Clear Cell Adenocarcinoma

It’s not a silly question at all bless you - CNS stands for Clinical Nurse Specialist. Basically cancer nurses who are typically there office hours Monday to Friday who are there to support you. I phoned mine a lot and it didn’t take long for them to recognise my voice when I called! They will also have access to your notes and will be able to directly contact those in charge of your care. At Southampton there were three main ones plus extra Macmillan nurses who helped out. At least one of them also attends the MDT (Multi Disciplinary Team) meetings where patient scan and test results are discussed generally before we get them. So they’re handy people to know. My hospital was an hour’s drive away, yet, when I left home I knew I might be away from home for anything from 3 to 6 hours because of delays with the machines (delays are typically almost inevitable) - which is why accommodation is important if you live far away.

Let me give you an idea of why delays can happen: 

- before pelvic radiotherapy, you have a bladder scan to make sure it’s at the right amount of fullness. Mine had to be over 40%. If it wasn’t, I’d either have to wait on the table (if it was almost there) or I might have to go out to the waiting area and drink some more. So that can add on time. There’s also often have a mini CT scan before your treatment to make sure your pelvis is in alignment with your position from your planning scan. The radiology staff do try to get you into position first, The mini CT can take about 10 mins - if you’re not quite aligned and within the margins that the machine allows, it would have to be done again after your position had been adjusted. So that can take time too. And if that can happen to you, it can happen to other patients before you too and cause delays. Then there’s the machines themselves. There was a power cut a couple of times during my 25 sessions - which meant the machines had to be reset, and resetting took an hour. And if there’s a fault on a machine, and they need to get the engineer in, that takes time too. (The treatment itself took under 10 mins by the way!)  My hospital has 7 machines, so sometimes there was some swapping around between machines if this happened, though a power cut would affect them all.  Some patients get upset about delays but it can’t be helped and it’s just something you get used to. One day I arrived at 5 and was told there would be a 3 hour delay so I went off to the M&S Food Hall on site and  got some dinner. I’d say on average the wait was only an hour or two, but you’d never know from one day to the next how things would be running. So you can probably see why having somewhere to stay would be important for you with that length of journey. 

Hi @Suki Silver

Did you mean Galloway rather than Galway? Seriously the journey time is too long at 4 hours, wherever you live! Daily radiotherapy involves Monday to Friday every week, so 5 weeks of that with the travel, the waiting at hospital, getting treatment isn’t really feasible. And the effects  of radiotherapy are cumulative so you may find yourself becoming very tired and perhaps having bowel or bladder issues as the treatment progresses. That would make train travel difficult. 

If patients are having to travel those kind of distances, then there is very likely to be some sort of arrangement which will enable you to stay locally. Seriously, travelling those distances daily really isn’t possible. I hope you can get some other arrangement made. 

Sarah xx

Yes I meant Galloway, I think that must have got auto-corrected and I didn't notice lol

Thanks for the heads up about side effects, I hadn't been warned about that!! I really can't get a hotel room. I'm absolutely sure I can cope, I've had to take trains right after grand mal seizures before, and that's BAD. You won't believe what a lifetime severe epileptic can push through. People don't realise how tough it makes you.

MarmiteFan59 made some really good points about delays. These happen very regularly in a radiotherapy department unfortunately and can significantly increase the amount of time you are there. I had frequent delays due to machine malfunctions and bladder issues-too full, not full enough as Marmite has said. I had a 1.5 hour journey each way by car for my treatment and found it really tough as time went on. 

We are speaking from experience, having been through this, and while radiotherapy itself is painless it is not without its side effects. Doing that trip daily every weekday for 5 weeks is likely to be very, very difficult, especially by public transport and to be honest I’m astonished that it would even be an option. 

At the moment, with the best will in the world, you don’t know what this treatment will be like for you, but I wish you all the best if this is how you decide to approach it.

Sarah xx

Suki Silver, could I just ask why you’re saying you “really can’t” get a hotel room? 

It's just too expensive, the price of them is shocking  

Suki Silver, the point we’re trying to make is that the health authority may pay for your accommodation. 

Hi Suki Silver It might be worth checking if the hospital has a in-house hotel facility. I had my op at Nottingham University Hospital and they had a hotel facility over the maternity wing. Mind you it was quite noisy with blue flashing lights lighting up the room all night!

Hugs, Barb xx

Hi, I know that the health authority in Orkney pays for flights and accommodation for locals receiving treatment in Aberdeen or elsewhere in Scotland. Have you spoken to Dumfries and  Galloway Health Board about your needs?