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

HI Rayb

You are having a bit of a time off it pal , hang in there , if an old turkey like me can get through this anyone can , the same goes to anyone reading this thread  , maybe i was just lucky to have a top flight team looking after me  coupled with my laid back attitude to the whole journey , this is not a sprint race more of a marathon , even now i think it will take me another year to fully recover even though i have started work 6 hours three days a week i still need plenty rest and down time , so my message to you Ray and everyone reading is be patient , relax , rest and take it easy , your body will let you know when it's ready to move ahead , impatience only leads to setbacks , in the meantime i as always am available to offer non clinical support to everyone , as always take it easy !

Regards

Douglas 

Thanks dooggreg, nice message. 

Lee

Hi Lee

Thanks for that , and you take care of yourself 

regards

Douglas

Who can help me come up with a word to describe the constant checking of a forum to see if anyone has posted an update?

It's always a challenge  - I don't like to ask how things are, as it seems intrusive - and like others, I don't tend to post negative stuff unless I can make it funny.  

But anyway - enough rambling.

I'm now 1 week post 2nd cycle of round 2 of FLOT - counting down the days (22 or 3 weeks tomorrow) when my final pump can be disconnected and the picc line removed - and as my surgeon said, let the recovery commence (I'm still aiming for the 4 pints as my 1st tick-box hilts!)

FLOT 2nd time around is slightly harder than 1st time, but still manageable - and again I would advise to share with your respective teams anything that's different, or unusual - there are a panacea of drugs out there that can help.

But enough of the bfg - just to let others know that I'm thinking of you all too!

Thanks for the update BFG - good to hear you're making progress. My Dad is on the second week of the second round also - he has already noticed an improvement in his swallowing and yesterday managed to eat some chicken on bbq! Our situation is different from yours as my Dad was told surgery isn't an option as its stage 4 and had spread to the lymph nodes on diagnosis. My Dad is doing really well and is still feeling strong under the circumstances. We are feeling that why the chemotherapy is obviously working with regards to swallowing (as it did on the first round), you feel that poisoning your body isn't as 'good' as you first think when swallowing improves - i guess it's a double edge sword!  

Hi,

Douglas I'm usually a very laid back person myself but for some strange reason, mind mindset isn't InTouch with reality, I haven't just been in for a nip and tuck lol definitely a marathon thanks for the words

BFG I'm chasing you lol, I have my second round of FLOT post op tomorrow, my experience of this is round 1 felt a bit more sickly than before never experienced the fingers tingling sensation but my left foot has been tingling for a few days now and I had the documented hospital visit urgh, regarding this thread updating/ refreshing, if you view this on a phone browser just maybe leave a tab open in your browser and hit the refresh or in Windows just leave a tab open and Ctrl + R , this is my way as sometimes I don't get an email advising there has been a new post.

Lee It definitely is a double edged sword and toxic stuff, but if it's improving things hey let's have some more, BBQ chicken very nice

Hope everyone else is bobbing along nicely at the moment.

Ray

Trying to keep it real

Hi all,

RayB I hope things improve and you manage your second course  of FLOT. You have not had  a straightforward journey, although I appreciate it's not a straightforward situation full stop.

Thamks Bfg for thinking of us all, as I do too. Everyone's situation is unique. I've not posted as like you say we tend to like to focus on the positive. My husband is still in step down. He has fluid in his chest cavity a result of trauma due to the bleed on his lung and 2 major ops within a week. The fluid is not draining easily. He has had a small drain which took some off but not enough. Therefore he has had to have a bigger drain put in ..again. This is a real concern to me because of what happened. I've been ringing during the night sometimes and the staff are brilliant. 
 

Lee I'm pleased the chemo is working. Your support will mean so much to your dad. I know how much our two sons have helped us.

Keeping the faith 

Milly

Hi y'all.

Glad to see everyone chugging along.

We are now having a problem...... husband doing so well, I suppose I thought we were done with complications aha- not ):

Although I have to say- not a really bad one as things go.

He is booked for an endoscopy. He's had a dreadful cough - been going on since post op, but they are thinking 'tight ' scar tissue causing reflux, = cough. Treatment pretty straightforward according to them - we know nothing is 'straightforward' in this game (:

If it is found to be tight then they will dilate it with a balloon- quite common apparently. Scar tissue from the join. We are both pretty wobbly. The mere mention of 'endoscopy' fills us with dread after the last time eke!

Surgeons pretty sure nothing dodgy going on, but thought that once before!

so , trying to keep the faith

Hilts

Ps- I follow this thread and get notifications every time there is a post, makes me look like I am on here all the time- just once a day (:

Hi Hilts,

I'm afraid we don't feel like we are chugging along, more up and down but hoping for more up! Over 3 weeks since first op which went so wel ..... 

I think I've read about this procedure somewhere - is it to stretch it?  It's natural to feel concerned. Hopefully it will be sorted quickly and help with the cough. 

Keeping the faith

Milly

Ray,

you are nipping at my heels. I feel more "sickly" too this time around - especially when it came to eating, but that wore off after a week after the cycle- my fingers tingle too, and sometimes my right foot decides to go off somewhere on it's own adventure (at size 14, I'm sure it's out there scaring old ladies).

Milly - they are ultra cautious about the chest draining.  My other half (which is another novel in itself) wouldn't be let out of hospital too, until the drain stopped draining - very frustrating.

Lee - great news about the bbq chicken.  My surgeon is very much of the opinion that improvement in eating can tell you more on how things are working than any scan - it was following my 2nd cycle 1st time around that eating improved.

Hilts - I read about this on another forum.  It's not uncommon and straightforward - but I know what you mean.  The last time we all had an endoscopy, it didn't turn out that well - but better to know and when his cough stops, he can drink more beer!

Keeping the faith, really!

Ray,

you are nipping at my heels. I feel more "sickly" too this time around - especially when it came to eating, but that wore off after a week after the cycle- my fingers tingle too, and sometimes my right foot decides to go off somewhere on it's own adventure (at size 14, I'm sure it's out there scaring old ladies).

Milly - they are ultra cautious about the chest draining.  My other half (which is another novel in itself) wouldn't be let out of hospital too, until the drain stopped draining - very frustrating.

Lee - great news about the bbq chicken.  My surgeon is very much of the opinion that improvement in eating can tell you more on how things are working than any scan - it was following my 2nd cycle 1st time around that eating improved.

Hilts - I read about this on another forum.  It's not uncommon and straightforward - but I know what you mean.  The last time we all had an endoscopy, it didn't turn out that well - but better to know and when his cough stops, he can drink more beer!

Keeping the faith, really!

Hi I was told Stage 4 spread stomach nodes. Chemo didn't work as allergic reaction too bad 1st session so Consultant said no to anymore as it would kill me. Inoperable as stomach nodes to close to aurota however not all bad as radiotherapy went well to shrink tumour an within 2 weeks of finishing was able to drink an eat anything (chips my new favourite food!) this was done in April so mentally am good so do think once eating an drinking sorted makes one hellva difference to health and mental well being. Been out lots for meals an off to Burnham tomo only worry is get CT scan results tomo but as been pointed out if eati g an drinking well must be a good sign so I am hopeful. Keep well everyone x

Have a great time in Cornwall Jae, and in Burnham Janice.

Just to bring a little levity to our club, my husband is determined to get me 'surgery fit' so off we went for a 10 mile walk from Yarmouth to Freshwater Bay and back, am now lying down in a dark room with a very large G n T, keeping the ......zzzzzzzzzz.....

Gx

I've only been to work and back......

2 more newbies in our club!!!!! Janiceme & Alex. Welcome.

Now, gents (Jae and BFG). Size, I cannot compete with  either of you, I am 5ft 1 inch and size 3 feet, so basically cut yourselves in half and that is about the size of it LOL. My Dad reckons I would make a good model...... for dwarf and / or doll clothes!!! He too thinks he's funny........cheeky ***.

Janiceme- my husband had a horrible allergic reaction to oxiplatin. I guess the body just thinks, "nope, not having this"- but there are LOADS of other tasty chemo treats available.....glad the radio has helped. My goodness what you said about getting food down and how good that feels- absolutely with you on that one. My husband was clogging at every meal, even soft stuff, then after the 2 nd pre op chemo all 'gone' could & swallow again- I cannot even begin to describe the feeling for both of us to know that 'murder' was working. He actually said 'food has never tasted so good' (:

Jae- don't say  not to worry about you.... we do and will (: that is the whole point of this board.Wearing Big pants are fine, but it is the strangest thing that even though we are all strangers to each other, I have found this site/board so good for the soul because we all 'get it'

LOL Tabnabs- I feel your pain.....I loath exercise in any form- As many know I am an advocate and follower of the 'Keith Richards health promotion plan' ((((::::: One 'exercise' that husband 'invented' for himself was walking up and down the stairs, not at speed, just as you normally would, he was working not so much on fitness , but stamina. I managed 1 minute and had to go for a lie down & cake,  he worked up to 12 mins ! OMG- if that were me I would have to call for emergency services ! LOL

You folk have lovely hols. We went to Lincolnshire coast over whitsun week, a part of the world I have never been to.. we had the best time, eating fish and chips without any trouble, chucking millions (of 2p's ) into the pushers.

We are on tenterhooks waiting to see if we can go on our summer hols. The first foray out of UK since diagnosis and treatment end. After the year we have had, I really need to warm my bones (:

Keep the faith folks in whatever you are doing.

Hilts

Hi and a shorty too! 5.2 with eyes of blue lol. And most people think we are cute so will take that! My consultant only gave me half the dosage and seems to think any type will not do me any good health wise but as the radiotherapy worked on tumour as you say must be other options so will find out tomo as CT results. Forecast not too bad for weekend showers but think we know to take our chances with weather but still nice break. As I have been shirt of breath lately we have hired 2 motability scooters lol so probs look like Madge out of Benidorm lol. Keep well every one out there fighting xx

Hello to everyone

Dear me this has been busy since I last visited, welcome to the new members of the rollercoaster ride. I have been on my next dip of the ride , had my second round of post op FLOT made it 10 days after treatment and ended up in A&E again with an infection and fever with uncrtrolled shivering, moved from A&E to EAU ward where they decided to remove my Pic line and then the consultant hit me with what are your thoughts on resuscitation ie. DNR scary is not the right words, moved from that ward to an haemotolgy ward where I spent another 8 days and they discovered a blood clot in my arm, I have a appointment with the consultant next week, think my body has had enough of this chemo, time to try and move on. 

Everyone one on this ride, keep the faith and stay strong 

Hi Ray, you have had a rough time! I get what you mean about your body having had enough chemotherapy...its catch 22!

It sounds like you are slowly going in the right direction- be strong and good luck. 

Lee

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