Newly diagnosed

Hi Ruth,

That’s great news that you are clear, hope all goes well on Friday.

Thank you all so much for the support and advice, you all have given me the courage that I can do this, I know there will be tough times ahead but I had got myself in a state about the unknown, when I spoke to the nurse at the hospital it was like a perfect storm hitting me, I had Visions all my lady bits and bum never being the same again, and the  pain would be horrendous. I know it will be painful and can cope with that, especially after reading how your all got through it and the different ways you coped. I just hope I cope as well as you all did.

Going to see my grandchildren at the weekend so it will be the boost I need.

Again thank you all for replying and helping me I really do appreciate it.

jane x

Hello Jane, 

I too am recently diagnosed (12 days from consultation to scans to biopsy to diagnosis - I have 2 tumours - anal and pelvic). So, just as you are I have been terrified by what is to come. However having found this place I’m feeling a lot more comforted about what to expect. Everyone here as been so welcoming and helpful!

I still have to meet with my oncologist this Friday so don’t have a treatment plan as yet but am told it will probably be the 5/6 week chemo radiotherapy plan. Not sure if will be through my bladder or not so I share your concerns. I’m making a list of questions to ask him as I go along and this site has been invaluable for that. 

I‘m so sorry that we are all having to meet in here but on the flip side I feel blessed to have found the right place to come for guidance and reassurance. 

Literally we could not be in better hands! 

M x 

Hi, Sorry to hear about your diagnosis. Before  I joined the group I felt lost but now I feel so much better about everything. The information and reassurance has been invaluable.

I made a list and got all my answers, still didn’t process it all till a few days later.

I too feel blessed to have found you all. 

jane

Hi guys Popjar, Prettypinkroses,

Regarding the radiotherapy & your bladder, the mapping of your treatment will obviously aim the radiotherapy at your tumour but the nature of the pelvic radiotherapy means that everything in the pelvis gets a little fallout including the bladder, everything possible is done to protect the bladder during the treatment. I was always asked to arrive to my radiotherapy appointments possibly an hour or 45 minutes early, 30 minutes before my appointment time I had to drink 3 disposable cupfuls of water & wait for my appointment, this fills your bladder & hopefully lifts it as far out of the way as possible to avoid unnecessary damage from the radiotherapy. The radiation cystitis that I suffered was apparently the urethra becoming irritated from the radiotherapy & resolved itself after a couple of weeks. I hope this helps ease any worries you have.

Nicola 

Hi Nicola

Thanks for the advice will certainly be trying that.

can I ask does your lady bits apart from the bladder get sore !!!

jane

Hi Jane (Popjar),

Unfortunately my lady parts were just as sore at the end of treatment as my bottom, mine definitely took a hit & although the skin stayed in tact things were quite red & swollen, my radiotherapy team & oncologist supplied creams to help with this & I was permanently lathering cream on at every opportunity, it did help. I must reiterate though these side effects do happen gradually it’s not like you wake up one morning & everything is so sore etc., you will manage them with the support of your treating team gradually as they arise. 

Nicola 

Hi, I am having a stressful week. I had my first weeks transport sorted out and my sister was going to come with me for support, So Wednesday for some bizarre reason she’s txt to say she was not going to help me in anyway during my treatment. That in itself was a shock, so my concern is and hope one of you lovely people can answer me this, will I be well enough to drive myself to Christie’s which is about 45 mins away each day for treatment. The first week being Chemo/ radiotherapy. I can get hospital transport but don’t know what involves.

Would really appreciate and help as feeling really down at the moment

Thanks

Jane

Hi Jane Popjar

I drove myself every day. Started off with husband driving me for a couple of days but that was more stressful due to delays (machine breaking down, patients with difficulty) so drove myself. Mind you I’m only 12 mins drive away but think would have been fine if longer. Our hospital has special parking spaces for Oncology patients which also helped. A couple of tips though, I had urgent BM movement at times and some accidents so I had a just in case bag with pads, wipes, knickers, spare trousers in it. I also asked to change my times to as early as possible to reduce delay times, easier for me as closer to the hospital but quite a lot of my appointments were 8 - 8:30 which was better as my first week I had 5 delays which is difficult to manage with the water drinking!!! Parking was also easier the earlier I went! Other top tip is have ear pods so you can listen to something whilst waiting, and a book to read. 
Good luck at sorting out but I preferred driving myself as then you only have yourself to worry about!!! Oh and I also made some terrible smells which meant only I had to suffer them :-) 

Ruth x 

Hi Popjar I drove myself there and back for the first 3 weeks, 1.45 mins round trip. My partner drove me there for the last 2.5 weeks but to be honest I could have driven myself it’s just he was off work on holiday then. I asked for radiotherapy appointments in the pm as the morning was the time for toilet runs. As Bottom56 has said, after week 3 I took a ‘just in case’ bag although I never had to use it. I would check up now on patient transport just ask your treating hospital what their arrangements are, it’s quite straightforward to sort out. Some people do start to feel tired early into their treatment. 
I’m sorry to hear about your sister. Has she given any reason for this at all? It’s a shame she feels like that, maybe best to talk to her if you feel you can. Bev 

Hi. Thanks for advice will definitely  get myself an in case bag !!! Does the BM problems start gradually over the first week or is it more as time goes on. 
Will drive myself I think as less stressful to ask anyone else. 
Thank you all so much for advice. 
Take care

Jane