Hi Karyn,

Of course I remember you, it's lovely to  hear from you. I'm glad you're doing well, let me know how your surgeries go. 

My hair is growing back, I used the cold cap so was never completely bald but had a 2 inch parting and incredibly large crown. My hair also snapped off so it's very short. 

Stay in touch, I hope I can support you  and the other ladies on this thread are incredible.

Lots of love,

Sue xx

I hope your mammogram and MRI come back negative, I can only imagine the stress you're going through. I still suffer from back and bone pain but it's early days. 

Sue, what an awful decision to have to make!  I saw your message earlier today and this is the first chance I've had to reply.  I've read some of the comments but not all.

I think it depends on how easy it will be to completely self-isolate.  Is it you and your husband/partner at home?  Can the two of you stay home til the treatment ends without going out at all?  Are you prepared to wipe down absolutely everything that comes into your house - food, post, parcels etc?  I guess this is what you'd need to do.

Will have a bit of a read through now, I just wanted to at least touch base with you x

Oh, and I looked at that tool mentioned and I hope to God I did something wrong because it gave me a 9% chance of surviving 5 years!

oh that must be wrong claire,think the nhs need to take it offline!!! x

Hi Claire,

Don't panic, the tool doesn't work for triple negative breast cancer. 

I live with my husband and youngest son who' s recently moved back home.  My husband has been furloughed and my son's working from home. They both have to go back to work in July. It's a tough decision as I want to give myself the best chance but there's no actual proof it will work.

Love Sue xx

Hi Sue,

I'm glad your hair is growing back and I'm positive that over time you will begin to feel better in yourself.

After a cancer diagnosis we believe our lives will never be the same again but there are positive cases out there and that is what keeps me going as well as a healthy diet, exercise.

I'm sorry you are faced with such a difficult decision as regards to the oral chemo and that you are finding it hard but personally I think I would try everything that's offered to help prevent a recurrence which is the worry for us all!

I'm finding myself barely able to function since my screening on Tuesday and distracting myself as my as I  can but I have little focus because of my anxiety.

One of my ops has already been cancelled which was going to be in April and been postponed until June 3rd but may be subject to being cancelled again because of Covid.

Keep well Sue and make sure you you eat and sleep  properly as hard as it is at the moment.

You will get through this trying time, positive thoughts ok.

Best wishes

Karyn xx

Hi Karyn,

I can imagine the stress you must be under waiting for your results, do you have any idea when to expect them? I hope your op goes ahead as planned then you can start to live again.

I'm leaning towards not having the oral chemo as the risk of catching the virus and not being able to fight it is a huge concern and the Oncologist can't give me a definitive answer as to whether it will even work. I have researched it loads but different experts have different options. 

Take care of yourself and all my will power is with you wishing you positive results from your mamogram and MRI.

Love Sue xx

Hi Sue,

My mammogram results should be 2 weeks or so and for my MRI I had an email from the Patients know best website with a link attached from the hospital saying my MRI results will be available to view online on 9th June and I found it all quite alarming as they're obviously in no hurry at all while I'm having to just plod on as best I can.

I dont envy you having to make that difficult decision and your fear of catching Coronavirus is of course a major concern, and that risk may possibly outweigh the advantages of you having the treatment. I really dont know on that front and it's a shame your oncologist cant help you with any information about any further studies or research that has been done on this!

I wish you all the best with whatever you decide.

Best wishes 

Karyn xx

Hi Karyn,

Wow, 9th June is a long time to wait. Let's hope it's because they're pretty sure there's nothing to worry about. That being said, it's too long for you to wait and worry. 

Thinking of you xx