Hi Ned

How are you -I see you have a delay with the surgery ?

xx

Forgot to say have you looked at the- Looking good Feeling better courses , I booked a skincare and make up one for 24 January .xx

Hi,

yes, 7 week delay. Apparently it's standard policy throughout the UK, unfortunately nobody advised me that this was the case. Had I known, I might not be in this situation. I've not got a new date, hopefully it will be end of January. I'm just worried about the delay. Cancer cells only found in 1 of 3 nodes but until I have the auxiliary clearance, I can't be sure it hasn't spread. 
 

How are you doing? X

I'm sorry that's so scary.Do you know what grade yours is -might make you feel a tiny bit better if it's slower growing , mines grade 2 

They only took one node out for me which was positive unfortunately.They are not doing ANC as they said radiotherapy is just as effective , but I will be starting chemo in a couple of weeks first.

Waiting for ultrasound on other side xxx

Thanks Minty. 

Yes that is my concern with going private, will there just be delays there too and just pay £££ as well. I am just making enquiries everywhere and contacting people and even looking at going abroad but that is very difficult with 2 kids, one of whom is sitting gcses this summer and other is asd/mute and terrified of covid tests etc. So would need to be alone and I don't drive. 

My hospital are saying private may be quicker so will see, really resent having to pay £££ to just be able to talk to a doctor and get surgery but my life is at risk, or at least going to stage 4 is a risk and then incurable with these delays. Issue is the hospital is 100% full, I do think surgeon wants me treated asap but issue is have to get ct back then 2 committes, then see doctor then surgery wait. And the nurses will not allow me to book appointment with doctor even though the doctor wanted me to have one and the ct said I need to see doctor. 

And the 7 week delay if you get covid is terrifying with 2 secondary aged kids where about 25% of kids have it atm. I am just having to isolate but very hard to not be with anyone or go to appointments alone (that is the rule in our trust though tbh that is the least of my issues). 

Hope we can all get treatment soon, really should not have to be fighting for this on top of a diagnosis to deal with. 

Hi 

Thats strange isn't it because I would rather have ANC but they are saying radiotherapy for nodes for me.Will talk to Oncologist tomorrow.

Yes I'm worried about covid delays too especially as Boris already mentioned cancer appointments. I am lucky I have had the mastectomy and SNB at least.

Take Care xx

Yes it's really not fair , but I would be thinking the same as you , if I can pay and get appointments and treatment started I would.

My son has autism too, he's 16 , so I understand this is an added stress.His behaviour was really challenging when I was diagnosed and going for op , he has started to calm down a bit now.

Sending hugs x

Hi Silkie,

I have just been reading your posts and hope you don't mind me jumping in. I was diagnosed with stage 1 BC on 6th October and had surgery to remove it 5 days later. I'm in Wales and was obviously delighted to get the surgery so quickly but they have a severe backlog for radiotherapy and wouldn't have got it until January 2022 which would be over 3 months. I've gone private for this and completed it last Friday at a private cancer center in Liverpool. I will have a follow up with the onco shortly.  It is possible to go private for certain parts of your treatment. My friend paid private for diagnostics and then went back to NHS for surgery etc. I may not have grasped where the delays are for you as you have quite a bit going on, but would it make sense to get all of the diagnostic tests required done privately and then get referred back for the surgery. BC seems to be one area where communication between private and NHS seems to work quite well. This might reduce the time waiting for scans etc which reduces your risk of waiting for surgery. Hope that makes sense. 

Best wishes 

Jane xx

Thanks very much Jane and Minty. I put a complaint in on Friday night and also sent to Chief Executive guessing his e-mail and yesterday got e-mail from Chief Exec Chief of staff saying terribly sorry they had discussed it and would refer to PALS to manage. Then an hour later phoned and given CT results a week earlier than planned (adrenals are benign but need further investigation) and they said surgery would be early January. Then an hour later surgery on Friday, pre op today. Very happy.