Advice please

Hi Sozza,

I can’t comment on how quickly things are moving regarding appointments etc., but you’ve been referred as urgent so don’t be afraid to chase it up! I understand that the NHS is under pressure at the moment but so many people are still slipping through the net so to speak & it’s not good enough. If you don’t have a number for the team you’ve been referred to at Addenbrookes have you been given the number of a specialist nurse? If not then I’d be phoning the last point of contact you have & chase things up. I know circumstances are a little different at the moment but going back to my own diagnosis in 2018 I was seen around a week after my diagnostic scans to discuss treatment etc. 

Nicola 

Hi Sozza 

I fully agree with Nikki, chase it up. Phone and ask when you might hear Re next actions. I’ve had to follow up a number of things and sure some things wouldn’t have happened otherwise. Admin is often poor and it’s easy to fall into a hole. Good luck! 
Ruth 

Thank you Nicola and Ruth

i chased up and last point of contact managed to get hold of the lead oncology nurse who was very helpful and put me on the clinic to see the oncologist on Monday, so hopefully things will move forward now, thank you both very much. Reading people’s stories and advice on here over the last few weeks has been a lifeline and so helpful in the dark hours when I have felt very alone 

sorrel

Hi again Sozza, 

I’m pleased you chased things up & you’ve been given an appointment. Hopefully things will get moving now. This is the beauty of the online community, as long as we’re here you’re never alone. 

Nicola

Thank you

its all moved quickly, saw oncologist Monday, prep scan tomorrow (Friday) starting Radiotherapy and chemo on 1st of March

Terrified,

That’s really good news Sozza! The time in between is their planning time as the radiotherapy is very targeted which ensures minimal damage to surrounding areas. 
The treatment itself is not painful and very manageable, you will be fine. The water drinking and holding I found hard if any delay - I had a few accidents but the radiographers are used to it 

I hope the Chemo is kind to you. They give you a long list of what may happen but honestly I had very little. So  for you. 
Don’t forget we are here to answer any questions, having been through it recently I’m sure will be able to help in some way 

CT scan is fine 

come back with any questions, but remember be brave, be strong, be positive.

Ruth

Hi Sozza, 

Thats great news that things are moving quickly now & it’s perfectly normal to be feeling the way you are, I did too. I wish I’d had hindsight as those feelings really weren’t necessary 

As with Bottom56 I had little to no issues with the chemo, my oncologist told me oral chemo doesn’t have the harsh side effects that the infusion kind does. Any skin reaction you have to the radiotherapy will be very gradual & you’ll be provided with any lotions & potions needed throughout just make your team aware of any issues you’re having & I’m sure they’ll do their best to remedy them & of course we’re always here with lots of support & some hints & tips that have worked for us during treatment.

Good luck with your planning scans today & you know where we are should you need us. 

Nicola

Hi Nucola

thank  you, strange I was told the IV chemo will be better for Me as less side effects , and because of my internal plumbing I was unable to have the oral? 
fingers crossed then xx

I'm the same as you, I start Chemoradiotherapy on the 22nd of this month. I'm terrified. I've called it my all expenses paid to Chernobyl. I must say that having interactions with the lovely and very knowledgeable people on here has helped me especially as I know that they're the voice of experience. We're only a week apart on starting our treatment so maybe nice to let each other know how we're doing and support each other if you're willing. Xx

Ah Sozza, so does this mean you’ll be having your chemo first & last week of treatment? This is the standard protocol in the US. Your oncologist obviously knows what’s going to be best for you & the treatment regime that will be most effective for you too. 

Nicola