Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Raaaaaaaay

That;s not just a rollercoaster, that's the twister on the rollercoaster with the dodgems joining in for good measure.

I can't believe how common the blood clots are - mine kicked in a few days after the first cycle back in December, so they whipped it out (the picc line) and stuck it in the other arm a couple of days later, with blood thinning injections twice a day.  It was attributed to the picc line rather than the chemo.

But the time you've had with the infections - and kicking in so long after the chemo cycle.  I hope you gave the consultant a long list of people you wouldn't p'ee on if on fire, never mind resuscitate.

i'm feeling post-flot guilt - it's been a week since the pump was taken off and the picc line taken out, and last night was my last filgrastim.  The whole cylce hit harder than the 1st time, but nothing compared to what you're going through.

So - keeping the fffaith and staying strong and remaining the bfg

Yaaay Ray your back.

Blimey though, you have been through it, but you are still on the ride with us all.

The body hates all these lines, it tries it's best to  get rid of them any what it can, so clots, infections, are pretty common. Husbands was starting to play upon 7 th cycle, but it did make it to the end. His arm is still sore where it was. Horrible things, but no real alternative given that amount of juice in one go.

Husband didn't have the final 2 oxiplatin due to a proper anaphylaxis!!. I think I read somewhere that only 40% complete the 8 cycles for one reason or another. As I remember you had a good pathology and I totally get where you are coming from when you say enough is enough.

BFG- so now you are done too. Now the recovery really begins. In terms of the emotional and physical. From now on it just better with no planned slapping down. Enjoy.

As ever, keeping it up and keeping the faith

Hilts

Hi all,

Firstly welcome to the new members of this Club which no one wants to be in but has helped us all.

My condolences on the loss of your husban Alex. No words are adequate fior such a huge life event as losing your loved one.

Ray what can I say - your path has been complicated too. You're still here and ffff to DNR!

You have gone through such a lot and you know, along with advice fro medics, what your body can cope with. 

You may have seen from my posts that my husband is on the snakes and ladders board too! A CT scan tomorrow and hoping for some good news. At least his vasculitis is going! I send my very best thoughts to you and your family for a smoother journey on this long road.

Lee I hope your dad is feeling better. So tough.

Happy hols to those who are getting away. Gerrie yes getting fit will help. Also Hilts husband had Inspirator training Device - we asked but the hospital said they didn't offer it unless you had lung problems. In hindsight would it have helped my husband - don't know but maybe worth investigating? 

Keeping the faith 

Milly

PS Had a nice distraction today as our eldest son and his girlfriend have moved into a new home - so busy helping them. My husband came later and it was very emotional as he nearly wasn't here - but he is and is getting stronger little by little. Touch wood etc etc!
 

Hi Milly,  good to hear from you.  My Dad has had a really rough few weeks - constantly feeling/being sick, no appetite,  no exercise,  sleeping most of the day, extreme hot/cold spells, loosing lots more weight...

The oncologist last week said he thinks the side effects are down to my Dad having his second maderna covid jab and this conflicting with my Dads second round of chemotherapy which now includes targeted therapy. 

The oncologist did say he expected these severe side effects to start wearing off this week and they have - the last few days my Dad has stopped being sick,  started eating again and even went for his first walk today in more than a month (he always use to walk every day).

Si I guess we just need to take each day as it comes and hopefully he'll keep improving little by little. 

I'll keep my fingers crossed for the ct scan tomorrow...good luck. 

Lee

Hi Lee,

I'm pleased to hear that your dad feels a bit better and is able to eat. Strange this COVID vaccine how some people are affected more than others without the complications of chemo etc. Hoping he continues to improve and nutrition and fresh air can't be underestimated.

Thanks for your good wishes.

Keeping the faith

Milly

Hi y'all

Millie- I knew it.  What a lovely lovely distraction. It really is quite emotional when you've been through all the 'merde' and then slowly but surely little chinks of sparkle start coming back into up your life.

i have had so many 'little sparkles' on the recovery road. Father's Day was one, along with the holiday.It is my husbands birthday next week, he'll be 57, but I have a strong urge to get him a 1st birthday card, as one yr one from diagnosis, but maybe not,  not sure.

Lee- you are having some 'little sparkles' too. Your Dad is improving (:.

intersting thing about the Covid jab- I go with the Dr theory. Giving a jab that is supposed to generate an immune response, to a person immunosuppressed by chemo is absolutely bound to have an effect. It is one of those cost/ benefit conundrums. Get the jab or get Covid !!! For your average 18 yr old, who don't get sick fine, but in someone immunosuppressed the jab will make you feel utter sheeeite, but getting Covid would be a whole lot worse. The effects of the jab will pass.

I am staring to think these sites, (this one in particular ) are 'addictive', even when I haven't got anything to report , I look to see how everyone else is getting along and can't help blathering on ! and when people don't post for a bit, I start worrying how/ where they are......

Jaeof Kent and BFG- I have just worked out how big you 2 actually are!!!. I am not a metric girl, I cannot visualise 2.02M!!! Convert to proper measures that is 6ft 7 ins OMG. That is 20 inch taller than me!!. My husband is 6 1, we make a good team as he can reach top shelves and I can get down into little space at floor level LOL.

Keeping it up and keeping the faith

HILTS

Hi Hilts and all,

I agree - this site is addictive and I too get concerned if I've not seen a post from a fellow warrior! I was pleased when you posted Ray as, after all, we've all hijacked your diagnosis chat!

My question for today is:

Any tips on the sickness feeling after eating? Overall as I've said my husband is doing well eating a smaller but normal diet. However he can feel nauseous afterwards. He has anti sickness meds which do work. We've tried swopping from normal tea with milk to lemon and ginger tea after breakfast. Any tips?

By the way I've read green tea is good for the lungs so he's giving that a go too!

Keeping the faith 

Milly

Hi Milly,  after experiencing the sickness with my Dad for the last few weeks,  the only things that really worked were:

Very small amounts of food- try really small quantities but as regular as possible. 

Meds - we've experienced the first anti sickness meds didn't work on the second round of chemotherapy,  so the oncologist changed them

Fresh ginger and lemon in an infused tea - with no milk. 

My Dad tried all different things but these seemed the most effective. 

Lee 

Hi Millie, 

just 'interviewed ' the victim (:

He says " absolutely " , felt sick a LOT.- but doesn't anymore.

It is all down to the new plumbing inside, which is probably at least half the size it was. He had 'dumping' at every meal until about 6 weeks ago, but as you all know, 'moderating' portion size is not his forte......

Also something called the 'vagus nerve' has been tampered with and takes a while to get used to it.

So take heart- it does improve, albeit slowly.

Short one for me today- no doubt I'll be back later

Kepping it up and keeping the faith

HILTS

Hi,

Thanks - good to know that it lessens with time. The meds works but good to have some other options which are more natural. Yes the vagus nerve - I recall reading something about that and appetite so it makes sense if it's been disrupted. Fortunately he does get hungry and is enjoying his food. He has had a small cooked breaki this morning  as he couldn't eat until after the scan. Just come back from hospital (in time for the match). He had a delicious concoction that smelt like Pernod!

When I was a teenager I got extremely drunk on Pernod and Black - so that put me off Pernod and Ouzo as well! Lol I think he needed an umbrella in and crushed ice. Big bottle of the stuff to drink in an hour! Contrast dye as well. 

Anyhow back home and the sun is shining.

Keeping the faith 

Milly

Hi,

Thanks - good to know that it lessens with time. The meds works but good to have some other options which are more natural. Yes the vagus nerve - I recall reading something about that and appetite so it makes sense if it's been disrupted. Fortunately he does get hungry and is enjoying his food. He has had a small cooked breaki this morning  as he couldn't eat until after the scan. Just come back from hospital (in time for the match). He had a delicious concoction that smelt like Pernod!

When I was a teenager I got extremely drunk on Pernod and Black - so that put me off Pernod and Ouzo as well! Lol I think he needed an umbrella in and crushed ice. Big bottle of the stuff to drink in an hour! Contrast dye as well. 

Anyhow back home and the sun is shining.

Keeping the faith 

Milly

Hi Y'all, 

Oh Millie- Pernod & black. That is a blast from my past too. Along with ouzo (or oozy as we called it ), southern comfort and rum.. can not touch any of the stuff now, even the smell.... I'm sure we drank ouzo with bitter lemon yuuuuck!!!!! I have never liked wine, none of it. Nowadays it is pretty much only Ale with ginger beer top.

Some 'perfumes' I feel sick smelling these days as I brings back memories of waking up with hangovers from hell ((((:::: Obsession & Poison being the absolute worst (:

Doug , I really really hope you enjoyed your larger tops. After all you have been through, that 1st sip will be the best you've ever tasted (: and here's to many more- yay.

Millie- his appetite sounds great and if he is getting hungry even better. If I look back to January that was  where we were, but take heart,  6 months on and it is ,as I have said many times,  a surreal , bizarre memory.  We still think and ask 'did that actually happen, was it real' ?

One thing it has really brought home is the 'enjoy the now' and the 'small' things. I think we all have a tendency to look for the biggest and best of the things that the world has to offer, but since the last year, I have found myself really really enjoying a coffee by the canal- something I would always have found 'nice', but I am tending to notice more things around me......maybe I need to get back on the Pernod (:

Always keeping it up and keeping the faith 

Hilts

Hello everyone,

Had my feeding tube removed on Monday and met my oncologist today chemo is now finished whooo, time to start living , slow road , small steps.

My sickly feelings weren't as bad as some on here, just eating slowly and chewing seems to get me through most meals my portion sizes are usually half of what I used to eat and I do tend to leave something on the plate, I have twice had the dreaded dumping syndrome and it's not nice, won't happen again just have to be a person of moderation now.

I think this is a massive journey for anyone going through this either the person diagnosed or the immediate family this forum has been a great help to me and I don't know how people whom have been through this journey without the likes of this have coped.

Ray keeping it real 

Feel free to ask any questions (it's good to talk)

Be strong

Maybe a few sherberts this weekend 

Hi Ray, good to hear your chemotherapy has finished and you're doing well - I think you are right about moderation...small steps at a time.

Keep strong and good luck 

Lee

That's such good news. Hopefully the journey ahead for you is a lot more gentle the one you've just completed. 

Yay Rayb

You  made it through. It is such a relief finishing, and yes the recovery begins now the mission is complete. 
It is the emotional stuff that is the most difficult I find. No one is bothering us anymore. I'm okay about it now, but for the 1 st month I was like " arrrg, are we supposed to be somewhere doing something?", despite them telling us he is disease free ( for now !) I wanted to know how they were going to check if there was a cell hiding under his little toe nail or somewhere- they soon sorted that out, by pretty much saying f- off and live LOL!
Today is husband 57 birthday, his first since diagnosis, so a special day. 
He went to the pub last night to watch the game! Me and the kids just couldn't watch it- I am not even English as such, south Wales, but I have 'leave to remain' over the bridge (:. He and the kids are English. I heard the pub in uproar, carried on out the garden, then heard the 2 nd roar, so we turned the telly on at 91 mins, I don't think I have paced like that for years and sweated more than when we lived in Egypt (:::

After 4 pints (again) he came back, and I have to say I have never seen him so emotional, last time England pulled it off was 1966, he was 2!!!!. So along with being disease free, his birthday and England pulling off a cracking job, it was the best day ever for him ( apart from when he married me that is !)

keep it up and keep the faith

Hilts

Hi Hilts, I'm sure your wedding day was his best! Good to hear it's his birthday- another milestone reached and hopefully many more to follow.

Lee

Hilts

4 pints again??????  That's just rubbing my nose in it.  Can I ask what he drinks?  It may help me decide what my first pint in a pub is going to be for over 18 months.  And wish him a happy retrospective birthday from the bfg!

Ray - glad to hear that you are now on the up and up and up.  Recovery mode is underway (I almost miss my huge amounts of pre-chemo dex - almost)!

Milly - wish I could add  meaningfull stuff to the Nausea question.  Meds worked for me post-op - but my diet was and still is anything other than normal - more regular and high-energy to keep the weight up, But now post chemo will try and introduce a healthier balance of fruit/veg/salad.  The nausea I had was generally at the time of eating, rather than post eating - i had to ignore it and eat.  I often got some very strange reactions about 3 hours post eating - "late dumping" covered the symptoms, but rather than being an hour it was 3 hours after eating.  I stopped eating sugary things for a while and gradually re-introduced, and now only get the symptoms once every 2 - 3 weeks.  I think also that "volume" may be a trigger too, so tend to ensure that if i'm full - i don't force more.  It has improved though over time, so all I can add is to play around with the food to see what works - when you find something that does, then buy loads of it - then he'll go off it (the look on my other halfs face..   :-)), but things will improve.

cheers all

bfg

LOL,

yep BFG- he's incouragable! Honestly. He's sitting opposite me watching a re run of the goal & reaction and is trying badly to sign 'sweet Caroline' arrgg.

i need to go off the a health farm offering a weekend of the 'Keith Richards health promotion plan' !!

He's on the 'local juice' Hooky. Hook Norton ales. Even I like that (:

Millie- I go with what all the previous have said about the nausea. Absolutely trial and error, and it DOES improve over time, husband really stays away from potatoes , pasta and rice. Gives him dumping. Beer doesn't strangely enough ! He's also finding he doesn't use the glucose tabs any more- I suppose because he has sort of got used to what he can and can't eat. 
As strange as it sounds and I remember from my nurse days, that even when people felt green sick, we would get them to eat, nibbles of things like crackers, toast , anything really. Also found when bud and was on the post op chemo if we shoved a load of water and delicious feed down the tube, he felt less sick.

Anyhows

keeping it up and keeping the faith

Hilts

Gosh, so much to catch up on! 
just to add to the nausea thing, ginger has always been my 'go to' 

really interesting to read everyone's experiences, I'll keep them all in mind for later on. The latest is that I'm having micro ablation on one of the liver tumour, then oesophagectomy and other liver tumour slice and dice at the end of August beginning of September. Must admit now I've decided to go ahead and have the op, I just want to get on with it! 
Thinking of you all and keeping the faith

Hi all,

Pleased to hear that you've finished the chemo Ray! I wish you a smoother recovery. Well done as it certainly hasn't been a straight run for you.

Great news Hilts and 4 pints should be your husband's nickname. Yes good win. Good win for Andy Murray too!I was lucky enough to see him win in 2013 - great weekend! 

Thanks for all the helpful tips re sickness. He does take his time and does tend to stop when he feels full. As you say time and finding what suits seems to be a key factor.
 

Now for our update. We knew when Kev came home with a moderate pleural effusion that it was a considered risk. We had open access to SAU which we used when he developed his severe allergic reaction.

As planned he had his CT scan on Saturday,  appointment with specialist respiratory consultant from another hospital was arranged on Monday for Tuesday. Saw the consultant who said an urgent operation to sort the pleural effusion was the best chance to enable his left lung to expand. So took him in today, fast tracked through consultant met us there along with his registrar. Op planned for tomorrow- hoping it's keyhole but could be open surgery.  
 

So please send positive thoughts as he has been through so much already. 3rd major op in 8 weeks. Not as big as first but nevertheless another big hurdle. He is amazing and physiologically it's very hard especially after what he's been through. Obviously I'm very anxious but hoping this will help him to fully recover. It's just so hard as this is a complication from the second emergency op and pneumonia. 
 

Soo keeping the faith 

Milly