Treatment

Hello Mrbrown 

That's a hard one - so here's a link to our general financial advice:

Cancer - Benefits and Support,

The best advice I can give you is speak to our Support Line on 0808 808 00 00 between 9am and 5pm when you should be able to speak to a financial advisor.

Your hospital Radiotherapy department should have details of local transport arrangements for you - if your hospital has a Maggie's or Macmillan centre they should also have details of any local transport arrangements.

For your Radiotherapy your partner would be able to go as far as the waiting room - but for the treatment you are on your own - there's no facility for them to be with you or watch the treatment.

I hope the above helps.

Best wishes - Brian.

Thank you Brian for the advice I have got a telephone appointment on the 22nd with macmillan to speak about all my options 

Hi Mrbrown , I would just add that during RT you shouldn’t have any problem using buses.  You are unlikely to feel ill from the process and your immune system should still be ok.  If it was chemo, then that’s a different story.  Maybe give it a try.

Hello Mrbrown

You haven't said how far the bus journey to & from hospital is, but although I can't speak from personal experience as I drove to & from appointments (about 1hr each way), I agree with David2017 that using the bus shouldn't be too much of an issue and it's certainly worth considering.  Maybe you could do a test run by bus beforehand to see how you get on?  

If the RT treatment is with a full bladder then the best tip I can suggest is to make sure that you go for a pee several times before leaving the hospital as you will probably be drinking more water in a short space of time than you are used to.  You will be given detailed instructions about your hospitals preferred preparation is when you have your planning appointment.

The treatments are normally Mon to Fri so over a 4 week period but some hospitals also do them at the weekends as this helps with any waiting lists they may have, but even then I believe that a 2 day break in treatment is usual. 

Do you have any friends or family that you could enlist the support of that would be willing to help out by taking turns in driving you to & from appointments.  Even if they couldn't cover all the appointments it would help make a difference?

Best Wishes

Brian 

Hi Mrbrown . Not from this group but had 6 weeks of daily radiotherapy for bladder cancer and met many of the prostate guys there each day. I was transported every day by the NHS volunteer ambulance service which comes under hospital transport. A 70 mile round trip and most of the guys used this service.  I am in the NW but have seen this service used in other parts of the country on here. This was arranged for me by the oncology reception when I went for my planning session. I didn't have to ask but something you could look in to. At the planning session they give you a daily planner of appointments and the transport service also gets a copy in order to call at the right time. You cannot take anyone with you as they pick others up on the way, unless you need a carer with you.  I found the waiting area very friendly and upbeat and met many of the same people daily. I hope you get sorted. Best wishes.

Hi there. I'm sorry that you have to travel a long way for your radiotherapy. Not as far as a friend of mine who lives on the Isle of Man who had to move to Liverpool for a month for his treatment.

But in any case, I drove to my sessions most days and drove back and for me personally there was an advantage to this. When I am a passenger in a car and I want a pee then I usually end up having to ask the driver to stop. But when I'm a driver of a car the urge to pee doesn't actually  become imminent while the car is driving along and I am concentrating.

Also the hospital parking was free. They just gave me a pass to get out of the car park. The business about work only allowing you one month off sounds unreasonable to me. My employer told me, and I have checked and they're right, that as a person with cancer I am protected by the Equality Act 2010 and your employer has a duty to make "reasonable adjustments". You're going to need to stay reasonably close to the loo in between your sessions and so being at home is preferable and if you can work from home, so much better. I don't know what type of work you do but if it's not normally the sort of thing you can do from home, see if they can put you on some different duties for the period of your radiotherapy so you can log into a computer in an afternoon say and do some sort of computer-based thing.

There is another time period that you haven't mentioned and that is after the radiotherapy. It does take a week or two to settle down, as far as I'm aware in most cases and certainly in my case, and you don't want to be at work for that.

Your employer needs to be aware of the value to it in investing in your health by allowing you to have treatment and recover from this illness. I got this of Linkedin:

"For employers and managers: If a seasoned team member faces this, supporting them pragmatically pays dividends. Look after them, acknowledge their reality, and remember that when they say they are fatigued, they aren't making it up. Helping your more experienced men navigate a health crisis painlessly is the most effective way to retain institutional knowledge and mutual loyalty."

Have you spoken directly with MacMillan about these things yet?

Lemsip

Your radiotherapy is most likely to be weekdays-only with weekends off. They gave me an appointment card covering each week. I asked if the timing could be moved on one of the dates due to another issue, the card came back with that day crossed out and another day added on at the end.

We only drove to the various meetings and scans at the first (closer) hospital where I knew car parking wasn’t going to be a problem. For the four weeks of RT, which was at a very busy hospital further away, I drove to a local railway station and we then took the train, with one change, to get there and back. I had seen the almost stationary car park queues there before the RT started.

The only day my wife wasn’t with me I jumped on an almost empty bus back into the city, sat at the front upstairs and enjoyed both being driven and having a good look around…! We did over 100 easy train journeys to and from the cancer centre. To me, using public transport was much better than driving across the city every day.

Also, talk with Macmillan about your employer only allowing a month off work. It doesn't work that way, and you count as a disabled person while you have a cancer diagnosis, and hence they have to make adjustments to your work to suit your capabilities during treatment, and cannot discriminate against you for this protected characteristic. You won't necessarily need all the time off, but you might need to work from home (unless that's completely impossible), and due to treatment induced fatigue, you might need to be working part time, and with time off for the treatment and traveling obviously. The fatigue will continue for some time after the radiation (typically at least 4 weeks), and they will need to make adjustments as necessary until you are recovered.

If you are self-employed or a contractor, then that changes things.

One issue with public transport is that you might find the radiotherapy makes you have sudden urgency to use a toilet. You usually have to drink lots of water just before each radiotherapy treatment. I tended to wait around in the hospital for 30-60 mins after each treatment to allow time for that to pass through with at least 2 toilet visits before going home. I would either go back into the radiotherapy waiting room and chat with the other patients (fantastic conversations in there), or went into the Macmillan centre (or Maggies, whatever your hospital has) where they have a lounge for cancer patients and you can have a chat with staff or other patients if you wish to. Sometimes, they run events there, such as how to manage on ADT, relaxation, aromatherapy, acupuncture, etc.