We are green for go go go!: We had a... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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We are green for go go go!

Lucypuppy profile image
Lucypuppy
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We had a very good meeting with the oncologist on Wednesday and husband has got the green light to start chemo next Friday. We're pleased it's happening so soon.

They are going with ECX with husband having an overnight stay for the epirubicin and cisplatin, not because of the time it takes, but they want to make sure he has enough liquid inside him so it's easier via a drip. They found that patients with OC struggle to drink the amount of liquid require to flush it through the body. An overnight stay once every 3 weeks we can cope with. The capececitabine will be tablets and he has to take an anti sickness medication too.

He is to have 4 cycles of chemo pre-op, then a break of 5-6 weeks then the operation, then nothing post op.

What we did discover was that this particular cancer centre give preventative medication (dalteparin) to stop blood clots for the whole of treatment so we'll be proficient in injection technique come the end of this. πŸ˜‚πŸ’‰

Husband is in very good spirits and just wants to get the show on the road to get better. We know it's gonna be a long slog, but we're in it to win it.

Can't beleive how many cheesy saying I've managed to get in this post πŸ˜‚, but we are all in the right frame of mind to kick the @$$ out of this cancer.

OC.You are the weakest link. Goodbye!! πŸ˜‰

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Lucypuppy
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Amycaz profile image
Amycaz

Morning Lucy,

That's great news that you have a start date.

I am currently travelling to the hospital with my Dad for his final treatment. It's been a long road but there is light at the end of the tunnel! After 84 days of chemo, 25 days of radiotherapy and a 9 and a half hour operation it is finally coming to an end. Hopefully for good!

Thats interesting that your hospital give preventative injections for blood clots. My Dad had a blood clot in his lung picked up half way through pre op chemo, and when I asked on here, they seemed quite common. So that's a good thing for him!

Also, good that your husband is able to stay in over night. This was not offered to my Dad but I think sometimes he could have done with this. He had numerous fluid flushes during the process to ensure that he was hydrated but they let him go after the 8 hours. During the second round he ended up back in hospital early hours of the next morning due to a bad reaction, so I think it may have been of benefit to him to have been kept in anyway.

Tell your husband to take plenty of books/portable DVD player etc as it can be a long day.

Also, take some food that he is able to manage to eat just in case they don't have anything suitable on the menu.

Best of luck to you both. This is do-able! Anything I can help with let me know.

Amy xx

Lucypuppy profile image
Lucypuppy in reply to Amycaz

Thank you so much Amy. Great news that today is the final treatment day for your Dad!!

Must be a great feeling to know you are now out the other side. I guess that will have its own challenges too, but you have him with you which is he main thing.

I find it strange how different areas have different regimes and protocols that they follow. I guess they follow the guidelines and then work on the vast amount of experience they have.

The oncologist is a funny wee woman. She seems very eccentric but she knows her stuff and was very matter of fact about things. "This will happen". "This won't happen" "this side effect I have never seen happen" "this may happen, but we have drugs for that". She was direct and to the point and again reiterated the fact they were treating to cure between pre-op chemo and the operation so no need to pump more chemo/radio afterwards unless they found something the weren't expecting, but from all the tests they have carried out so far she found that highly unlikely. Again all very positive.

We just want to get stared and get it done with.

Bacardi profile image
Bacardi in reply to Amycaz

Hi Amy read your post , I hope everything goes well for your dad today . You have been a brilliant daughter being with him every step of the way + being kind and answering every post to help us understand this dreadful cancer when you can . Take care . Jane .

Bacardi profile image
Bacardi

Hi Lucypuppy I know exactly how you feel as we were in the same boat waiting on the chemo starting . My husbands chemo started last Friday his is ECF he was offered 5 days inpatient but he went with the 9 hours in and home with a pump for the next 4 days . The nurse came in and disconnected it on Tuesday ,he felt fine through it all as he is tube fed + he had 2 lots of antisickness that we put through until yesterday he wasn't feeling good the Dr thinks it's a urine infection he has so is on antibiotics now . I know we have a long road ahead as it's every 3 weeks for his treatment , he will have 3 cycles then a scan then another 3 cycles then a laparoscopy and depending on the outcome of that hopefully the operation . So will just have to have patience . I hope everything goes well for your husband . Jane .

Lucypuppy profile image
Lucypuppy in reply to Bacardi

Hi Jane.

So your husband is having 6 cycles pre-op? Is he scheduled for anything after the operation at all? Most of the things I've read say that is the norm, but I've asked 2 consultants, a registrar and a nurse specialist and they all say that patients struggle with the chemo etc afterwards so it's all given up front.

Where about is your husband being treated? We stay half between Edinburgh and Glasgow but have to attend the WGH in Edinburgh. They've been amazing.

Just interested in the different regimes that are used and why one would be used over another.

Hope your husband feels better soon a UTI is not much fun at the best of times let alone when your dealing with cancer treatment too.

I completely agree with your compliments towards Amy, she's been great to me as well. In fact everyone has.

Take care.

L 😁

Bacardi profile image
Bacardi in reply to Lucypuppy

Hi Lucy , we stay Larbert Central belt and we go to the Beatson in Glasgow for all his treatment then Glasgow Royal for his operation . He has been told he will have chemo after his operation too . Does your husband have a feeding tube in ? My husband is nil by mouth since June as his tumour is at the bottom of the oesophagus and stomach and is finding it very hard having a tube up his nose for this length of time + the picc line in his arm for the chemo . This forum has been a life saver for getting your queeress answered . Jane .

Lucypuppy profile image
Lucypuppy in reply to Bacardi

Aw. You're quite close then. But that's a trek from Larbert to the Beatson.

Husband doesn't have a feeding tube in, but he is on an almost liquid diet with the occasional ginger snap, piece of shortbread, porridge or bowl of baby pasta. He has supplements from the GP so he uses then to make fruit smoothies with extra cream and ice cream. So far it's having the desired effect and he's managed to put on 10 lbs.

He will have a feeding tube after the op, but he's prepared for that so we're trying to bulk him up now. Hopefully the chemo will shrink the tumour a bit and he can eat normally again for a wee while before the op. When is your husbands op?

L 😁

AMLux profile image
AMLux

Good luck with the chemo. I'm glad that you're both feeling positive. Everyone says how important that is. I'm going for my second chemo session on Wednesday.

AM x

Lucypuppy profile image
Lucypuppy in reply to AMLux

Thank you. How are you finding your chemo?

Husband has been a star. His motivation to get this sorted has not wavered one bit. He has 2 girls (15 & 17) so as much as he's doing it for himself he's doing it for them and me too.

I think the positivity helps a great deal and we've got that in abundance. πŸ˜†

Bacardi profile image
Bacardi in reply to Lucypuppy

Hi Lucy , my husbands last chemo is marked down on his notes to be the 22nd December if all goes well . Then I don't know when they will do the laparoscopy so it will be into 2018 before he will know when the operation will be . That's why I'm hoping the chemo shrinks the tumour and he maybe able to get the feeding tube out. Did they say what grade your husband tumour is ? His is a grade 3 so that is why they went with the ECF . Take care . Jane .

Lucypuppy profile image
Lucypuppy in reply to Bacardi

Hi Jane.

Husband is T3 N2 M0. But he's only 48. Has no other health issues apart from the cancer. He's very fit and active and stil managing to eat liquidised foods.

x

AMLux profile image
AMLux in reply to Lucypuppy

Hi Lucy ,

I'm an expat Scot living in central Europe. I don't know if they do things differently here. I will have 4 chemo sessions at two week intervals. The treatment is FLOT which I believe are 4 different drugs. My sessions are done over 2 days. For the first I had to stay in hospital just to make sure I had no bad reaction. I went in at 9am. They did blood tests and an ECG. Then they hooked up a drip feed of anti nausea drugs. By the time they hooked up the first bag of chemo drugs it was 3pm. The 4th one was connected around 9pm. That took 25 hours. I felt fine other than being very tired. I went home and had a good night. The next day I went for a shower and felt dizzy. I called out to my husband but then I passed out. I also vomited. This happened twice and my husband got quite a fright so he called an ambulance and the hospital. I ended up back in hospital for two nights. It turned out that my potassium levels were down. I hadn't been aware that this could happen but I'll be prepared for next time. My second chemo is on Wednesday. I'll go into hospital for a few hours while the first three drugs are administered and then they'll hook up the 24 hour one and I'll go home.

Good luck with the first session. Make sure your husband drinks lots of water.

Hugs to you both.

AM x

Lucypuppy profile image
Lucypuppy in reply to AMLux

Thank you.

Everyone has said to him to drink as much as he can, but when his food is all liquid it's quite hard to drink extra liquid on top not that. Think that's why he's being kept in overnight.

AMLux profile image
AMLux in reply to Lucypuppy

Yes that can't be easy for him. I am still able to eat although there are times when I go for a few days without eating and I just can't get the food down. Today I bought a Nutribullit to see if I can get some nourishment. I lost 2kg after my first chemo but I've put on 1.5kg again.

Bacardi profile image
Bacardi in reply to AMLux

Hi Amlux , how did you find your first chemo , did you have any problems ? Does your chemo go for 5 days too ? My husbands does , he is staying very positive as he has only had knee replacement last year which he got over with in 6 months and at 71 not many can , take care hope your next chemo goes well for you . Jane .

AMLux profile image
AMLux in reply to Bacardi

Hi Jane.

I've written quite a long explanation to Lucy so I hope that you can see it.

I hope all goes well with your husband's chemo. I believe it is important to be positive.

My oncologist said that hair loss normally occurs about two weeks after the first chemo session. I went along to see about a wig today. I have quite dark hair but am thinking of going blonde just for the hell of it!

Stay strong and positive.

Hugs to you both.

AM x

P.s. my new motto is "Be brave. Even if you're not, pretend to be!

lynnbibb profile image
lynnbibb

Good luck with the chemo ~ Dave had 3 rounds of , but like Amy's dad, didn't have the option of staying in overnight.

Well done on staying so positive, and keep us posted. Love from us both here xxx

ELI55 profile image
ELI55

Hi Lucy,

I'm so glad that you are at the starting line - it's so much better once you have started treatment (as difficult as it is). Don't worry about the injections. My husband developed clots which were only discovered after his post chemo checks. He was absolutely horrified as they had him back in to try and teach him how to inject himself. After trying to persuade him for over 2 hours, the nurses admitted defeat and suggested he call back the next day with me in tow. I was not keen, but the alternative was to wait in each day for a community nurse. My other half was a chunky build before his op and needed 2 needles for the required dose - I can only say that once I managed to catch him, it became quite easy (and didn't hurt me at all!) Joking apart, the needles are small - pinch a fold of fat (if there is any left!) and don't hesitate. My husband had to admit that it didn't really hurt - it was just the thought.

Good luck - I hope it all goes to plan.

Elaine

Lucypuppy profile image
Lucypuppy in reply to ELI55

Thank you Elaine.

Your right, we both feel so much better having a plan in place.

Husband just wants to get started on it. He's being so positive about it, more than putting on a brave face. He genuinely knows he's will beat this and get though the other side. I think that is half the battle.

There were so many poor souls at the hospital clinic all at the same stage in the process as my husband and they just looked beaten by it. I felt really bad for them as we were asking loads of questions, getting as much information as we could asking for more details etc. No one else was doing that, they just seemed so accepting of it and going with the flow, not daring to ask or challenge. Like that's the cards they were dealt and they were stuck with it.

I'm usually quiet shy and like the company of those I know but I went and spoke to the wife of another gentleman who was starting the process, she just looked so lost and she reminded me of my granny. (My husband is at least 20 years younger than everyone else) It was only a 5 minute chat about nothing really and I offered to get her a tea. I like to think that I maybe helped her a bit that day and maybe some of our positivity rubbed off on her and her husband. I'm hoping I see her again on Friday to see how they are both doing.

AMLux profile image
AMLux in reply to Lucypuppy

Hi Lucy. That was a lovely thing to do.

AM x

sallym profile image
sallym

It is an unpredictable journey, I was given a possible extra 3 yrs. I started out when I was 58yrs old, a leap into the unknown. In another fortnight I shall be 82yrs old, still going strong.

So my best wishes to your husband as he sets out on this journey, and please remember YOU are important too. Sally

AMLux profile image
AMLux in reply to sallym

Sally, you are amazing. Giving hope to us all.

Thanks,

AM x

Amycaz profile image
Amycaz

Has your husband started chemo today Lucy? Xxxxx

Lucypuppy profile image
Lucypuppy

Hi Amy. .

Thank you for remembering.

It sure did start today, that's me just hone from the hospital just now (10pm). It was a long day.

Husband was a trooper and for some strange reason he's been able to eat solids no bother at all. No foam, no burping, no choking, but he did get an anti-emetic before he got his steroids so just wondering of that's helped.

We're both experts at injection technique now so we'll manage that when he gets home too.

Just enough time for me to get a bite to eat myself, then some sleep before I pick him up in the morning.

Thanks again for asking, that was lovely of you.

L xx

Amycaz profile image
Amycaz in reply to Lucypuppy

Glad to hear all went well.

Hopefully will continue to do so!

That's a positive sign with his eating!

Keep us posted.

Don't forget to take care of yourself too

Xxxx

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