What happens once the treatment has completed? Why am I still waiting?

Well , personally you haven't been treated very well at all, totally unexcepable. For other medical problems I have had to chase up consultants and appointments and strangely I could of had an appointment suddenly for tomorrow sadly it clashed with another, so I have it next week and this is a test I am having to determine the cause and damage urosepsis has done for me. I thought I was going mad and its just me, then I read your post and thought no way is this right. We all know that consultants etc are very busy, mistakes, forget about people does happen, but when its you it doesn't feel very good at all its just one more stress and someone who has had a lot to deal with. Congratulations on completing your radiotherapy, did you have a treatment bell there, if so I hope you ring it load. I am sorry to hear you had to sort them out to get your radiotherapy organized. When your waiting on a letter that doesn't come it doesn't make things feel great well done in chasing it down. I haven't heard many but I have heard a few who had some communitation issues, so I guess its unusual but not impossible. Fingers crossed for next Friday, I hope your follow up goes well for you.

Sending a gentle hug

I have had no end of problems with communication, and am having them again ! I raised my "concerns" with PALS last year, the head of Cancer Nursing care actually contacted me and we resolved one issue. However, second time around and I feel like Poopsie that I am abandoned by the system. I have been given appointments for 2 days AFTER my chemo ???? if you've had chemo you know its always pre chemo. I am  left without an appointment at clinic for 6 weeks but apparently this is deemed as OK ? I think that my consultant has been changed but I am unsure, I am in clinic (when given an appointment ) on a Friday , used to be Tuesday, my CNS nurse is not in clinic on a Friday so that's handy as well. I'm tired and feeling very unwell, I have lost my fight tbh. I  e mailed my CNS last week, but have not heard a word, looks like I shall be emailing the head of Cancer Nursing again. I honestly think they don't realise the extra stress this puts you under. I shall keep you posted. 

Love to all

LC

XX

Aww , this is awful. Its no wonder that your feeling so let down and it is draining when you feel your hitting your head on a brick wall, if only they knew how this effects people. I do hope you get a satisfactory answer from the head of cancer nursing although I am sure you wish you didn't need to do it, but sadly you have too, Keep fighting! , but your CNS should be sorting things after all they are your link to your whole medical team. Definitely keep us posted, I am sorry you feel abandoned, sending you a big hug.

Hi Little Critter,

We've found we just have to nag, if you don't get your answers. Keep ringing her. I remember we had awful trouble once when my husband was ill. The CNS resigned, and the new one was coming to terms with everything. I think, again they are understaffed, but that doesn't help you. I don't think my CNS would know me, never spoken. But fortunately, I haven't needed her help. Giving you a big hug, and make a nuisance of yourself. xxxxxxx

H ,

I can't understand why some hospitals are so inefficient about follow up appointments.  I realise I have been quite lucky with my check-ups  Both the hospitals concerned have enabled me to make appointments for my next check when I leave the clinic - even now when it is a year ahead !  Inevitably, once or twice they have later  had to make a slight change to the day or time but the appointment has never been missed.  

How come they don't all operate like this? 

My diagnosis, treatment and immediate follow ups were first class. The CNS were fabulous too although it wasn’t always easy to get through by phone. I’m now on 4 monthly check ups and at most of those I’ve found the discussions and examinations were very brief and I got the impression they weren’t really interested in my continuing symptoms. I saw a nurse in a clinic last August and she was excellent.

I think this shows just how much pressure the NHS is under.

Yes my first time around all good.  This is secondary endometrial  tumour in my lung. I feel no one is really interested tbh. I had no problem with my initial treatment but the administration side of NHS leaves a lot to be desired.  I was  told I was "cured" 3 times but alas 14 months  later it was back with a vengeance. It's hard work to chase all these appointments when you feel unwell, will keep you posted.  I was on 4 monthly checks,  but no CT scan post treatment. 

LC 

X

Positive update ! All sorted by a very efficient and caring New CNS   appointments all in order and seeing different consultant next Tuesday. I can't take the stress these days  

LC

X

Hi Little Critter,

Well done. xxxxxx

That's good news LC. As you say you don't need the added stress of doing their job! Life is stressful enough on this journey. So pleased you have got it all sorted out now. Take care. Love lamb.xx