Bad day at the office

Hi,

I know there are lots of you ladies out there who are and have been in a much worse state than myself.

I was diagnosed in Sep 11, had 3 months of hormnone therapy treatment before surgery for a left mastectomy and total left lymph node clearance in Feb 12 followed by 3 weeks of radiotherapy in May 12, at a hospital 40 miles away from where I live, and now back on the hormone therapy treament. Because of slight heart problems and the fact that I responded well to the hormone therapy treatment it is has been decided that I do not have to have any chemotherapy. Having seen several ladies on chemotherapy when I was an in-patient for 10 days during my radiotherapy treatment I know I am very lucky with regards to that. I was an in-patient because after only 2 days of radiotherapy I was experiencing aggravation to the severe nerve damage I had already suffered from the surgery. Also, besides the nerve damage I have problems with the surgery site or should I say ‘butchery’. So much pain for so long. The hospital which did the surgery is not the same one where I had the radiotherapy. If it wasn’t for the lovely people at the hospital where I had the radiotherapy I would still be so much pain from surgery.

Since being diagnosed I have received very little contact/support from the BC nurses and feel as though I’ve been just left to get on with it. Most of the time I have remained fairly positive but now I just feel abandoned wondering where do I go from here. I know that in about 4 - 6 weeks time there should be a follow up appointment with the Oncologist and should have a scan to check on my heart. Even though I have the support of a couple of really good friends and my son there are increasingly more times when I feel lonely and very tearful.

This Fri, I start a Relaxation and Introduction to Mindfulness Meditaion Practices Course in the hope this will help me. The course was suggusted to me by a lovely lady, a Macmillan Counsellor, when I was an in-patient during my radiotherapy treatment.

As the Forum topic says, I’m having a bad day at the office and needed to share my thoughts. I hope you ladies don’t mind.

My thoughts are with you all,
Helen xx

Hi Helen - the forums are the place to share your thoughts as we all know how you feel. When my treatement finished in January this year I felt abandoned too and worried about every little niggle. Went to see my GP a couple of times and was told try not to panic and worry so much! -Easier said than done.
I go on the thread ‘where did I go’ - when I read the first post on there, I just thought that’s me! Have a look at it and see what you think. You don’t have to post if you don’t want to, just read the posts - its so reassuring.
Big HUG to you
Stella x

Hi Helen

I am sorry to read that you are having a rough time at the moment.

I am posting a link to the BCC ‘Moving forward’ information page where you will find further support ideas and information designed to help people moving on after treatment:

http://www.breastcancercare.org.uk/moving-forward

Take care

Lucy BCC

Hi Helen,
I was first diagnosed in 2008 and I can safely say that I saw my BC nurse 3 times, once to drain the fluid after my Max, once to get a prothesis and a bra and once on advice for reconstruction. Every single time I had to leave multiple messages before getting an answer. I am not really blaming her, I know sheis overworked and I have learnt to find alternative ways for support, my Maggie centre was one of them and this site the other.
We will the there for you

Hi Helen
I read your post…it is difficult once treatment is over and you do feel left to get on with life on your own. I’ve had the same experience with my BCN…saw her for pre op and post op sessions and then twice more at follow up appointments because of problems but apart from that not much support really. I’m trying to find my own support network apart from friends and family of course.
I use the same thread as Stella i.e Where I did I go? and have found the support on there amazing and so understanding. This morning I also thought I’d start my own thread on ‘In Your Area’ and have asked if anyone from my area wants to meet up…I’ll wait and see what happens.
I’m also catching up with old friends and telling them about me and what’s happened, and their understanding and support has been fantastic…I’ve realised that support is not going to come to me unless I seek it out. I found this difficult to do immediately following diagnosis and surgery but as time goes on I am getting stronger and am more able to talk to people without completely crumbling!!
Take care xx

Sounds like I was very lucky with the fnatastic support from my Breast Care Clinical Nurse Specialist Team. Some patients prefer to be “left to get on with it” and that’s their choice (my mother-in-law was an example of this). So the Breast Care Team probably won’t contact you unless you express a need for support. Having had a cancer diagnosis, they are there to support you for the rest of your life.

If I’ve learned anything throughout the process of cancer treatment (and other medical treatments), it is that sometimes it’s necessary to chase things up with the hospital and be persistant if you feel you’re not getting the service you need. I know it’s a pain to have to do this especially when dealing with the emotional aspects of diagnosis and treatment and the tearfulness, fatigue etc. that sometimes come along post-treament but in my opinion, nothing is more important than ensuring I stay healthy and if that means I have to nag and escalate, that’s what I do.