ps sue I think if I was offered Cape now I would accept it because It would be something else zapping any cells wanting to multiply xx

Hi Linda,

I would too if it wasn't for the coronavirus. My oncologist said if I catch the virus whilst on the tablets, it would be really serious as I probably wouldn't survive. That's why the decision is so hard. 

On a positive note, I've read lots of stories of people living healthy lives years after being diagnosed with triple negative. My friend works with a lady who has just passed 5years since diagnosis and went on to conceive naturally. She was due to start IVF treatment so was gobsmacked when she found out she was pregnant. Good news stories are rarely published, it's always doom and gloom.

Xxx

I hope you dont mind me asking Sue but do you have any other health conditions? It would mean more isolation for you. I had an update from the CEO yesterday about guidelines from Boris n co and it says extremely vulnerable will.be shielding beyond June x

Hi Linda,

No I've always been really healthy which is why I was so stunned to be diagnosed with cancer. I only felt really ill whilst on Chemo. That said, I didn't suffer as much as a lot of people. Also, I haven't had any reaction to the radiotherapy. No redness or soreness so I was worried the radiotherapy hasn't worked. I've been assured that isn't the case.

Xxx

well i dont know if this will help but I know someone who is still having  chemo and tested positive, shes how fine and actually had another chemo last week. I think if you shield while on it you would be ok, it's just the not seeing people though isnt it xx

Hi Linda,

It's so difficult to know what to do. If I new it would definitely benifit me then it would be a no brainer. As it is, it may or may not be of benifit. I would have it in a heart beat if I knew it would help. The specialist's can't even agree so it's impossible to know what to do.

Xxx

Hi Sue

I get exactly where you're coming from, they must have some idea if it helps people otherwise it's a waste of time. Go with your gut instinct x

Sue go with how you feel on the day, try not to worry about it as like you say at the end of the day its your decision xx

Hi Sue

We have chatted in the past when you were having your chemo and experiencing some distress with hair loss etc.

I hope some of the effects of the chemo have worn off now but I know it can take a long while to be free of some of these aches and pains.

My legs and back still ache after 14 months post chemo.

I hope your hair is growing back nicely now.

My lashes and brows are very sparse but my hair thicker than before and curly!

Regarding the reoccurrence fear,  I think that is something we all have to learn to live with and I myself am still finding that aspect very hard even though my surgery was a year ago now.

With regard to the oral chemo drug you mention, I have read various studies where they have reported an 8% increased survival rate so that's something to think about but as you say the side effects as you were told can be pretty horrendous and that has to be weighed up with quality of life etc.

With regards to the Covid risk with compromised immunity from the drugs I think if you decided to go ahead with it you would have to shield yourself for longer and find out how long the course of chemo would be for.

I myself feel like my journey is never ending and still wake up each day with c being my first thought!

I had my first mammogram yesterday, a year after my surgery plus because I am Brca1 I had to have an MRI too.

It was an awful time and I relived all of my fears from last year and would never have gotten through without Diazepam.

I now have an anxious wait for the results and have 2 further surgeries to get through this year both of which are for preventative reasons because of Brca, my Oophorectomy in June and double mastectomy with reconstruction in August hopefully.

Just try and live from day to day Sue is my best advice and if that gets too much from hour to hour and keep busy trying to do things you enjoy which I know is doubly hard during this pandemic.

Take care

Karyn x