So sorry the secondaries diagnosis is a total bummer.
I chose to keep working because i couldn’t face days sat at home with nothing to do. So far i’ve been lucky as i’m tolerating the treatment for my secondaries well.
I guess you just need to work out what you enjoy doing and how much you can physically do, based on how your treatment effects you.
I would say that its important you get out of the house and don’t spend all day inside, unless you are feeling really ill. Treat yourself to something you enjoy, a nice coffee out, a walk in the park, visiting an art galley etc. Plan a short break.
Its hard to adjust from full time work to nothing when your well so don’t be so harsh with yourself.
Hi there Bunty_B
Hope you are starting to get your head around things. It is a struggle isn’t it? I’ve been coping with secondary for the last 7 months. It’s definitely a process. And there is grief and sadness.
And eventually there is happiness, as a new normality starts to emerge.
I reckon spend this time doing what you have always secretly wanted to do. What were your passions when you were younger? Can you explore any of these passions that you haven’t had time to over the years?
Hoping that you find lovely new routines -maybe get outside- visit nature. Walk. Meet friends. Act as if you are on ‘holiday’. Support your wellbeing and new self that is emerging. lee
Thanks Lee, the benefit of people’s experiences here has been of great help, as has a local support group I’ve found. Where I struggle is there seems to be a constant stream of cancer stories in the press, people with cancer, really gloomy stuff. I still haven’t told some of my friends because I get tired of explaining what it all means with regards to the rest of my life.
I’m a year in from diagnosis, I took six months leave from my job, I went back in February and was very ready to go back, I find working is what keeps me feeling normal. I have tolerated treatment very well so that helps.
I have always had a small social circle so outside of work I tend to keep to myself with some social interaction which my husband is supportive of my alone time. I spend lots of time in my vegetable garden which is relaxing to me. Not going to lie, I still struggle ALOT, I’m sad, angry. But when I’m with my husband and two adult daughters, I laugh. I’m 48 and want to see so much yet.
The waiting is certainly the worst part Bunty.
I was first diagnosed with Lobular breast cancer in 2009 had double mastectomy, chemo, radiotherapy and Zolodex. Four years ago I started to feel a change in the scar tissue went to breast clinic and was not taken seriously in fact didn’t realise but dr has mixed up which side my original tumour was! (I had several tumours one side and in-situ the other)
In the last two weeks I have been told it is back in my lymph nodes and have had an awful wait as delay in CT results. I hope to know where I am in terms of stage on Friday. I thought I had done everything I could to stop having to go through this but I have had no screening for 15 years and feel really let down.
Sorry to hear this, Angela. Did you get your results? I’m now in the position where I’m awaiting scans to see if my secondary has spread. It’s a tough time x
I have just been diagnosed with Secondary Breast Cancer in the spine sternum and femur. I have had all different scans and before today I kept getting more and more messages and letters saying there were suspicious lesions on my spine and then highly suspicious ones which disturbed me a lot. I needed to be seen to talk it with an oncologist face to face. The uncertainty has been going on since May. Today I saw the Oncologist who did give me some reassurance that there is treatment , not to cure it but to slow down the spread of cancer. I have had so many sleepless nights but I hope tonight will be a good night as I have been so stressed that I couldn’t relax or think of anything else. I need to know everything about the treatment but not tonight . I just want to feel hope that things will get better. Good vibes and wishes to everyone who is in this situation.
Hi Bunty,
My CT was clear apart from a tiny node on my lung which they don’t seem worried about but are going to scan me again Nov. I hd a lymph node clearance at the end of Aug.
I hope your scans went well? I have pushed for an MRI as I have had some lower back pain and unfortunately Lobular cancer is notorious for not showing up on other scans.
I don’t know about you but I feel like we are in a bit of a no mans land all the treatment I have been offered so far is Letrozole?
Hello funkyfish, well done for pushing for an MRI. My cancer only showed up on one of 3 different scans so best to make sure.
I had about four months in no man’s land so I know exactly how you feel. I was also only offered letrozole. When I went to a local support group and said this they were all shocked, asking me why I wasn’t on this and that. Eventually I had some radiotherapy and was prescribed zoladex injections, ribociclib and denosumab. Now waiting for an MRi myself to check on whether things have progressed.
Everything seems to take time, which is at the very time you feel like you don’t have a lot of!
Good luck with everything, it really is such a tough experience, good days and bad days, I’m having the latter right now after getting Covid, and I’ve had to stop my medication which is very frustrating, until I have recovered from it. I caught it doing volunteering, before I was due to have my Covid jab.
Hope you have a speedy recovery from Covid. I am really hoping that I will qualify for a CDK46 inhibitor as apparently I am just short of qualifying at the moment. For some reason my recurrence in lymph nodes wasn’t given any kind of stage or grade which is what qualifies you, They are now talking about chemo which I really don’t want as been there once and not really prepared to do it again! I have actually managed to see a dr at Guys hospital and she is pushing for scans grading etc. Where I am being seen just keeps making mistakes! It sounds as though you are on all of the best treatments I hope you are tolerating them? Do you mind me asking where in the country you are? Sending lots of love
I’m near Portsmouth, in Hampshire in the south of England. However I am getting private treatment at the moment through medical insurance. It was months after diagnosis before I got radiotherapy and then medication though. Not sure why it took so long. I had a few side effects from the meds - to be honest the worst is repeated UTIs - and really stiff joints which affect general mobility.
So sorry you’ve had mistakes made, I hope things pick up for you soon. I had to be persistent as they tried to fob me off by saying my pains were muscle strains!
I’m near Brighton so also on the South coast.
Makes me angry that not only do we have to go through this but it seems to be a constant battle. I’m glad you found a supportive group … hoping I can too. I was covered by insurance the first time around in 2009 but not now.
lee
