In shock

Hi Governor,

Good to hear your wife’s recovery is going well My tummy was swollen for a while and I was covered in bruises for weeks from the injections!

Life is slowly returning to what it was but still waiting for my post-op check with the surgeon… should have been at 6 weeks, I’m now 8 weeks post-op and it’s not until mid Aug… hey ho! 

Meanwhile, the stoma has decided to have a mind of its own and I’m not sleeping well and also, can’t face alcohol yet… don’t know which is worse?!

AlbaH

Sorry Governor, just seen this after my last reply…

Absolutely fantastic news!!!! So pleased and relieved for you both!!! 

Xx

Hi Kelster,

Glad your treatment is underway, hang in there, the side effects can be tough but don’t be afraid to speak up and let your team know.  I had IV Folfox for the chemo part of my treatment, 2 weekly cycle, and I really struggled with fatigue and pressure sores, but the oncologist was really good at listening and making adjustments where he could. 

Take care! 

AlbaH

Hi. So sorry you’re having to wait that bit longer. I’d be chomping at the bit with the alcohol!! Hope things improve with the stoma . Hang in there.

I’ve spoken to my team and they’re continuing with same dose etc. she’s amazed that all my symptoms have gone after one cycle and she said she thinks it’s shrunk so all good. My main side defects are instant pins and needles during IV along with dizziness and cramps when I can’t walk. The nurses have never seen so instant or the side effects I have. It goes after a few days. Fatigue isn’t too bad this time but pins and needles and cramp are worse. I’m low on phosphate so back to the drinks 3 times a day which are disgusting! All in all not to bad and am hopeful that it’s smashing the big C already. Keep us updated

Great news! So pleased! Now to start living life again. Lovely news x

Hi Governor

Just a check-in & hope all is continuing to go well! 

AlbaH

I was thinking about you earlier! She's doing well, still a bit of a slave to her bowels but it'll take time, we see the surgeon on the 2nd September which I assume will be just him signing her off.

She's up and about much more doing most of the things she used to around the house, still a little sore at times but I'm sure that will fade away

How are you getting on? Any sign of your reversal date yet?

Sounds like your wife’s recovery is going well, really pleased to hear that she’s up & about and doing some ‘typical’ stuff!  Hope the soreness ease though. I’m doing ok, strength & stamina returning and trying to do ‘normal’ things whenever possible!! 

My appt with the surgeon should have been 6 weeks post-op but has been delayed to 11 weeks… I see her next week! After that I’ll have a scan to check the join and then she’ll decide if the reversal can go ahead… at this rate, I can see it being the 12 months wait post-op that she mentioned on discharge!! 

Had my CEA results this week & ‘within normal limits’ … next one in Dec  

Hope you both get to enjoy some of the summer!

AlbaH

Hopefully your scan shows good healing, I imagine you're really keen to get the reversal done, I think not having the stoma has really helped my wife's recovery 

Are you on 3 monthly CEA's? I think that's what they said is our next step

Really glad you're first really was a good one,  long may it continue

I can remember you saying your wife was anxious about having a stoma. I asked if mine could be reversed at the time of the op and resection but was told no.

I’m keen to have the reversal - it was the first part of my treatment plan to help the bowel rest because of the position of the tumour - but now it’s removed, it will feel like the end of the treatment to have the stoma reversed!

But I’m also aware it might not be possible. Or that my bowels might go haywire and I regret the reversal. Argghh!!!! Any advice???? 

The next CEA will be 6months post-op so probably the same time frame you’ve been told. I got the result on my birthday which was an added bonus! 

AlbaH