I also have a brain condition that was not diagnosed until after my cancer treatment so I am under a neurologist due to that. In fact my neurologist is lovely and restores my faith in doctors - within 5 minutes of knowing I was in hospital and my situation on the ward he was by my bedside and I know how busy he is. I have a neurophysio who I see every 2 weeks is also fantastic although it is often 2 steps forward, 3 steps back. I think this is why I am so disappointed in the breast cancer services at the hospital which are so insensitive, cold and thoughtless by comparison to all the other hospital services I have encountered. My hospital ranks very poorly for its cancer services nationally statistically so it may well be that staffing is the problem.
I know this journey is bit of a rollercoaster for most, certainly during active treatment, but it does sound like you have had a particularly tough time with your recent experience on top of other health matters which I understand (from a quick look at some of your other posts) may be related to your chemo. As you say, with previous treatment staff were understanding, and I suspect maybe the staff you encountered last time were perhaps chronically overstretched, and failed to think about you and your difficult journey since it began.
I really hope the counselling helps. Have you been seen by a neurologist for your leg/nerve issue? Is there anything else they can do or suggest? Or even any complementary therapies which might be worth trying re managing side affects better?
In all honesty one of the hardest things to take has been the borderline callousness of both surgical team and some of the nurses on the ward in hospital. It's sat in such contrast with the empathy and understanding I was shown in 2015 by the chemo nurses and oncologists. It's felt like because I am 'only' having surgery this time it's supposedly not a big deal. But the cancer has come back and I have had 4 years of serious illness and at times live threatening situations and this is at the end of that. And that I am disabled by my health despite being relatively young. And this time I am losing a breast and I did not even have a choice about reconstruction. And I was also really ill after the operation. There seems to be a lack of understanding of any of that. It's treated as just a minor thing like I'm just going to have a cyst removed and have never stepped inside a hospital before.
Good that you found a local charity who can assist and 7 weeks will pass soon enough.
Just to clarify, and I appreciate distance may be a factor, some of the organisations I mentioned do offer 1:1 counselling, not just group support, for example:
I hope you get someone you feel you can be open with, and that it helps. Be kind to yourself and allow yourself time.
Thank you Seabreeze for your kind words and suggestions. When I asked I was told I should go to my GP or pay privately. My GP advised that the waiting lists are so long I would be better to try a local charity. I have managed to find one, but not surprisingly it is oversubscribed but at least it only has only a 7 week waiting list. As someone who is housebound due to my disability I am unable unfortunately to take part in support groups so this I believe is my only route. I have however used the helpline which has been invaluable.
Feel for you, sounds like a tough journey recently and I totally understand your question about psychological support.
Most breast cancer depts have access to either counselling or a psychologist (I think it is supposed to be offered or available for anyone with breast cancer needing such support).
When I went through active treatment it wasn't mentioned, I think in part due to there being a change in the breast care nurse and drop in resource. I only became aware of such support being available much later on, so it is worth asking (if you haven't already). At my hospital there was a clinical psychologist of cancer care, I think part funded by Macmillan and she was absolutely brilliant.
Otherwise you could ask your GP to refer you, although I know waiting times via that route can be very long.
Besides Macmillan, Maggie's Centres, Cancerkin, and the Haven all offer a range of complementary therapies, and some offer counselling, so it's worth checking out where any centres may be located in your area.
I hope you manage to get some support. It also takes time to take it all in and adjust to such physical and emotional changes.
There's lots of help available but it's up to you to look for what you need. This might be a good place to start.
I was initially diagnosed in 2015, had an axillary clearance and local side excision, chemotherapy, dad's and herceptin. I have had numerous health problems since then including lymphodoema, cellulitis, neurological problems and sepsis which have left me disabled. At the end of April I was diagnosed with a recurrence of the cancer and I was given a bone and CT scan which confirmed it thankfully had not spread beyond the breast. I made an appointment with a reconstruction surgeon who told me no reconstruction could be done due to my previous scar damage, lymphodoema, and neurological condition -I was devastated. I had then only one appointment before my operation with the BCN to discuss the mastectomy (although I had to wait two months for my operation without seeing anyone) and will have a post surgery appointment with the surgeon and a prosthesis fitting appointment and that will be it. No counselling of any kind offered. The surgery was supposed to be a day case ( despite me also having a breast reduction), but due to a reaction to the anaesthetic I was in 10 days. Another surgeon (not mine) had a go at me on the ward for taking up a surgical bed because I could not walk and said I should be in a cottage hospital. It seems that the health service trivialises this operation. You feel like you are on a conveyor belt -your breast removed and pushed out the door and left to get on with it on your own. I don't know when I am ever going to get over this but I feel brutalised by the system which does not seem to see you as a person.