Gosh - I posted the following in the wrong chat:

Hello to fellow rollercoaster riders,

I’m still chugging along – but more of me later!

JaeInKent – hope you are coming out of the feeling like youknowwhat for the first week after chemo.  Glad that you are not on the new-age food anymore – it feels like a bit of a free pass for me at the moment, eating what I want, and the missus keeps threatening to remove it and get me eating “sensibly” again as my weight is relatively stable.

leechap – great news on the shrinkage.  Loss of appetite is a big problem – certainly in the months post op it almost seemed to be the teams biggest concern that I didn’t lose too much weight as it leads to other problems on vitamin and mineral deficiencies. Even now, I enjoy eating mostly and have gotten into a routine for eating – but if I don’t eat, I don’t miss it (I don’t get the rampaging hunger that I used to get). I too was given a sample pack of the Aymes – with a view to getting them on prescription.  A couple of them were palatable for me (vanilla being 1 and chocolate being the other), but the rest……..  Fortunately, I ate food so didn’t need them.

Milly – what are you trying to do to us?  Hope your ankle is improving!  I bet that big boot is fun – gosh, I wonder if they do a boot for me if anything happened to my ankle – best not find out. Delighted to hear about hubby too – I was the same on the 2nd round of chemo, right of food for a few days and then picked up afterwards ready for the next bout.  The dumping syndrome is odd – I found when I understood the dynamics of why it happens quite interesting

“Early dumping syndrome can occur because of the dense mass of food that gets dumped into your small intestine at an earlier stage of digestion. The intestines sense that this food mass is too concentrated and release gut hormones. Your body reacts by shifting fluid circulating in your bloodstream to the inside of your intestine. As a result, your intestines become fuller and bloated. Diarrhoea often occurs 30 to 60 minutes later. In addition, certain substances are released by your intestine that affect heart rate and often blood pressure, causing many of the symptoms of early dumping. This can lead to lightheadedness or even fainting.

Symptoms of late dumping happen because of a decrease in blood sugar level (reactive hypoglycemia). Reactive hypoglycemia is low blood sugar caused 1 to 3 hours after a large surge of insulin. You are more likely to have dumping syndrome if you eat a meal heavy in starches or sugars. The sugars can be either fructose or table sugar (sucrose). Insulin levels can increase to high levels, and then lower your blood sugar too much.”

I tend to get “late” syndrome, but not all the time.  I had chocolate cake (that was almost pure chocolate) at a restaurant on Saturday without any problems and again for 11’s this morning.  Last weekend I had a problem after a beer and a few crisps, so go figure.  It has certainly eased off since the early days post-op.  I have mixed fruit muesli for breakfast every day – and have yet to have a problem post that.  If I get it, it’s usually either mid-afternoon or late evening.  And sometimes, I can just rest when I get the palpitations and sweats, and it just eases off.

And congrats on the anniversary! 

My news is that my partner and I got hitched last October after 33 ½ years together and have only just told our friends (hence a party on Saturday).

Tabnabs – great news on the progress and congrats to your son – 1st class! 

Hilts – holidays in the Sun, weekend in the big smoke!  What’s it like? I don't know what to suggest for your hubby.  I've settled around 118kg, and have also lost a lot of muscle definition - certainly the legs are skiinnier (born out by the skinny fit jeans I've just bought).  I've started working out again, but its slow progress.  I will hopefully be building up the stamina over the coming weeks and will get advise from the missus on how things are looking.

Walter-Mc – it’s interesting that your reflux tends to happen 12 – 5.  How does it tie in with the eating?  Do you eat differently for breakfast/lunch/dinner?  Trying to find a pattern to what works and doesn’t is a challenge and google can come up with multiple answers – go for a walk after eating to let gravity do it’s thing and have a lie down after eating to slow down the movement of food through the stomach (mind you this is post-op).  I guess it’s a case of working out any patterns and trying different things both food wise and movement wise to see what works for you.

Apart from that – I am now 5 ½ months post op and 2 months post final cycle of chemo.  All good – I still have not managed 4 pts yet.

Cheers all. 

bfg

Hi Hills x 

tips for putting on the calories if using the Aymes actasolve savoury powder soup and Fortijuice drinks prescribed under NHS.

I think these tips may be out there already but.....

Aymes says add something like 200ml boiling water. The soup is both very thick and powdery and not at all tasty. So what I do is use a 500ml cup and add the portion of Aymes plus a much more tasty packet powder soup from our supermarket. (Not allowed to advertise names) Mix the two powders together then fill the 500ml cup up to the top with boiling water. Stir a lot and the water volume sinks a little, only then does it become a tasty drink plus you get more liquid intake from one drink. The other bonus is that with so much boiling water it takes ages to cool down to an undrinkeable temperature and can be sipped easily over a longer period.

My  friendly pharmacy unfortunately supplied 120 bottles of strawberry flavoured Fortijuice instead of mixed flavours. After a couple of bottles I couldn't stand it anymore because even as juice it is extremely powdery, and the only suggestion the upper IG team dietician would make was turn the 120 bottles into a jelly ( 1 year supply of strawberry jelly - I don't think so). So the trick is to get 2 bottles into one drinking flask topped up with water to heavily dilute and which removed the powder taste. I take the flask on long walks or even sip away at home, so again both more liquid and balanced nutrition with energy. 
 

I think these tips may apply to post op patients as well as myself in pre op chemo. 

Walter Mc 

From Walter mc

i will "digest" your dumping explanation over time. It was seemingly very comprehensive.
about the drinking bit. I love a whisky and occasional beer and wine, but because I am doing chemo I have 1" of unfinished whisky left in the bottle. It has been sitting there for 4 weeks.Before cancer I didn't buy whisky very often because it would get finished within 5 days. So now I have utter painful abstinence and am highly jealous of your beer drinking ! 
good to hear you getting on fine. Cheers !

walter Mc

Hi Hilts and all,

It's been busy on here lol. Hilts so good to hear that you're getting to do normal things. As you know we are nearly 10 months and still going so hoping we can soon be out and about. 2nd cycle of post op chemo is this Friday. Your husband is an inspiration and very lucky to have had all keyhole as it doesn't appear to be common? Same op inside I know. . It was very unfortunate that Kev had to be opened back up after having keyhole on his abdomen but he's here!  Two stones lighter and trying hard not to loose any more weight. Going to buy cream cakes today! 

I get what you mean about 'jinxing' when life becomes so uncertain you feel you  can't 'assume'.

I have mentioned this before but just in case it's 'got lost' in the threads my husband has found the electric bed really helpful. I have too as I've been able to elevate my leg! Great for a cuppa too! We chose a super king (independent singles) so single bottom sheets but the rest super king  bedding.  You get VAT off for health reasons. We got ours from a local shop and it was made in Rotherham. I would suggest if anyone decides to look into buying one be a bit careful as some who come to your house can be very expensive. Anyhows we need to find an alternative for when we go away. I've looked at inflatteable wedges - has anyone used these?

Keeping the faith

Milly
 

Hi All,

so good to hear from everyone, Walter Mc, I'm afraid I haven't much advice re the reflux situation, mine was only ever bad enough to take one omepresole, and really only when I knew I may be having rich food that day, I guess it's just trial and error til you get the balance right.

Milly hopefully your foot is healing nicely, my friend broke her arm falling over one of her cats, she said the worst thing was wearing a caste in the summer!

Hilts, as Milly said your hb, really is an inspiration, hope I do half as well as him.

Bfg, thanks for the explanation on the 'dumping'  sure going to look forward to that, lol.

Had daughter number 1's wedding reception at the weekend, proud to say that I managed to bust quite a few shapes on the old dance floor! 
In the meantime I have a scan on Thursday to see how the ablation went, still waiting to hear about a date for the big one. Also having hellish back pain in my left shoulder, so panicking that it's spread to my left lung, aaarg! 
light and love to all, keeping the faith always

Hi Hilts

I'm going to have to remember that one - "excercise is unlikely to help......".    :-)

It'll be the 'only' thing that will help to build muscle back up - a case of use it or lose it - but what I'd suggest rather than cardio-vascular type excercise is some resistance training.  There are some really usefull elasticated bands you can get that wrap around the ankles, legs etc that provide a really good muscle-based workout.  You just need to be careful with them (check it out on the well known video channel) that they don't fall off and snap back as it were...    Looks like he is well into the protein, so that again is good muscle food.

The comment I made about dumping is a cut-and-paste from a medical website - and it contained, what for me was a good explanation that fits with my particular pattern of symptoms.  It may not help everybody.

cheers all

bfg

Hi Tabnabs and all,

Great to hear that you had a good dance at your daughters wedding - must have felt amazing! 
It's hard waiting and understandable when you get pains to be worried. My husband had back pain then we realised it was from the injections they give you to do for a week. You are doing so well - good you've had some very nice distractions.

My husband has been taking part in NHS exercises through zoom before op and is hoping to re-zoom lol soon. Good idea re bands Bfg. We are both members of our local gym (I do more swimming) and classes but with COVID and the diagnosis it's on hold till chemo done. I do miss going especially swimming. Having had two new hips aged 50 and 55 I need to keep active. 
My husband is trying hard to balance everything with meds, food and exercise and he is still doing the deep breathing exercises to try and regain full lung expansion. He now hits the 4000 on the spirometer most times and with less effort so fingers crossed. He has been doing the spirometer since after first op on 4th May! 

I am going to the shops in our market town today - not walking in lol. Bfg there is a song about where we live to do with the sea and a castle - we have a castle but furthest from the sea! The name also sounds French due to William the Conqueror! 

keeping  the faith 

Milly

Hi Millie,  it's Sally here moving over to the "group [@RayB]‍  board"!  I hope your foot is getting better and you can get out more easily soon.     How is your husband getting on with it?   You must be on day 4 (a particularly bad day for us this time).  We are on day 8 of the chemo.   Husband is slightly better and went for a walk yesterday, and just gone out again today.   Side effects of the chemo are getting worse though as time goes on.  The GOG syndrome [@bfg]‍  described by bfg is more difficult and lasts longer. Very helpful to know about this though thank you [@bfg]‍.

thank you very much [@Hilts]‍ [@dooggreg]‍ [@Tabnabs]‍ and everyone else who has posted on here, it has been a support and help to me, even though i feel bad I hadn't written anything, I am sorry.

If I can help anyone going through this horrible episode in their lives by answering any questions I would be more than happy to.   Bearing in mind it isn't me with the cancer, it is my husband.   I am an onlooker, a rather weepy one at that...

Sally

Welcome Sally,

Glad you made it over. Weeping is allowed as is every other emotion! Yes day 4 and this cycle dare I say  he seems better than last day 4, sun helps too! He is just about to go a short walk. Not much appetite but has managed to eat breakfast and a boiled egg and toast for lunch. Had a scone too.

My ankle is improving thanks - keep going and 

keeping the faith

Milly