examine the other two "blurry" points of my scans to confirm if they are tumours or simply scar tissue, hopefully for the first time giving us a clear picture of just what we are dealing with in the liver. And, of course, hopefully removing all last traces of the cancer from my body.

I expect to be in hospital for around 6 days, and then will be resting up at my parents house for a couple of weeks following. Full recovery is expected around 6 weeks after the operation, so I imagine I will be returning to Chemo (and work !) at the start of June for 6 more weeks (Chemo, that is - hopefully work will carry on quite a bit longer than that, despite the current economic climate). Hospital is a bit of a trek from London, so I imagine visitors might only come at the weekend. If you let myself know in advance, that I can send travel information about how to get there. Otherwise contact Mimi when I'm in hospital, just so we don't get too many people trying to come at a one time.

So that's the facts. Emotionally I'm obviously a little scared, but reassured by the surgeon who seems highly competent and comes recommended as one of the countries finest liver surgeons. Also reassured by the fact it all happens whilst I'm unconscious too ! It's just tough putting your life totally in other peoples' hands, elevating them temporarily to the status of gods. I'm such a control freak, so I guess there is quite a clash there too. So focusing on the good aspects of it all - a clear(er) liver, being looked after by Mimi and my parents and one more step to the end of all my treatment. Also focusing, as always, on the small practicalities - such as at which point I stop being paid full salary from work (quite soon !) and budgeting accordingly (not hard, won't be going out too much !) - more cheap nights in are needed ! Board gaming anyone ;)

A knife in the road

The sixth cycle comes to an end. My spots are flaring up again - but they come and go, so hopefully will not be too painful for too long. Two more cycles to go now, next one should be starting this Monday. But it's not.

Mimi and I took a couple of days out in the country, staying in the Cotswolds. This was a much needed break, one we would of perhaps liked to have lasted a little longer, but we need to save holiday so we might have a trip to Australia this year. This was to get away from it all, but instead acted as a nice place to receive the next change of my treatment plan.

The only reliable thing in cancer treatment is "don't plan on what you know, as it's probably going to change by next month". And here we have quite a big change of direction. The second surgeon I have sent my scans to has recommended surgery. I have not had a proper consultation with him - that is scheduled for the end of next week - but his recommendation for surgery is definite enough that he has proposed I don't have the chemo on Monday, so that the one drug-free month can start that much sooner.

All I know is he thinks that operation would be quite small, and with that in mind it would be worth going ahead with some surgery now. This tallies with the "conventional wisdom" around secondary cancers; cut them out and apply chemo to ensure everything is caught. And so it's the path I think I am best taking at this stage, certainly until I have had a chance for a proper consultation to discuss why he thinks surgery is best, compared to the initial descision made by the other liver surgeon.

At the end of the day, with little hard medical fact backing up either approach, I get the feeling the descision between the options presented is being left to me. This is, of course, somewhat absurd - 9 months ago all I knew about cancer was it affected old people and smokers and not 31 year-old males (yes, yes, 32 years old now). And whilst I have learnt a lot since then, it's still a bad idea for me to be making this decision. I understand the final call is still with me, I'm not completely impotant in this decision making process, but on a choice like this I really need to hear how these options have been reached and how each recommendation is backed.

Fortunaltey, I am seeing my Oncologist tomorrow and the new surgeon next Friday, so plenty of chances to ask questions and get a gauge of confidence on the whole decision. If this surgery goes ahead, I suspect it will most likely happen at the start of April and be based in Basingstoke hospital (yes, yes, I know, bloody miles away). Confirmation of everything coming in a week or two. Until then, I'm just trying to manage these darn spots on my head.

The Sixth Cycle

It's been a while since I blogged - partly as lots of things have happened, and partly as nothing has changed.

It was my birthday a couple of weeks ago, and I had a really good party with lots of mates (only a small handful who I managed to actually talk to) and got lots of love sent my way. This was awesome, and really helped pick up my spirits.

My spirits were down at that point as the spots were back ! The nasty things that riddled the top part of my body (including all over my poor head) had come back almost as bad as over xmas, Which led to lots of scratching, pain and pretty bad sleeping patterns. I was looking forward to blogging now about how they had retreated, and in the last few days they were down to "cosmetically annoying" but I can shower and sleep with a relative lack of discomfort. But already, after my injection a week ago, I feel them coming back once more - I guess they will come and go throughout my treatment - but they are certainly one of the least pleasent parts about all of this.

But not long to go (only just over 2 months ?!?) - today is the start of the sixth cycle, almost anniversary worthy in itself. Which means another week on the steroids (lack of sleep / feeling wired) and not being able to touch anything under room temperature. Fun. Only three more weeks like this to go though.

Otherwise it's a case of soldiering on. There is talk about me going to get a second opinion on the scans I've had with another liver surgeon, just to be sure that avoiding surgery is the right thing to try now. It's not the common approach to curing this form of cancer, so my oncologist wants to be sure we've made the right choice.

Right, time to get my jumper(s) on and head to the clinic for more drugs ! Yey !