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Happy to have found you

5 REPLIES 5
Evie-S
Community Champion

Re: Happy to have found you

@fizz - thanks for your kind reply. Good news that you managed to visit your friend and overcame any worries and fears about doing it - and of course that you had a good time. It really is a case of taking one day at a time and adapting things if necessary to work for you - like staying the night to avoid 2 long drives. I would have liked to use the phrase “new normal” but as @Jaybro has said previously the government has stolen this phrase when talking about the pandemic!

Evie xx

fizz
Member

Re: Happy to have found you

Thank you for the welcome 

Evie - I read that article you posted and it’s so helpful. Really describes how I’ve been feeling. I did sleep better and then I went to visit a friend I haven’t seen since before the pandemic. I was worried about driving long distances because of fatigue and the arm and shoulder pain but I took a big break on the journey and asked her to stay overnight so I didn’t have to do the journey both ways in one day. It has really helped to do something I would’ve done pre cancer. 

Jaybro- thank you for sharing your experiences on the self service chemo. Glad you have been tolerating it well and it’s having a positive effect. I’ve been really nervous about starting it. Partly because I’m historically bad at swallowing pills and partly because I’m worried about side effects. 

thanks again to all for your lovely warm welcome. 

fizz xx

Bernard_BCN
Community Manager

Re: Happy to have found you

Hi @fizz, we're glad you found us. I hope the Forum can continue being a source of support and kindness for you.

Our team of moderators is here if you ever need to ask anything about the Forum, and we have boards for people's questions to our team of breast care nurses too.

Sending our warmest wishes

Bernard

Jaybro
Member

Re: Happy to have found you

Hi fizz

I didn’t find this site till I’d finished treatment. I wish I’d found it earlier as it’s so full of warm support and the wisdom that only comes from experience.  Anyway, welcome.

I too have TNBC (I didn’t know till a few weeks ago and my surgery and treatment were 2018-19. Basically I didn’t want to know and trusted my team to sort it all out. Sounds a bit like you, so you aren’t alone). TN is harder to treat but it doesn’t mean it’s untreatable. After 4 cycles of cape, my blood markers had dropped from 128 to 26. I call that a result. They’ve dropped further to 23 and my body has adapted to the drug so I no longer feel like a zombie and the fatigue hits less often. I’m mid-cycle 7 but I need to take it indefinitely, for as long as it works. Fingers crossed.

I hope cape does the trick. I call it DIY chemo because they deliver your 2 week supply of tablets, then you have to organise your life round the 12 hour cycles. I’d much prefer an IV than think about taking 18 tablets a day (I can’t manage the 500mg tablets so I get it all in the 150mgs!). You do get a week off but it seems to works hardest during that time so it’s not a break. Then you have a face to face consultation and blood tests for the pharmacist to calibrate your next dose. On the positive side, I feel almost ‘normal’ now and the results have been really encouraging. Meantime, ask about trials you might participate in. There are a couple of TNBC drugs waiting to be licensed and I know of one woman whose MP is going to ask on her behalf why one drug is being delayed when the manufacturer has offered it for free till it’s licensed. So, looks like more opportunities are coming our way if cape lets us down.

Jan x

Evie-S
Community Champion

Re: Happy to have found you

Hi @fizz - a big welcome to this lovely forum, it’s really good that you are finding it so supportive. You make a good point about being fearful that you might read something that might scare you - but like you have already found out, everyone on here just “gets it”, and understands how to explain things without causing more worry. I had never used a forum before I found this one during my treatment about 4 years ago, and it helped me so much.

Don’t kick yourself for not joining in sooner. Everyone handles diagnosis and treatment their own way, and your way was right for you then. While going through treatment and having endless medical appointments, for many people the best way is to put themselves in the hands of their team. However when treatment ends is a time when people can feel lost and alone - I’m going to attach an article I wonder if you have already seen by Peter Harvey: 

http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what...

Jot down your questions on here, or if it’s a medical question you can always call the lovely nurses on here (number at the top of the page), or message them via the forum board (let me know if you need any help finding anything on here). No question is too big or too small.

Sending you big hugs and hope that you managed to get some sleep last night. Evie xx

fizz
Member

Happy to have found you

Hi 

I have had my head down just trying to get to the end and get ‘back to normal’ since discovering the lump a year ago. I was diagnosed with TNBC and have had chemo, lumpectomy and recently finished rads. I’m due to go on capecitabine (I think) soon. 8 cycles. 
I’ve not googled much or gone to any support groups because I just didn’t want it to be happening. I just put myself in the medical team’s hands and tried to ride it out. 

That was until last week when I haven’t slept and just constantly worry and have had so many questions. I’ve had spells like this before but they usually pass or I distract myself somehow. Anyway I found these forums and have read so many posts and it’s been so helpful. I don’t feel alone and many of the things I’ve experienced others have too. I was scared to read forums or meet others with breast cancer in case I heard things that made me more anxious but it’s had the opposite effect and I’m kicking myself for not connecting with others earlier. I have lovely family support but it’s so different to hear from others who really understand what you are going through. 

Just wanted to say hi and that I’m so glad you are all here. Maybe I will sleep better tonight.