Scared stiff

Hi AlyJ and a warm welcome to the bowel board. I’m so sorry to hear of your losses over the last 2 years and then the added diagnosis for yourself.

I’ll be honest - 18 out of 19 lymph nodes is a lot and I’m struggling to understand why you would refuse chemo? Capox can be tough but it’s also doable as many of us on here have proved. Yes there can be a lot of side effects but there are also a lot of pills and potions to combat them. I had 8 fortnightly cycles of Capox - the dosage was reduced after 3 cycles due to low white cell count and then the oxaliplatin was stopped after 6 due to a numb tongue. I had a further 2 cycles on capecitabine only and was stopped before the final one due to peripheral neuropathy in my feet. I worked part-time in an office throughout apart from my iv day. 
You say you don’t want your kids to have more worry but they’ll still worry if you don’t have the chemo? 
If there’s a particular aspect of Capox that you’re worried about then please ask and we’ll give you honest answers from experience.

Hope my post hasn’t come over harsh - that’s honestly not my intention - but I remember my friend saying to ‘throw everything they offer you at it’ and it seems to have worked so far.

Take care

Karen x

Bless you Karen for your reply. I’m just shell shocked I think and my colorectal nurse was in tears on the phone which didn’t help!

I guess I’m just looking at 8 months of bleugh with not great odds at the end of it. I need my hands as I work standing & injecting all day every day. 
I’m teetotal, vegan and holistic so I suppose it’s a weighing up of stats for me. I see the Oncologist on the 30th.

You are amazing and I respect your strength and attitude, your response is honest but very uplifting. I hadn’t heard of anyone having 8 cycles so, I guess I can do it!

Thank you,

Aly xx

Hi AlyJ 

Just want to send you some support as I understand being a medical family it feels as there is no where to hide from the reality at times .

Things were a bit different from my mum as it had already set up camp in my mum’s liver at diagnosis although her lymph nodes were actually free from cancer after surgery to remove her bowel tumour .

My friends daughter found a breast tumour . It turned out she had nineteen tumours in the one breast and to complicate matters they  were not even the same cell type but grew rapidly  . Despite it all she never recurred.  

 My mum has had a spread to both her liver and lungs and believe me I wish she it was not the case but her team have been absolutely wonderfully over the last fifteen years . So many good times as a family and robust scanning really was a life safer . Age and frailty has stopped treatment .

I am so sorry for the pain you have gone through and especially losing your son and I totally understand why you feel this is an uphill battle.  As a daughter and it’s probably unfair of me to say this but I am so grateful my mum took treatment and helped me raise my kids . They adore her and all four grandkids are just wonderful with her .

My mum really struggled initially taking chemo as she always looked after her health and it was a hurdle for her . I get that .

If we can be of any help to you whatever your decision please do say . We totally respect that .

take care ,

Court 

Hi AlyJ,

Think you’ve broken my ‘record’! I had 22 out 31 cancerous lymph nodes but not having chemotherapy never crossed my mind. If you read my profile you’ll see my chemo was pretty tough but even with hindsight I would have still had it as there always a chance it will swing the odds in your favour.

Good luck with whatever decision you make.

Maninbath

Thank you so much for taking the time to reply to me, I do appreciate it. I will go and have a read. 

Dear Court, what a beautiful email of insight and support, thank you. I see the Oncologist on the 30th and will listen to all she has to say.  I’m a teetotal, nonsmoking, fit and healthy vegan and the thought of pouring toxins into my body for ‘a chance’ of a bit longer just sounds awful.

I will weigh it all up carefully once I’ve had a face to face chat and not just a bombshell dropped over the phone.

love to you and Mum & your family, bless you x