Where do I go for help? UPDATE

Be kind to yourself,  sounds like you have been through a lot.  I would suggest approaching your GP who hopefully would arrange an urgent referral to the hospital in order to investigate the pain that you are experiencing.   Wishing you strength and lots of love x

Hi Delilahlonglegs,

I'm sorry to hear you feel you are being ignored by services and family.

My understanding is if we have any pain, any concerns we contact out BCN, and they arrange for us to be fasttracked to see the consultant to at least put our mind at ease.

It is a horrible time. Even when treatment finishes and you are told you are cancer free, it's difficult not to link any pain to cancer.

Please be kind to yourself. My daughter reminded me I had aches and pains and other things happening in my body before cancer and will get illness that is not linked to it after cancer.

I hope you get to speak to someone soon who can treat the pains and hopefully alleviate some of your stress.

I wish you well in your recovery xx

Hi there, sorry to hear you're being pushed around by the system.  Personally I'd make an appointment with the GP and ask for a referral (assuming your oncologist won't see you) and tell the GP that you've tried the breast care team with no success.  Best wishes 

You say your husband can’t cope with you showing any pain or distress so you don’t tell him. I’m not making excuses for him but maybe he doesn’t know how best to help you or even what to say  

Maybe it would help if you set out what support you expect and need from him. Remind him of what you’ve been through and your current uncertainties. Try to do it as unemotionally as you can and be as matter of fact as possible. 

if he isn’t receptive to that approach or is unwilling to listen do you have a relative or friend with whom you could try same approach?

if that doesn’t work, ask your GP for a referral to a suitable counsellor or get in touch with Macmillan again. When you say your Macmillan nurse is ignoring you - is she not returning your calls or something else? 

I wish you a better year than the last one  

what pain are you in? I finished  Radiotherapy in November and when I spoke to a breast nurse before Christmas she said the aches I was getting could go on for up to 12 months. She also told me that I would still be under them (the breast clinic at the hospital) for 5 years and any concerns I was to contact them directly. If you can’t get any help from the hospital then I’d get an appointment to see my GP. 

I'm also on the Optima trial. Please contact your research nurse - they need to be aware of any issues. I did when I had any problems and they were great. If you are unsure who your research nurse is, call oncology, give your name and say you are on the trial and need to speak to a/the Optima research nurse. I hope you get the help you need soon. I really do feel for you. Take care. 

Update

Thank you for all your kind replies. I don’t feel so alone now.

My symptoms were to do with my remaining breast and it feels lumpy too. I could be wrong about the lumps being new because I have ignored this breast since the mastectomy.

I am coping by being proactive. The main reason why I was posted was because I was told that the Breast Care Nurse is attached to my Consultant and as my Consultant is on long term sick leave, I don’t have a Breast Care Nurse. This is not true as she should be with me for 5 years. She is the gatekeeper to my care team, so she does not have the option to dump me.

I have contacted the Consultants secretary and had a mammogram a couple of days ago on the remaining breast and have an appointment this month for a follow up with another consultant. I will have my questions prepared for then.

Thanks again

Determined to be Positive x

Thank you. It’s really helped posting and I don’t feel so alone now x

Thank you. It’s really helped posting and I don’t feel so alone now x

My doctor just keeps pushing me back to the  oncologist and refuses to write to them. I sorted with an appointment now.

tx

Thank you. It’s really helped posting and I don’t feel so alone now x

I have significant pain on the right where I had the mastectomy, tissue expander fitted and lymph node clearance. I also have an issue where I create abnormal amounts of scar tissue fast. It’s so tight but I am determined to get all my nerves working and improve mobility with rigorous exercise. I expected that.

The pain was in the remaining boob. There are red dots and bruises on this boob and it’s lumpy.

I have had a mammogram a couple of days ago and have follow up this month.

thanks again x