New here, new to cancer

Hi Wavedancer,

So good to hear that you finally have a plan and a hopefully better pain management plan. Everything crossed that this works for you and brings you some relief.

Sounds like you’ve absolutely been through the mill recently with 4 biopsies and hope very much that the breast concerns are pockets of silicone. Such an anxious time for you 

The MacMillan nurses are brilliant and hopefully you can reach out to them for anything. I didn’t contact them much but when I did they were so helpful.

 Keep us posted if you are up to it and wishing for a more comfortable weekend for you.

Sending hugs xx

Hi SadieW,

Your journey to diagnosis sounds utterly exhausting and distressing. I am so sorry that you have had to go through so much for so long and been bounced around between departments. 

I can absolutely understand your sense of relief at finally getting a diagnosis even though of course it’s not what you want to hear. At least now you can have treatment 

It sounds like you are a strong person im not giving up with this despite the endless challenges you have faced over the last 4 years. 

Well done in finally getting this far and wishing you well for the next steps xx

Hello Wavedancer

You have such a lot going on and I am thinking of you and hoping that the scans show there is nothing untoward in your breasts.  And truly, once treatment starts you will feel a lot more in control of what is happening.  I am pleased that they are pulling out all the stops to control your pain in the meantime.  And be very kind to yourself and don't worry about the things you can't do right now - you will do, but not just yet.

Please let us know when your treatment is due to start, we have lots of coping strategies to share (if you haven't already seen them).

Gentle hug

Irene xx

Hello SadieW

A warm welcome to the forum, although I am sorry to hear of your (eventual) diagnosis.  I am truly taken aback by your experience and what you have been through.  I don't know where you are being treated but I don't think I would let this rest.

But you have the next few months to get through, and I can understand your feelings of vindication after all this time.  The treatment is tough but we have all been through it and are here to tell the tale.  There are many on here who have finished treatment and stayed around to help others navigate this path.

I had secondaries at diagnosis and had six cycles of chemo first and I tolerated that well.  I had Carboplatin/Paclitaxol (the accepted regimen to control spread) and lost my hair but I found an Etsy seller who made me chemo caps to match my clothes - happy to give a link if this is the chemo you are having afterwards.

If you are familiar with the forum you will have read the 'shopping list' of essentials during the first part of your treatment, if not please let me know, and I will provide a link (I am typing this in a huge rush but will be back later!)

Big hug

Irene xx

Hi Irene, thank you. I’ve not read the ‘shopping list’ of essentials…so when you get a minute do pop the link on - it’ll definitely be interesting to read it. I’m supposedly having Capox for my follow up Chemo later in the summer but haven’t been told yet about hair loss with that or not. I was told I probably wouldn’t experience it with the Chemoradiotherapy though. There’s so much info it’s wonderful.  to you. Sadie x

Thank you for your lovely words and wishes PEB24. It’s certainly good to be moving forward. Hugs to you xx

Thank you so very much. The MacMillan nurses have gone above and beyond. Nothing is too small, and they are right on top of it, especially when my GP needed a bit of a push! He called me afterwards and said he was there for me no matter what! That was so unlike him, so they must've given him a big push!

I've been sleeping a lot lately, but I think it's my body trying to get used to all the Oxycodone in my system. I was pondering, "What if I sleep for the next six months and wake up, and it's all gone!?" Wouldn't that be brilliant?

Anyway, you have ALL been so very kind and supportive on this forum. I feel very blessed to have been directed here.  Thank you

My 'haemorrhoids' diagnosis was 'confirmed' by 2 other GPs and 2 colorectal radiographers, and I fumed about that for quite a while. My husband was livid. But I realized that I could do nothing about what's gone downstream now... I can only build a stronger raft and surround myself with an excellent crew for the rapids ahead. I like that analogy and hope it may help someone else reading this now. My best friend, a lovely soul and grief counsellor, passed it to me. I met her when I started designing for her organization, which helps cancer patients. Now, 20 years on, I'm also one of her clients.

It seems we're on this raft together. I think you'll be grand company.

Sadie, a member of the forum who has just been through treatment made a list (thank youHonkingGoose!) 

 RE: Chemoradiation shopping review 

I would also add to that a Sitzbath - I couldn't have done without mine, they are very cheap on Amazon and can be used even for bowel movements under water (somehow less painful).

Capox is on of the chemos that doesn't cause hair loss, maybe a small amount but not total.

Anything else you need to know, just shout out!

Irene xx

Irene thank you so very much for the link to an amazing list.   And good news re Capox  xx