I mean the hospital that I was in was very new, very shiny, very clean. It felt a nice environment to be in. I felt it added if you like to my sort of confidence about everything that was being done. And it was, and it’s also, and it’s a building very close to where I work, so I was kind of sort of familiar with it from that sense. So it didn’t feel all that alien and it was a reassuring sort of environment in terms of its cleanliness and bright and colourful.

You say cleanliness, were the loos fairly clean?

I was fortunate for whatever reason, I was in a room which had its own sort of dedicated loo, and I mean that was cleaned sufficiently. I don’t, I don’t have any recollection of being unhappy with the cleanliness there.

So you were lucky enough to have your own room?

Yes.

But this was National Health Service?

Yes that’s correct.

Oh there’s one thing I want to mention, which was something that actually I wasn’t entirely prepared for, so this maybe goes against what I was saying earlier. During the surgery, this is the low anterior resection, they did warn me in advance that they’d be poking around near the prostate and other bit’s and bobs and you know there were some risks of nerve damage which weren’t you know, well you had to just cross your fingers and hope. And hopefully, thankfully for me I didn’t experience any serious problems. But short term there was obviously some sort of bruising and some inflammation and some swelling in that part of the world, which meant that I was, I had a urinary catheter in for the entire time that I was in hospital. They tried removing that, well they did remove it twice during my six day admission, and I wasn’t able to pee either time, and actually that was probably the most unpleasant experience during that six days.

The first time I was rather naive and thought if I drank a lot I, it would actually help me to pee. I think it had the, exactly the opposite effect, so I had taken on too much liquid and it took them a while to find a doctor who was competent to re-catheterise me, so I had an extremely large bladder for a while, waiting for that. And that was uncomfortable and unpleasant.

We tried it a second time, basically managed slightly better, but I, sorry the, sort of managed from the point of view of having the right people available at the right time, I had to be re-catheterised because again I couldn’t pee. But because everything else was fine, and you can be sent home with a urinary catheter, I was sent home.

I was pleased to get home, but that was quite an encumbrance. And I actually had that for about three weeks, at home, they just said, you know, Go home, just you know, deal with this just give everything time to just kind of calm down and then they called me into something they called a Two clinic, Trial without catheter where myself and a couple of other glum looking chaps were sat in a room, sipping water and taking it in turns to sort of try and, try and pee and also we had ultrasound scans done to see kind of what was in our bladders, sort of…

I was able just about to pee on my own then, and went home without the catheter. But slightly anxious because it wasn’t a normal pee at all, it was certainly squeezed out to some degree, but I was so determined to get home that’s what I did. Having got home, things improved gradually over the period of the next week. And I think there was probably about another week after the catheter had been removed before I would say that things were back to normal. And that was a, that was a huge relief actually because that, you know, that really restricted my mobility, and all the rest of it.

What did you do? Did you strap the catheter and the bag to you, under your trousers to your leg?

Yes, yes I had baggy tracksuit trousers and I strapped it to my calf I think from memory. And then at night I was able to connect it to a sort of something else which kind of had a larger sort of collection, bag or whatever. But that was unexpected, from my point of view, and actually yes, the quality of life or whatever post surgery, that was, that was the worst bit for me.

Did the hospital, did the nurses themselves give you information and leaflets?

Yes, yes they gave me information. I mean there was quite a lot of stuff about diet after the surgery. And basically since the surgery I’ve been on a low fibre diet, so avoiding all the things that you’re encouraged to eat if you haven’t had this sort of surgery. Like you’re sort of fruit and whole meal flour, and all the rest of it. And so you know there’s a lot of information about that . They also gave me some sort of initial sort of information booklets, I think probably from Beating Bowel Cancer and Macmillan, which I then followed up and found there was an awful lot more information available on-line.

Beating Bowel Cancer have a good scheme set up where they try and buddy you up with somebody who’s actually gone through something similar, but maybe is a few years sort of kind of further on from you, and has volunteered, I can’t remember what the term they use, A friend or something like it. We did actually explore that briefly, but once word got out in the local community because I wasn’t, well I was, I was keen that people knew what was wrong with me basically, I haven’t kept this from any sort of colleagues at work or friends or family, so they were sort of kind of aware of it pretty much straightaway. I just wanted people to know because obviously it was going to have an impact on my life and all the rest of it. But through that sort of informal network I found out that somebody who I knew vaguely had actually gone through a very similar scenario to me five years earlier, and is still fighting fit and around now, and essentially sort of in the clear to all intents and purposes. So I actually didn’t pursue the sort of buddy arrangements that Beating Bowel Cancer would facilitate. Instead of that I contacted somebody who I actually knew already a bit.

What was your pain relief like? Pain control.

What I do remember is I had morphine which I was able to sort of manage that myself. I think in the first day or two I was probably, I remember other people commenting, this was something that you could administer yourself through a little sort of clicky thing, and I think I was at times clicking it rather a lot, although the machine itself regulated to ensure that you didn’t overdose or whatever.

But I don’t have any recollection of being in significant pain, despite you know, well I suppose the keyhole sort of helps there aren’t major incisions going on. But no, I don’t have any recollections of being uncomfortable, in pain, following that. I think the pain relief was perfectly adequate for me.

So how long did you have a morphine pump?

It wasn’t the whole time I was in, as I said I was in sort of six days. It probably was the first two, possibly three. And when they withdrew it I wasn’t suddenly aware of the fact that you know things hurt. I think they, you know the timing was obviously about right.

There was an alternative regimen which they could use, which again consisted of Oxaliplatin infusion, but instead of taking tablets, which were converted to 5-FU, sort of metabolised, in your body. It was actually taking 5-FU directly intravenously. Which means that the site, the regimen that I switched to, something that’s called Modified de Gramonts consists of, its two week cycles. I go in on day one, have the Oxaliplatin infusion, but I actually have that through something called a PICC line, which is basically a sort of a semi-permanent tube, narrow tube which goes into a vein in my arm. And actually feeds delivers drug into the vena cava, so the big vein near to my heart.

The drug was infused that way. Now one of the advantages of that for me is that I’m actually totally unaware of the fact that the drug is going in. I don’t have, there’s none of the local sensitivity that I experienced with the lines going in the back of the hand, or the arm. it’s the same drug going in, but it’s just much, a much easier way to sort of have it delivered from a sort of a comfort point of view.

What then happens is instead of taking tablets for the next two weeks, they actually then set me up with something which is called a pump, which actually consists of a balloon full of the drug 5-FU which sits within something that looks like a clear plastic baby’s bottle, hangs from a sort of a holster on my belt essentially, and delivers over two days, the 5-FU directly through the PICC line into my, into my veins.

And again I mean I, there’s no sensation associated with that at all. it’s only two days and then it’s done and dusted so out of a 14 day cycle, there are two days when I’m sort of, I have this plugged in and the drug being delivered. Following that all I have is a very discreet , I can probably if I stick my arm in the air, it’s tucked up here. Am I allowed to do this sort of thing?

This is the PICC line here, I don’t know if you.. So the vein, the tube is going into the vein here, it disappears down a hole there; this is a sterile dressing which is changed weekly on top. And this is where things are connected to, so the drug is actually delivered into here. So for two days I have a tube connected to that, which kind of I tuck under my shirt, it goes down through a bottle on, or a pump on my belt, and for the other twelve days of the two week cycle it just sit’s discreetly tucked away, and that there is no sensation like that doesn’t hurt at all. .

I think, I mean they give you a big long list of side effects, and I think I’ve probably experienced most of them to, to some degree. One of the most, one of the dramatic ones really was something they call I think hand-foot syndrome. Which is associated I believe with the Oxaliplatin and at the same time as I was having the problems at the end of the year, the beginning of this year, so in sort of January time when I was in hospital after the problems with the initial regimen, my hands went really quite dark red colour, and the soles of my feet as well. And quite a lot of skin came off, it was quite a, it wasn’t just a very superficial kind of like sort of after sunburn sort of type sort of skin just peeling off, just the outer layers. It went, it was quite deep and it was quite unpleasant.

Horrid.

I think it was more unpleasant for others to look at, I think. I mean we used a lot of moisturising creams. I was in hospital at the time, and they were able to give me some, some ointment, creams and so on to sort of help with that. But that, that again is listed as kind of one of the known sort of side effects.

Have you got any message for other people who are going through this, or about to go through it?

Well there’s one small practical point which is something which sort of affected me slightly. Essentially, depending on the time of year obviously your treatment is starting, it’s clearly a good idea to have a flu vaccination, and getting that done before your chemotherapy would be a good idea, before you start obviously becoming more vulnerable to infection. And also in my case we didn’t manage to do that, it wasn’t kind of on anyone’s check list as far as I can establish, of things to do before starting chemotherapy. So we had difficulty actually finding an appropriate time within the cycles when my neutrophils were good and my temperature wasn’t high and all the rest of it, to time that.

So obviously discuss with your doctor but from my point of view it would have been much more reassuring if I had managed to get the flu vaccination done before I started chemotherapy.

And you know it goes beyond the immediate kind of ileostomy itself. I mean I did experiment. I’ve got some special pants which they’re not as great as I thought they might have been. They were I think oversold slightly. But also I wear a lot of the time, I think they call it a hernia sort of support belt. But it’s basically just a slightly elasticated belt around my middle, which will help keep the bag in place, but also it’s quite nice, there’s times when if you don’t have this on, I, it feels like the bag can sort of tug slightly. With it on I’ve got sort of even pressure all the way around me in a big circle around my middle, and that actually just feels much more comfortable. Whether it will actually reduce the chances of me getting a hernia, which is one of the things that can happen when you have an ileostomy, I’m not entirely convinced about that, but it, and the surgeon doesn’t seem to be any too worried if I do develop a hernia anyway, because he says it’s easy to fix at the same time as the ileostomy reversal, which will happen in due course. But just pointing out that there are a range of products that go beyond actually just the bags, which I would encourage people to look at. And experiment with.

I mean I was started on a regimen of chemotherapy which involved a drug called oxaliplatin which was infused on the beginning of a three week cycle. So on the first day I went in as an outpatient, to something called the day treatment unit at the [name] hospital, was given this infusion, and so a line was put in a vein in my arm or in the back of my hand. That went in over a couple of hours; and actually the site where the drug was going in became quite uncomfortable. And that’s sometimes even the kind of the limb that the drug was going into became quite uncomfortable during that time. And that sort of discomfort lasted a number of hours afterwards. So it was a good idea, certainly for those early cycles to have somebody with you to drive you home, I would sort of say for that particular regimen anyway, because yes it wasn’t particularly comfortable.

So the oxaliplatin went in on sort of day 1. I then had two weeks of tablets to take of a drug called capecitabine. So that’s taken orally it’s absorbed in the gut and it’s actually converted to an active chemotherapy drug called 5-FU. So that was the regimen that I started off on.

I wasn’t quite so prepared for the, for the length of time that the surgery took, but that was partly because they did it largely keyhole. They said they would aim to do so if they could, so a lot of it was done keyhole which means, they’re obviously operating through from the, well they’re operating through from the front, making holes in my, across my sort of my belly. But the area they were trying to get to was kind of right at my back, so lots of things in the way that had to be sort of pulled aside and I can imagine that was kind of fairly time consuming. And there are lots of important nerves and other things in the way which control, amongst other things your ability to pee and to get an erection. So I was glad that they took their time over that. I think I was about six hours of general anaesthetic.

So what are the incisions like if it was keyhole? How big are they?

I think they were, there’s one that, I actually can’t remember because you’d be hard pushed to find the scars for the keyhole now. There were two or possibly three, I’m not sure if they were all proper keyhole because I had some drains put in as well. But I mean they have healed fantastically well, it wasn’t entirely keyhole, there was a stage where they did have to kind of take a probably about a six centimetre cut below my belly button, down, and that again healed very nicely.

But as I say I think I was reasonably well prepared for that, and when I came round after the surgery I did have a bag, a sort of pouch for the ileostomy, as we had sort of expected would need to be the case.

Strapline’ Chris recalled that his surgery was mainly done by keyhole and that it took about six hours.
Keywords’ ileostomy, surgery, keyhole

So I’ve had the surgery. I was in hospital for about six days after the surgery, I could have gone home possibly a day earlier, but I did have a bit of a wobble on the day they were planning to discharge me when I was basically tasked with removing the ileostomy bag and cleaning myself up and putting a new one on. So I mean my, my routine now is to do that still every couple of days, it’s something that you need to be able to do yourself obviously before they sort of let you home.

And I don’t know, there was just something psychologically that sort of got to me, there is a little bit of a yuck factor that you have to get over. But that was my one, my one wobble and they decided that it would be wise, and I was happy too to just stay in another night, and then repeat the exercise the following morning. And it went absolutely fine. So I was then kind of able to look after myself from that sort of perspective.

And, and really the, the ileostomy has been far less of an encumbrance than I had imagined. I mean you know, they really are quite discreet, leakages happen occasionally, sometimes it’s because I’ve been a bit lazy and I’ve pushed things and sort of left things a bit late before actually emptying a bag, but generally speaking its, yeah, it’s far less of a deal than I anticipated it would be.

Does the skin get sore, or is it fairly easy to look after

I think yeah generally it’s been fairly easy to look after. I, again the, it’s the colorectal nurses; there are specialist nurses who sort of helped get me sorted out in hospital in the first place. I phoned them up a couple of times at various points.

There are a myriad of products around this, there’s you know a huge range of different sizes and shapes of bags and adhesives, and all the rest of it. And if something isn’t working for you then I certainly would encourage people to you know talk to the specialist nurse probably who sort of is looking after them remotely probably, though not necessarily seeing them. But just give them a call and they can often arrange for you know samples of alternative supplies to be sent to you. And, and you can try them out.

And so there are different wipes for kind of removing the adhesive, which I’ve tried over time. Something that I have used more recently because there was just a little bit of soreness developing on the skin, it’s like a you know a barrier, so again it’s like a sort of a baby wipe type thing, you wipe it round and it just creates an extra sort of protective layer on the skin, but you can still then stick the bag over the top.

You can order it. The ordering system locally here has certainly been very good as well. I mean they basically sort of set me up with an account with one particular, I think they manufacture and supply products, but they will supply other people’s products as well as their own.

And the way that that system works, is, is pretty neat. You have to be thinking probably about a week ahead. So you need to be sort of, you know, checking your stock and thinking about a week ahead, but given that I only change my bag usually three and half, four times a week maximum or whatever, that’s not too large a stock I need to kind of worry about.

But essentially I phone them up, tell them what I want. They drop a note to the GP because these items are prescribed, and the GP I think fills out the prescription and sends it back to them. They then courier the goods to me. That sounds like a lot of stages but actually I’ve never known it take more than about five working days from start to finish so that’s reliable, and that’s, you know, that’s important to know.

Very useful. And that’s all paid for by the National Health Service?

Yeah, oh everything. I mean yes, I mean because of the cancer diagnosis I get free prescriptions anyway, and these are all prescribed items.