About the author
My name is Linda and I had my cystectomy with ileal conduit in October 2023 following six years of an incurable and very painful chronic bladder condition. My husband and I recently celebrated our 60th wedding anniversary and to celebrate we went on a Rhine river cruise which involved a hotel stay, plane travel and eight nights on the boat. We’ve been on ocean cruises a few times and one river cruise, but this was the first time I’d been away for any length of time since my op.
The river cruise
A little bit about river cruising. There are far fewer passengers than on an ocean cruise. There were 190 on our cruise so you’re in far closer contact with people on a daily basis; this is unlike a big ocean cruise where you can be as anonymous as you want. In our experience, the staff onboard are very accessible and generally knowledgeable about local facilities at moorings etc. I mention this because on the river cruises we’ve been on there are no onboard medical facilities although I’m sure staff are trained for emergencies etc.
As with any cruise you need a good supply of your stoma equipment with you. Although the boats stop off along the way you’re not necessarily going to be able to get anything you need in local towns. For this reason I did take my medical supplier’s (Fittleworth) emergency number with me as they offer a worldwide service. Thankfully I didn’t have to test this out!
Packing for the holiday was interesting not having done this for more than a couple of nights post-op. I diligently worked out how many items I normally use for the time I was away from home, then doubled it as suggested on travel tips.
Getting my bags packed
Then I realised we were staying at a hotel at Heathrow before flying the next day, so I needed to pack separately for that, as well in my overnight bag. Then the decision of where to pack the rest of it – it seemed like an awful lot. What with bags, pastes, wipes, adhesive removers, disposal bags, night bags and my collapsible night stand (lightweight, packs flat and I use it at home, easier than a clunky metal one) I was wondering if I should charter a plane rather than just one seat! Some bits went into my hand luggage, some in my suitcase. For the hotel one night stay I just packed one bag change (I change my bag every other day) and a night bag, and left the stand in my main suitcase. I took a heavy duty bin liner to put my night bag in just for the one night – that worked really well.
Taking to the air
The next day we flew to Amsterdam to pick up the boat. It was a short flight, but there were added complications of my husband needing assistance – but that’s a different story worthy of an article on it’s own! I won’t subject you to that, but let’s just say that after being expected to push the suitcase trolley while an extremely fit young man power-walked my husband in a wheelchair through Heathrow, I had to channel my normally people-pleaser personality into saying a definite no. That’s one thing I’ve learnt – you have to find your voice to take care of yourself sometimes.
Safely on board
We treated ourselves to a veranda cabin giving us a slightly more spacious cabin and more importantly – a shower. To be honest if you’re going to do this sort of holiday make sure the cabin is large enough for twin beds (you can always push them together) and make sure the shower room area is big enough to move in and change your bag etc.
Onto dinner time and meeting some of our fellow passengers, a few of whom we’d met while researching the boat’s freshly baked chocolate chip cookies and coffee. Our boat did informal dining so no sequins or tiaras, thank goodness. Because there are fewer passengers it invariably gets round to personal questions but I don’t tell all and sundry about my op; I might say I’ve had one if pressed, but I don’t say what it is. I’m there to enjoy a holiday, not relive my medical history to people we’d never see again.
Taking excursions
Daytime brings excursions, if you want to join in. Some of ours were free but involved quite a lot of walking, although they were assessed as ‘moderate’. But we preferred to do our own thing, which worked out well using taxis and public transport. Since my bladder issues, I am not a fan of coaches. Some of these excursions take some time and the thought of being on a coach with loads of other people, and the coach loo breaking down (if there is one) filled me with dread. Maybe that’s just me, but I prefer to enjoy my day rather stay in a state of near panic every time we see roadworks that could hold us up.
The one thing I did which I gave myself a pat on the back for was to take my trusty night bag stand. I’d read several travel accounts about dealing with night bags when away and thought that maybe I was being over-cautious taking it. I could have used a strong bin liner but in our cabin I couldn’t tuck it under the mattress as that sat in a well and you couldn’t get to the underneath of the mattress easily, so my stand was the best thing I took with me. Apart from anything else I find it so much easier to empty my bag on a rigid stand rather than flapping around the loo bowl.
The days roll on as does the river. No major problems, or many minor ones come to that. There was the young security lady in Basel Airport who, after frisking me, insisted on seeing what was on my stomach after my hip set off the security alarm (I was taken to an enclosed area). I don’t think she had any idea why I had a bag full of wee with a big tap on the end, and she and her colleague didn’t stay there long enough to find out. Quite funny really, or at least it was for me.
Heading home – what did I learn?
What did I learn from this holiday? To organise things before you go (and don’t forget your explanatory travel certificate like I did!), to use your voice and be prepared to say I can’t, I mustn’t etc. Most of all, enjoy every day. We’re a unique group of people and I for one am happy to embrace my new life. Do whatever makes you happy – but maybe leave lifting that large suitcase to someone else.
A huge thank you to Linda for sharing her story!