Oncology dragging their heels

Hi JulieJLM!

Aw bless you! Sounds like you're going through it!

The waiting is always the worst bit! Its so scary not knowing!

It can sometimes take a while for the medical teams to make a plan as there's so many departments involved and they have to work out which would be the most beneficial and effective for each situation.

Definitely keep pestering them though, I had to have a hysterectomy for an unrelated problem and I struggled with illness and heavy bleeding before I had it done for a long time and I had to keep on calling and going to my doctor's to try and expedite the operation, it does help.

Meanwhile, there's always lots of people here on this forum who can support you and you can chat with, these guys have helped me immensely through my journey so far. I felt really alone and super scared before I found them!

Wishing you the best of luck with whatever the docs decide to do and I hope you get some answers soon! Keep us all posted and we'll be here for you!

 Kitty xxx

Thankyou for your very kind reply. It’s been awhile catalogue of having to push the NHS to do anything. It’s exhausting and scary. I will continue to push for the help my husband needs. It’s so upsetting that he’s paid into this system all his life and now that he needs timely intervention it just doesn’t happen. The nhs knows how aggressive this thing is and know the consequences of not acting quickly yet they just drag their heels and don’t even communicate the fact that they’ve made a decision to make him wait. They don’t give the criteria they use to make this deviant on even let him know! We have to chase them to find out they’re not doing anything for yet another week. Tired of excuses and lack of communication. A  sad you may be able to tell from my reply, I’m not impressed! Hearing from others in the same boat is helpful though. Thankyou. X

Hi JulieJLM,I’m so sorry your husband is still waiting.Unfortunately waiting is common.I was T3b G3 muscle invasive and classed as urgent.I waited over a month to see the surgeon oncologist and another for bladder removal.The logistics of getting the team together for major surgery must be a nightmare.This was explained to me at the pre op assessment.It doesn’t make it easy for the patient having to wait in pain and discomfort,it is a worry for everybody.Keep pushing and I hope you hear soon.Love Jane x

Thankyou for the information. We're well over the "62 days" to start treatment. My husband hasn't even got an appointment to see the oncologist yet for pre bladder removal chemotherapy.  The figures for your cancer are the same as my husband's. Part of the problem is the local hospital don't appear to have a urology ward. The hospital my husband was then sent to don't do bladder removal so he was referred to yet another hospital. Every hospital seems to "loose" the referrals e.g. the letter to the surgeon sat on the desk of  a surgeon who is off sick. If I hadn't have chased it, it would still be there. No communication and people not doing their jobs seems to be the norm, not the exception. I hope that you are doing OK. I do appreciate the time taken to answer my query. I wish there was a way that people could unite and put pressure on the government to change the system and the attitude to patients.

Thankyou again,

Love Julie x

Hi Julie,I agree it’s not good enough.I was already under cancer surveillance so I contacted the hospital when my symptoms changed.You do usually have to go further afield for cystectomy because it’s major surgery.They have to make sure you can get a bed in icu or high dependency post op and getting the team together takes time.It is incredibly frustrating and most on here have experienced delay at some stage.It is good that you are there to support your husband and chase these appointments up.I really hope you get somewhere soon.I had to bypass our useless health centre completely in order to get treatment and they were spectacularly unhelpful post op.I feel for you and your husband it’s a horrible situation to be in.Love Jane x