Hello
I have just joined. I though I posted this to this group a couple of days ago but can't find it. Apologies if I'm duplicating without realising.
I posted this as my intro to the site and was pointed to this Bladder cancer group, I've added to it a bit this morning.
I'm very grateful for what I have read so far. It's so important not to feel alone and to be witnessed with kindness. Thankyou everyone.
I have been diagnosed with Muscle Invasive Bladder Cancer and have not yet had any chemo or the removal of my bladder, womb, uterus, lymphs, urethra etc. I had a TURBT on the 23 October.
I have been experiencing great stress with difficuluties, delays and broken promises for dates for MDT meetings and chemo commencment. Plus there were delays for 5 months of diagnosis as I was bleeding from both womb and bladder, the first 5 months were focussing on the womb/fibroid which wasn't significant.
Sadly the communication has been such that it has hard to have faith in what we are told. I fell between 2 Departments - Gynae and Urology and 2 health boards the initial board can't do radical surgry and I have to start again with a new pathway in a new board/hospital. I was promised a more urgent timetable for MDT and chemo start but it didn't happen and I had to do days of chasing to find out what the situation is.
I'm supposed to be discussed in the MDT meeting today, after 2 failed dates I feel desperate for this to happen. There's talk of a meeting with the Oncologist on the 23 December, but given the lack of any official letter/appointment and all the recent failures I'll believe it when I see it. It's not possible to give me an indication of when chemo might start.
I've arranged a £180 meeting privately with the consultant on the 20 December to try and get clarity about, treatment, what's possible etc.
It has been hugely bewildering and frightening. I'm very grateful for my GP who is unhappy with what has been happening but his hands are tied.
I feel so anxious and stressed. It feels like my life is already over. I weep a lot.
My brother was diagnosed with uncurable cancer 2 weeks ago.
4 weeks ago I was organising the funeral of one of my two closest friends.
My other best friend has been battling recurrent colon cancer for the last 5 years.
Life seems full of despair.
I'm so sorry to be so miserable but I am struggling to keep a positive perspective. I wish I could feel more calm in the not knowing.
I know that everyone here also has sad suffering too, I wish you all the best that can possibly happen.
xxx
Hello and welcome to the group. I did acknowledge your first post which you can find in THIS thread. The site can be a bit difficult to navigate at first, no apologies needed here.
Really sorry to hear the way you have been treated. We know it is not uncommon for ladies in particular to be diagnosed late. Something bladder cancer groups have been trying to make GPs aware of. We also know that sometimes the admin side of things can go wrong and we have to chase up appointments. Have you been allocated a CNS (cancer nurse specialist)? If so, this is the best person to call. If not, phone the urology secretary and chase things up. You also need to phone the oncology secretary. An oncologist may offer a different treatment plan. It is stressful enough being diagnosed and being left in limbo adds further anxiety. Once your treatment gets under way, you will feel a lot more positive as you the have a goal to focus on. Keep on talking to us, there is a lot of support here and people understand. Best wishes.
Thanks for the info and kindness.
Sadly the cancer nurse specialist was one of the people persuading me not to have private chemo by promising to bring things forward on the nhs side. She meant well but wasn't able to deliver what she promised, it has meant a month of wasted time and now it's Christmas with more delays. I texted her 2 days ago - no reply yet.
Wales NHS is particularly stretched and no choice of where treated like in England. Feel very stuck.
Good idea about the oncology secretary, I'll try and find them on Monday.
Once treatment starts I will feel better, the thought of the cancer spreading terrifies me.
It's good to 'hear' people here.
Sending much love and wishes for wellness to everyone ♥
