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Feel helpless

3 REPLIES 3
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Member

Re: Feel helpless

Hello Pinklily,

So sorry to hear things seem to have gone rather pear shaped. For what it is worth, what the BCN said originally about seeing an Onco mid Sept and starting chemo during Oct sounds more like the usual. Waiting until end Oct and then Dec to start sounds longer than normal for most people.

I think you mentioned being in touch with your Pals Team. Maybe get in touch with them again and say that you are concerned that you may be receiving treatment outwith acceptable time limits. They should help with communicating with the right people.

By the way, hope your wound that you mentioned in another Post is now healing well.

Best Wishes to you Pinklily,

Chick 🐥 X
Member

Re: Feel helpless

The only down side is Appletree, when my surgeon said I was having surgery on the 14th August, I had no letters from anyone until I chased it up four days before. I had left messages with the surgeons secretary, who never phoned me back. Then had a booking clerk tell me I wasn't on the surgeons list and he had only just phoned her to know why. I've been told the reason for the delay is, the oncologist they have given me, only works for the NHS three days a week. I've spoken to the clinic and they have said, that length of time is unacceptable in my case and there is a possibility I may have to attend another hospital. There were other points in the letter that were inaccurate, but I have decided to write to pals, my surgeon and the bcn to correct these details rather than waste my time on phone calls.

My surgeon said to us, you will be needing chemo shortly, clearly he has no idea of the waiting list.

It would prefer if the bcn had not given me the wrong information and stopped my husband from taking me away for a short break due to imminent treatment after surgery.

Anyway, we are going to go away now for a short break and I'm not going to listen to anything else that the bcn tells me, I mean it's quite worrying when I read the letter to her, she told me that the posterior was at the front of the breast, just under the nipple and then corrected herself to say, I've got that wrong, it's at the back against your rib cage muscle.
Thanks for your input Appletree, I'm always grateful for it.

Take care.
Member

Re: Feel helpless

Pinklily, we all get alterations to our programmes of this nature; it's just part of the whole experience. We are being cared for my surgeons and oncologists who have a very large number of patients to fit into their timetable, some with much more urgent needs than others. The NHS is almost in a state of collapse, organisation and administration is extremley wobbly, and we are all extremely lucky to be getting the care we are being given.

 

It is usual for one consultant to write detailed information to another consultant and to send a copy to the patient; it is an efficient way of working. It is unfortunate if some of the details weren't given to the patient face to face, but that is not always possible. The main thing is, we are being informed.

 

If you wish to speak to the surgeon yourself, you could always try phoning his secretary and explaining your concerns.

 

It is a waiting game for all of us. It is clear from what you have said, that your consultants don't feel there is geat urgency in starting your chemo. So there is no need to be stunned at all.

 

All the best.

Member

Feel helpless

Just been told, by my oncologist's secretary, I can't have an appointment to see my oncologist until the end of October at the earliest, that's 13 weeks after my surgery and then would start chemo in December, but would still have to wait for them to slot me in.

 

Had a copy letter yesterday addressed to my oncologist, saying the posterier margins were close and could not be improved surgically, would have like to have been told this by the surgeon.

 

What's worse is my bcn said I would probably see the oncologist mid Sept and start chemo beginning of Oct.

 

I'm stunned.