Just when I thought I was getting to end I find myself back on this emotional rollercoaster and I just want to get off.
Had my radiotherapy planning appointment yesterday to be told a lesion has been found on one of my kidneys, and I’m now on the urgent 2 week wait as apparently I now need a ct scan with dye which I haven’t had, I’ve asked all along why I haven’t had any mri’s or Ct scans to be told I didn’t need them and now this.
I am so upset and frustrated with the whole thing, the traffic to get to the radiotherapy is horrendous and I’ve five consecutive days of that starting next week (I know I should be grateful it isn’t 15) but I’m in total despair after yesterday.
Oh no. I’m sorry @chillout365. Did the kidney issue show up on your planning CT for radiotherapy? I keep wondering why I havent had any mri or ct scans like so many on here have too. Hopefully the kidney issue is just something small and treatable. It must be worrying but try to relax as they will get it sorted. Is there any other way you can get to your radiotherapy appointments so you avoid traffic? I’m plan to get train to mine as in the car it will take an hour through centre of Birmingham, but my local train station is 35 minutes from the one at the hospital…if i ever get my results and an appointment that is.
Sorry about your news. I hope it all gets sorted soon. It certainly is a rollercoaster. We are all here for you x
Oh @chillout365 I am so sorry to hear this setback. You sent me such lovely comments when I struggled with my diagnoses so I just wanted to send you lots of warm hugs from the Highlands. Thinking of you and wishing you good results.
Yes it was found yesterday at my Ct scanning appointment, up till that point I hadn’t had any
MRI’s or scans.
I’ve decided to drive to Meadowhall on the outskirts of Sheffield and then get a train into the the centre, then either taxi or walk to the hospital.
It took us a good 90 minutes yesterday for what should be a 50 minute journey. My husband is starting a new job on the 11th March, 200 miles away so can’t be here for all off it. Friends have offered to take me but I don’t think it’s fair as it is such a horrible journey.
I hope you get results soon, are they due next week.
Thank you so much for your reply. I got prescribed my Letrozole and bone tablets today, well the oncologist rung me and send she was sending me the prescription another joy to look forward too.
That’s a long journey to your hospital. Are you on 5 or 15 days? You probably said before. I hope its 5 days with a journey like that. It’ll be tiring so make sure you get rest during radiotherapy. But I’m sure your friends really won’t mind helping you out.
I hope your husband gets on well with the new job.
Oh no what an awful worry. When I was diagnosed I wasn’t originally due to have any scans. I only had my first CT with contrast after they found a sentinel lymph node with macrometastasis and vascular invasion. Otherwise because of my cancer type they wouldn’t have done that. When I finished chemo I was told that they wouldn’t do any scans to be sure that I was clear and they’ll only scan me if I experience symptoms or pain that lasts more than two weeks. I believe it’s down to what type of cancer and grade it is as to whether you get MRIs etc. It’s all very confusing and disconcerting when you see some people getting all the tests at the outset and does leave you feeling like you’re not getting the best treatment when you don’t appear to be getting the same.
I really hope you get your results quickly and that its nothing untoward X
Can you get transport @chillout365 ? … my cancer hospital offers all radiotherapy patients free transport … regardless of whether you are on benefits or not … i had either a taxi or a hospital vonunteer driver for 16 journeys…1 planning and x 15 actual treatments …maybe you could ask?
The lesion could be something or nothing… these scans can show up innocent lesions as well…but i understand how scary it must be waiting to know …I was grade 2 and was told I didn’t need a ct scan as spread was unlikely…i told the oncologist that i couldnt live with the fear of not knowing so she agreed to a scan …i think different hospitals have different protocols…hope it all work out
So sorry that this has happened and I will keep my fingers crossed for you and hope that it’s nothing serious .
I remember driving to visit a relative at the Hallamshire and it was a horrible drive - a good idea to park at Meadowhall and get the train. Some Hospitals do offer transport - one friend was driven from Scarborough to Castle Hill Hospital (near Hull ) by a volunteer which would have been a good 3 hour round trip just on its own - it might be worth asking . Do you know how far it is from getting off the train to the Hospital ? I’m thinking there’s probably a bus and there may even be a bus that goes to the Hospital directly from Meadowhall .
On a lighter note if you don’t feel you can ask your friends to drive you all the way if like mine they love to shop they might be perfectly happy to have an excuse to at least drive you to Meadowhall and wait there for you . I wouldn’t mind betting that you do have friends who would happily drive you right to the Hospital and would want you to ask - you sound like a very nice lady who would do the same for them .
Hi, Weston Park provide a free shuttle service from Meadowhall (I think you have to park in a certain place) so I would recommend calling WP to find out more. Alternatively, Firefly are amazing and provide transport from the Doncaster area if that is any help - they pick up at certain places where you can park. They definitely pick up at the Morrisons supermarket just off the M18 at Bramley. I hope everything is ok for you, I’ve got my planning appointment there next week x
Hi blue lagoon and everyone else that has replied to me.
I can get firefly but I have to drive 8 miles to pick that up and then I’m dependant on their timings.
I have two small doggies at home alone so would worry about them if I’m gone all day.
I think there is a tram that runs frequently to the hospital from Meadowhall so I’m going to try that option, my husband is around to take me for the first two sessions so I can see how I get on and how I feel about it, I have provisionally booked firefly from Bawtry but will cancel that if I think I will be ok to take myself and let someone else have my seat who may need it more.
Good luck with your planning appointment I had mine on Tuesday and starting treatment 9 days later.
Quick update to everyone, finished my radiotherapy today follow up appointment in May, so far so good.
Ct results have come back that it is a cyst on my kidney which has been to my mdt, apparently they are quite common and you don’t know they are there, so that was a big relief today.
Hope everyone is doing okay
Sending hugs to all
J xx
Good news, well done you.
I start my radiotherapy next week and although they have explained how it all works etc I’m still worrying about the side effects (I always get them quite Severe) and can you feel it when it’s happening…as they said you may get sores and redness like a sunburn…well I know that hurts!
I had five sessions and so far haven’t noticed any side effects but was told they may not be for a couple of weeks.
I have been using moisturisers three times a day, as the oncologist instructed me too.
You don’t feel a thing when having the treatment and like I said I have no redness as yet. I think when you bath or shower don’t have the water to hot either or that could make it go red.
