my journey so far

Don’t worry too much Sue. My surgeon said that symptom led follow up only is the norm and regular CTs etc aren’t commonplace now as they don’t like to keep scanning us as it isn’t healthy for us … we had enough radiation exposure pre op with PET scans and CTs so now it’s only a case of when needed I think. Mart sounds like he’s doing brilliantly too and so just keep encouraging him and to enjoy life as we don’t go through surgery like or as major as that to come out the other side worrying. We have to seize and enjoy each day we wake up and get to plonk our two feet on the floor as we get out of bed !

Hi Milly,

I think a total gastrectomy is quite different to a STG in terms of life after the op, my understanding is that with an STG the patient is generally left with some stomach, how much depends on individual circumstances  and what is left can stretch in time and that allows for the larger portions to be consumed. With me they either left quite a bit of stomach or what they left was very stretchy lol.  I think with a full gastrectomy you aren't left with any stomach and they rewire your plumbing accordingly and I think in that case it is a matter of learning a new normal and getting used to the 6 meals a day. I met a guy at one of the support group meetings in Bradford who was 10 years post op (Full Gastrectomy) and he was living the 6 a day  life and getting plenty of variety and nutrition from it.  The B12 is,  I believe a similar story. I was put on B12 every 3 months but I was not feeling low energy and I play golf at least 3 times a week so I suggested to the nurse at my GPs that we do a blood test and if the level was OK no injection and then at the next three month another blood test and my readings have been fine without injections but this is an indication that the stomach I do have is managing to absorb sufficient B12 from the food I am eating, I think without any stomach that will not be possible so I think the B12 injections are likely to be very important for you. 6 weeks post op is still early Milly and I am sure you will pick up as you get used to the new regime, but do speak to your dietician if you haven't already, that is what they are they for.  All the best and keep in touch. 

Great to hear I’m not the only odd one! I’m obsessed with oranges and never ate fruit before, at all. Thank you for sharing.

Thank you so much, this information is very helpful. I can’t get an appointment with a nutritionist until October and that’s private! I think because physically I recovered so quick, I expect everything to be back to normal and the reality is I need to wake up and accept time will heal. I’m so grateful for all the advice as once you leave the hospital it’s adi-os for three months and I felt a little deserted! 

Great to hear you’re doing so well Mick! 
So dad and I went to see the anaesthetist today and it’s full steam ahead for the op a week today. Full removal but going in with ‘the robot?’ How long will dad be in theatre as I forgot to ask this? Dad is so fit and active but due to his age (79) they’ve said he will go in high dependency/ intensive care after op and I’m petrified by this. My dad has never been sick in his life so this is so difficult right now for him as in the midst of all this we’ve been going through a journey with mum and she’s just got out of hospital. 
Tomorrow he has an iron infusion? Anyone had this? Any support or advice would be so welcomed x

Dear Nat, my surgery was 5 hours but not robotic which can take longer. Where I live high dependency/ intermediate care is compulsory post op so I was  in high dependency for 5 days post op and it was great. There you receive 24 hour constant supervision and any minor issue,, because with major surgery there is a high possibility, can be dealt with instantly. This means a faster, more streamlined recovery. I hardly remember it as it goes so fast but I do remember my family and friends being shocked to see me with lines in my neck,nose, arms and nether regions! Again for me it was not memorable so I think it is worse for onlookers. I’m just over 6 weeks post op now and can hardly believe it’s all over with. Aside from the new plumbing adjustment, I’m doing great, back to work walking every day. I was told I might need an iron infusion post op as my iron was very low but they opted for tablets and I truly think the infusion is 100% better as it is all done in one day whereas I have two months of nausea and mixed other end issues due to the iron tablets and I hate them. I, too, have never been I’ll before and my poor children took it badly. Even now when I call to say hi they panic and ask if everything is ok. It is a shock but there is also great possibilities of a full recovery and it brought my family even closer than before. Getting to the operation stage is a huge positive milestone. Look forward to hearing your family’s journey and we are all hear for an ear to bend if you need it. Milly

Hi Nat,

Like Milly my op took 5 hours but again was not robotic, here in Nottingham following your op you go onto high dependency also but only until all looks well where you then go onto a ward. I was only on high dependency for 1 night. My stay in hospital was for 7 days as all went well, I do believe it's harder on family members as Milly mentioned, they get to see and hear very little about what's happening at the time. My wife was very supportive and that's all I needed to speed up my recovery.

Hope all goes well with this stage of your dad's journey. Mick x

Hi Nat,  My husband was in the same hospital as Mick and followed the same path, he had all his stomach out in Jan, he like your dad was also 79 at the time of the operation. He did very well as I’m sure your dad will. Xx

Dearest  Mick, Milly and Sue, 

I can’t thank you all enough for your words of support and encouragement. This means so much, we are all on the countdown to Thursday and praying it all goes well. 
Hope you’re all having a lovely weekend xx

Dear Nat, thinking of you and your family and hope to give inspiration that we are fresh out the other end and so relieved to be moaning about new plumbing systems, bowel movements ,or lack of, and weight loss BUT feeling so very grateful to be here. Chat anytime. Milly