Letting off steam

Hi Ricepud, i think, no i know we are on the same page. I was diagnosed the week we went into lockdown and it was a nightmare. I have fought for every scan, appointment,biopsy results ect now for nearly 4 years and it is stressfull and draining. I have come to realise we are just numbers to the hospital staff and thats not being disrespectful to them as they have a heavy workload, our oncology department are going through oncology nurses at an alarming speed most of them off with stress related illnesses. It can sometimes seem inpossible to get ahead i have been there iand i am in that situation as we speak. Waiting again for biopsy, results further treatment, and getting the nessary apointments i need. I know we have to do it ourselves as you said we would not be were we are today if we did not chase up EVERYTHING so please dont stop, phone all the departments you need to speak to and do not give up or be put off. I find every number for every department i am dealing with ie scan dept, biopsy dept, breast care nurses,oncolgy nurses never feel a nuisance keep ringing please. We need to take some responsabilty for our health and not rely only on the hospital staff, chase every appointment and always ask to be put on the cancellation list and let them know you can be there asap if needed. The process is very slow when i was first diagnosed 20 years ago it was a lot quicker but look at how many people now have to been seen to 20 years ago it has doubled. I was self employed and it was horrible to think can i carry on i had to shut shop unforunatly. to many appointments, scans, surgery, bloods ect. Its hard having to tell the family a friend of mine put together a lovely letter and sent it out to the extended family so they all knew at the same time and she only had to say it once. So if i was you i would keep on ranting and making yourself heard. After all i did and 20 years on i am still here and plan to be as long as i can. I wish you all the best in your journey xx

I can totally relate to the chasing aspect.  I was diagnosed last August while living in France.  Everything was arranged for me, even getting to the hospitals for consultations and treatment (I had my first two months chemotherapy in France upto end November) a taxi / paramedic is provided for every occasion if needed - paid for and no questions asked - cancer is 100% covered in France.

I chose to return to the UK for treatment because my daughter who is 50 this year had been visiting me every time I had chemo - every two weeks and she has a health problem for which she may need surgery. 

I started the process of returning and referral about a month before I returned.  The consultant in France was brilliant - very worried for me, but offered to translate paperwork for the doctors / consultants here in the UK.  Of course you cant get instant referral to an Oncologist, you have to be referred by your doctor and the doctor wont refer me until I am actually back in the UK - but I re registered with my old doctor in the UK prior to travelling back. 

Last  chemo in France was 29th November 23, I returned to UK 3rd December and got my doctors appointment for 4th December - walk in appointment, they were expecting me.  I had got to have another three months of weekly different chemo medication - but all of which conformed to the UK medication.  I chased and chased trying to get this set up and was pushed from pillar to post.  I finally got to see an Oncologist one week ago and even though I had already forwarded by email all the documentation - diagnosis, Xrays, scans, biopsie results etc and given a translation, still there was a delay. 

I will finally re start my chemo this Wednesday coming  17th January - 7 weeks after my last chemo.  And I am only at this stage because I have constantly telephoned and chased in the beginning.  Set aside the fact that I have now got to drive myself to all these consultations and treatments.  I am a little more fortunate in that being 70 I am retired so not working, but the extra expense on the pension is difficult.

Thank you SO much. I will defo ask to be put on cancellation list and say I can be there at a drop of hat. Thanx never thought of that. I phoned previous breast clinic nurses today (1st hospital) so they get it 1st thing 2moro. I may not be under them, but they may give me reassurance or advice or even contact the 2nd hospital (doubt the last option). I ended up crying at the end of the message...I think just the frustration and worry saying it out loud got the better of me. The nurses at 1st hospital have been great so far, so hopefully they'll ring me 2moro. But I'll ring 2nd hospital 2moro about cancellations. Thanx. Xx

Oh my goodness that sounds incredibly frustrating!!! The last thing you need ontop of chemo is all that too. I'm glad you had the strength to keep pushing. But why is communication between different health services so poor? Makes life more difficult for everyone...staff and patient.

Wishing you the VERY best of luck with your ongoing treatment. Massive hugs xxx

I really feel for you..... and sending hugs and support....keep phoning, keep baraging.... it works in the end - although you should not have to do that.

Let us know how you get on xx