Hi there, welcome to the forum and people who know what you are dealing with.   Our case is lung cancer, which took months to diagnose and some consultants with no bed side manner at all.  From the date you are diagnosed with cancer there is a time limit to be treated for chemo.  We were waiting for a visit and cancer chat to the chemo ward when they rang the same morning asking if we would have the chemo that day as they had gone beyond the time scale set and would be fined by the people in charge.  This was not our fault but like your Mum delays had occurred that we hadn't contributed to.  Forms lost,  signatures missing and other delays.  However once chemo began we were looked after.  She will have Mc Millan nurses allocated to her, they will talk to all of you, especially if Mum gives permission.   Telephone numbers direct to them are supplied, they help with forms and give advice as they will have her records.  So don't despair,  we've all been through it in some form, it's not helpful when it's your Mum but don't sit back and take it, fight on her behalf as she will be coping with a lot.  Good luck for the future.  Carol 

Thank you Carol and thanks for the warm welcome I am so glad I found this place, I am very confident they want to operate first to remove it so I cannot imagine chemo will be soon but it is nice to know they take the time limit seriously. She hasnt been anywhere near a cancer / chemo ward yet or seen an oncologist even though she was diagnosed almost 3 weeks ago when they cut her open... so far a pretty large team of various colo-rectal and lung docs who were brilliant until recently and kept pushing back meets.

They seem to be fairly poorly organized, they couldnt even tell us where she was after the emergency operation and she was missing for hours but they saved her life and her recovery is going well. Just worried now about the NHS and bureacracy, we will indeed fight for her.

thanks again

Hi sorry about your mum you must worried sick.if you feel that your mums not getting treatment.you can ring the mc.millen nurse helpline.theres also the marie currie nurse helpling you can get numbers from google .but theres a system in place at all hospitals called pals the patient liason service you can get number from the hospital they are independent and unbiased but carry a lot of weight .have a word with them and see what they say they can investigate for you and give you some answers . Regards p 

Thanks I will look into it, its only been a few weeks since diagnosis so we will wait and see what the consultant says but the recent slackness and failing to inform us of changed appointments and that my mum wasnt going in has thrown us into a spin and made us wonder if it was good news ie they werent worried or a taste of things to come

PALS I am googling it up now thanks for the info we have never heard of them before :)

Thanks again Carol we are still within the 6 week timeframe, today just concerned us cos the hospital is quite a trek and my mom is still weak. To arrive and be told it was all a mistake and not only that the appointment was cancelled too and noone had bothered to inform us was quite stressful and confusing ... that plus the doc who did explain it was cagey.

Fingers crossed they do not cancel again and they will operate soon. Thanks again

I know it's stressful,  we got called back, not knowing what for, my husband is an amputee so not easy to park,  find the reception and get to room, it turned out they'd lost the signed papers we'd done previously, could we sign them again.  They obviously haven't heard of Royal Mail!  So not much consolation but it's happening to us all. Sometimes it's the straw that broke the camel's back.  Hopefully all will fall into place.  

Yes its not on realy . If you just give them a ring they may gee them up . Your mum deserves better treatment try to get a ds1500 form out of them entitles you to disabled parking badge and extra money but you will have to investigate that you should have been appointed a mc millan nurse who gives advice but you seem to be falling through the cracks best wishs .p

Hi Dean,

I'm so sorry to read about your Mum's condition. I can relate to how slow the NHS can appear to be in moving from diagnosis to starting treatment as I've been through something similar with my Mum and with myself. Once treatment starts, time will seem to pass very quickly - it really is a roller-coaster ride.

I'll try not to repeat what other people have said, except to say that you or your Mum would do well to keep in touch with the hospital until you are convinced that arrangements are in place and that appointments are being made and kept to. Don't be rude but ask as many questions as you need to until you are satisfied that things are on track. The waiting seems to take forever and we all worry about whether the damned thing is growing and spreading.

The fact that your Mum wasn't referred by a GP initially will have no bearing on how long she will have to wait - the clock starts from the instant a referral is received and a referral from A&E is just as valid as a GP referral. There is a 62 day referral to first treatment target which applies to most cancer cases - this is for first treatment, not for diagnostic tests. The only time this is stopped is if the patient knocks back treatment - amazingly a lot of people delay things if they have holidays booked.

After I had finished my own tests and scans I had a consultation with my surgeon during which my treatment options were discussed. Your Mum will not be told what has been decided, she will be asked which options she prefers. In my own case, surgery was ruled out because my cancer had grown around my aorta and I was referred to an oncologist who after discussion with me proposed a care plan and explained the risks and benefits offered by the treatment options open to me. I'm not a medic or anything, just a patient who has been through the process, but if surgery and chemo are offered there often needs to be a gap of around six weeks between any surgery and chemo to allow the surgical scars to heal as the chemo attacks fast growing cells and cannot tell the difference between cancer cells and cells which are growing rapidly as scar tissue helps mend the surgical incisions.

Good luck!

Dave

It really is a rollercoaster and we will take your advice and we will be calling the consultant to confirm the appointment, diagnostic tests are done so yea hopefully wont be too long to wait and the mdt put a plan and timetable together which they let us know about lol so she can choose a path

Thank you everyone you guys are wonderfully knowledgable and friendly :) cheers Dave