Newly diagnosed and terrified

Hi Maria, Thanks so much for your words and advice. My treatment starts  on Monday, I've had some bleeding so they have managed to get me into the treatment schedule sooner than I expected, which is a great relief. I'm looking forward to starting to tick off the days from Monday.

I'm so pleased that your treatment was successful and you are now fit and healthy and feeling strong, that's brilliant x

Thanks for taking the time to reply to my initial message,  Sally xx 

Hi May,

Thank you so much for replying to my  message. I hope your recovery is going well and you are feeling more comfortable.

I am starting my treatment on Monday and am scared and really pleased that they have been able to start me sooner than I had expected.

I think I am finally accepting that I cannot control this and that I simply have to try and stay positive, keep myself as well as possible and trust in all the wonderful medical staff who know what they are doing and have my best interests at heart. I t's a big step... but no going back now.

Many thanks

Sally xx

Hi Sally

Sorry to hear you’ve been in hospital, but it’s good news your treatment is starting on Monday. Any questions at all about any aspect of the chemo and radio, please just ask. I’m assuming it’s the usual Cisplatin chemo? How many sessions of radiotherapy are planned? I’m hoping that your petscan didn’t show anything else and your staging didn’t change. 

All systems go next week then, and you can start to count the days off on your calendar to the end. It seems endless at the start, but suddenly you’re half way through, then three quarters and then it’s all done! I started my treatment at the beginning of November and got finished up on Christmas Eve.

Sarah xx

Hi Sarah,

My PET scan showed 'early stages' so my staging changed to 3c, this was scary to hear but it could have spread much further so I'm trying to see that in a more positive light than I was previously(some days easier than others). Yes, it's Cisplatin chemo once a week for 5 weeks and then radiotherapy daily for 5 weeks  . I've been reading lots of the other feeds on the forum and the info on both treatments has been really helpful in trying to prepare.

I guess my biggest fear is that if I feel really  sick with the chemo , will I be able to do the car journey for the next day's radiotherapy? If you have any advice on the sickness and whether you had to miss any appointments because of this it would be really good to hear.

My current view is that no matter how sick I feel I've got to get my 'big girl pants' on and simply got to get to the hospital, no matter what......but I'm ridiculously scared of this!!

Thanks as always Sarah

Sally xx

Hi Sally

The chemo is a low dose designed to help with the effectiveness of the radiotherapy. You are given anti sickness meds with the infusion and also anti sickness tablets to take home. Personally I was never once sick, nor did I feel nauseous. I know there are lots of horror stories about the effects of chemotherapy, but not all chemos are harsh. I actually felt it was a very relaxing day sat in my recliner chair! Typically I don’t hear stories of people being sick with Cisplatin, but it’s always important to let the nurses know of any side effects you experience.

It’s important with radiotherapy that you don’t miss any of the appointments, so I even went straight from my hospital bed after my embolism to get to my treatment. 

I’m sorry your staging changed-I’m presuming there was some lymphnode involvement to make it 3c? I’ll tag a couple of the ladies who have successfully completed their stage 3c chemoradiation to hopefully give you some reassurance. Lulabelle Snobird 

I think your fear will diminish once treatment starts-we are all scared of the unknown, but it’s really perfectly manageable and many of us have successfully come through it.

Sarah xx

Hey Sally D.  I was also terrified when I received my staging of 3C1 but like you kept telling myself that it could have been much worse.  Treatment is very doable and as Sarah says you only have to speak to the medical team about any issues affecting you and they will tweak your medication.  In my case it was extreme diarrohea from about week three but they fixed that.  The treatment is very effective and it is true that you will feel better once treatment starts - and meet some lovely people along the way. I am 20 months post treatment and so far all seems well.  As Sarah says, Chemo days can be very relaxing.  I found my bleeding stopped around halfway through the second week. Do all you can to help your body cope (eating well, exercise, sleep plenty etc) and I'm sure you will be just fine.  We are always here to help if you have any questions along the way but please keep us up to date and let us know how you get on. Good luck for Monday but you will be just fine.  You will find you are so well looked after xxx

Hi Snobird 

Thanks for popping in Julie! Gosh, it’s hard to believe it’s 20 months since your treatment-time flies! Good to hear everything is still going well for you-that’s really good news. 

Sarah xx

Hi Sally

I just wanted to stop by and say hello as I also finding myself embarking on this “journey” having just been diagnosed with 3C1 

Waiting on PET-CT scan but then will be going through chemo radiation at the same time as you. 

Wishing you all the best and sending hugs x

Thanks Sarah, yes it is quite hard to believe.  We quite often lose track of which year it all started and which year I finished treatment etc.  It kind of all becomes a bit of a blur!  I am also very happy that your issues were treated successfully earlier this year and I hope there are no more scares.  Also very glad you finished your hard work Saturday with a little tipple.  I did too...  well may have been a very slightly larger tipple.......xxx

Fingers crossed for a better year coming up! This year has been just awful for us in far too many ways, but having my gallbladder out was actually a plus point and very straightforward.

Nice to have a little treat last night-we all deserve them now and then. Another busy day ahead but at least I have a clear head this morning.

Sarah xx