Hello Sisters, hope you're keeping well.
This week, my PET-CT confirmed that a couple of lymphnodes have decided to join the party. Not the news I wanted to hear but I'm now one step closer to starting treatment. Met with the chemo and radiotherapy teams yesterday to discuss the treatment -- received SO much information that my brain still feels frazzled.
While I'm trying to keep the worrying about which stage I'm in to a minimum, I won't lie. It bleeping sucks. I would write other things but I have a feeling I'd be flagged for my choice of words. I feels like someone has given me a big rucksack filled wiith stones to carry on this mountain hike I'm on. I'm still on the path, but it's just a wee bit heavier and more challenging...
Now I'm waiting to hear on when I'll have my planning CT and when treatment can start.
For those who have been through chemoradiation. What did you put in your chemobag? And which cream did you use post radiation?
Oh Eire thats awful news for you getting a higher stage.
But we’ve had a number of women at stage 3 (I’m presuming with a couple of lymphnodes you are 3C1 or 2- forgive me if I’m wrong) come through the group having had successful chemorad treatment so I hope some of them will add to your post. The stage 2b ladies, like myself, have also been through it.
The chemo days are long..I took my phone with a long charger, snacks, headphones, and a book-which I never read! I had my partner with me, so we chatted a lot and talked to the lady and her family sitting next to me. Warm socks-I went through treatment in November, and often people take a small blanket, though I didn’t need one.
You need to drink a lot of water to flush through the chemo-you should be given this-but you may want to take other drinks with you. My hospital provided tea and coffee and lunch.
Post radiation treatments I used simple aquaphor cream prescribed by the hospital. You need to be careful with what cream you use, if you need it, due to the ingredients, so I’d always check with your team on what is suitable. I found the effects of radiation to be cumulative so didn’t use anything in the first 2 weeks, but needed to start in week 3.
You need to be told of all the potential side effects of both treatment so you can give informed consent, but it doesn’t mean you will have all or any of them. Some ladies have none. I had cystitis and diarrhoea, both of which are fairly common, but they subsided soon after treatment ended, and at the end of treatment I was prescribed a stronger cream which was very helpful.
My advice would be not to focus on the stage number. It’s just a number. Focus instead on getting through each day and counting these treatments off. It’s an intense schedule but you can get through it, challenging though it is.
Ask any questions you need to in the group-we have a lot of experience of treatment and will be happy to share tips which helped us through.
Sarah xx
Hi Vanderstadt
Some of us had very bad radiation cystitis, so needed cream for that.
Great to hear you’ve had good results on your post treatment scans, and don’t seem to have suffered side effects.
Sarah xx
