Last Flot tomorrow, CT scan on the 1st Feb

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Hello 

I have my last FLOT tomorrow, 4 in all, I have also have 2 rounds of Carbo and Etoposide. I have my CT scan on the 1st Feb as they plan is to operate so I have fingers and toes crossed they I will still be on this pathway.

The Flot has been tough as people say, the Oxy-legs were terrible!! the two week turn around has given me about 3 days of normality. I would like to thank those that offered side effect advice as it really helped me to be proactive with the Meds.

The change for me is  from Oct to early December I was not able to eat food, shakes only. I am now eating normally, I have attempted spicy food, like a curry Heart eyes. I find I need to eat more often or I get like an empty discomfort, not sure what that's about?  My sternum feels sore sometimes also? fingers crossed these are gastral related to the growth but I guess it must of shrunk as I can eat.Grinning

I am so looking forward to some weeks without Chemo but also apprehensive, it will be back to that waiting place, and this is it, which pathway? I wish I had not been told IT was high grade, this bit really sticks in my head!!Fingers crossed

What lovely blue skies I have in the south at the moment, beautiful Sunny

  • Morning Dibden doll

    I had to go on the liver shrink diet , if you like milk(semi skimmed) and low fat yogurt you’ll be fine although you can’t eat anything else and for two weeks it’s hard. My surgeon told me if I stuck to the diet it make the surgery a lot easier.

    Hope this helps best wishes

    Alasdair

  • Good morning Jennie,Vonn/Andy,CB and everyone else that’s awake at this hour 

    Its all been rather quiet on this particular part of the forum and I was just wondering if everyone is OK and coping with our new style of life

    I’m still trying to get a good nights sleep as the reflux continues most nights with occasional bouts of dumping after trying to be “normal” and eating too much, I know self inflicted 

    I’ve now got my date for returning to work on a phased return I have to say I’m feeling a little apprehensive as I believe I’ve become complaisant with my current lifestyle but now it’s time to move on. Is this a normal feeling after being off for so long? I remember speaking to the surgeon post surgery and he said 12 to 18 months post surgery before I should entertain returning to work, I think I’m doing the right thing, I know it’s only been 9 months since I had my surgery, is it too soon? The CNS team have said only I will know when the time is right but in their eyes I’m certainly fit enough to return 

    Does anyone know how Dean is doing? I really miss the conversations we had with him and hope where ever he is that he’s comfortable 

    As always I look forward to your replies and wish you all best wishes

    Alasdair

  • Hello Alasdair 

    Sorry about the continued problems at night but it's good to read you're at a point in recovery where you are deemed well enough to return to work, if that's what you want. 

    I would say that mist people who have had a long period of absence from work experience some trepidation about going back. In my case it was after maternity leave and I was only off for 3 or 4 months. Other women who take the full 12 months plus often feel they've forgotten everything and lack confidence.

    I hope you continue to progress.

    Lorraine 

  • Hi alasdair, totally get what you say about going back to work, with loo issues etc as well in the mix, i feel so bad as i was off with my breast cancer/masectomy issue, until july 2024, then this little so and so popped its ugly head up July 2024, so have been signed off consistently, op was only 8th jan, but feeling bad about being off and the thought of re training etc as Lozza said, and if their is a postion for me,  been signed off until end of feb, but still so sore and ache so husband isnt keen for me to rush back, will have to have the work conversation with them next month i think, bills still need paying and they have been so good,  but like husband said its a massive op you just got through, not a cold!!, just hope there is something else i can do possibly.  this whole eating lark after the op, god what a roller coaster, some days i think i have done well, then dumping hits, still on 1500 calories a day via feed pump as still only 6 stone 13, cant see how withouth the feed and eating only little and ofter how on earth i would maintain my weight , such a learning curve.  thank you for your update

    jules

  • Hi Alasdair,

    Sorry to hear you are still being plagued by reflux. I still get it too every so often but not as regularly as you are suffering it. Usually when I've eaten too late, too much or something too rich. I've been away from this forum for a while as I've felt a bit guilty doing reasonably well when so many others are struggling and going through terrible times. I am currently in Coquimbo, Chile on the big cruise that my wife and I booked just 2 days before I started my pre-op chemo in December 2023. Seems like ages ago now and there have been many times over the last year when I wondered what madness possessed me to do so with everything I had ahead of me in 2024. My wife thought I was nuts at the time but was afraid to say so in case it made me think that she thought I wouldn't make it. Looking forward to this experience of a lifetime helped keep me going through the dark & difficult days (and we both know that there are many of those on this journey) But here we are, ready to enjoy the next 30 nights cruising back to Southampton. Hope things improve for you soon. Best wishes CB

    Cool Blue

  • cool blue, enjoy, what a journey, there deffo needs to be something to aim for, hopefully you are enjoying some sun, peeing down here in the uk.

    and thank you for popping back in, your advise pre op and what to expect was so important, at some point we wont want to look back on the last year, but all of the heads up you gave us was so true, and helped so much.

    this new eating lark isnt a walk in the park, and i too got a bit too cocky, and boy did i suffer so now going back to the drawing board, but to finally see the disapearance of the blue amazon sick bags, miracle. and thank you again when you said recovery after the op is brutal, that is so true, so after the odd check in with the team at churchill, has made me not panic so much at the aches and pains i am getting.

    enjoy that break, and thank you

    jules

  • Hi CB

    I really hope your enjoying your trip of a lifetime you certainly deserve it 

    I spoke with the CNS team yesterday and they’ve now decided I should stay on the increased dose of omepraxole for the next two weeks then reduce if back to the normal dose and wait to see if the reflux returns, if not I’m cured, if it does return then it’s time for another endoscopy (yuk) as they’re leaning towards eosophagitus ( inflammation of what’s left in there) 

    So by the time you get back to Southampton I’ll know what’s happening 

    Best wishes

    Alasdair

  • Just wanted to say, CB, you should never feel guilty about your recovery. I think we all appreciate reading about everyone's highs to help balance out the lows. I know I do. I'm so glad you finally got to go on that cruise. Enjoy every single moment! 

    Best wishes,

    Lorraine

  • Morning CB

    What a wonderful experience for you and your wife x enjoy every minute you certainly deserve this trip.

    Best wishes 

    Vonn and Andy 

    Xx

  • Good morning Alistair 

    Pleased to hear that you're getting help with the reflux problem I hope the omeprazole works for you .

    Andy is doing well,  still gets lots of dumping but considering where he was 12 months ago we feel blessed. He's still working 2 six hour shifts a week  not quite ready to increase the hours yet.

    Have you returned to work now?

    Take care Alistair 

    Best wishes 

    Vonn and Andy 

    X