12 Days and Counting

[Lucypuppy]

Geezo at the start of this whole nightmare it seemed like an eternity until chemo for my husband was to finish, but here we are and he only has 12 days until it's done.

He has already been discharged from the chemo service (his oncologist said she didn't ever want to see him again - believe me love the feeling is well and truly mutual 😂lol) and he's now classed as a surgical patient.

Overall his chemo has been no where near as bad as either of us expected it to be. I had visions of there being sick bowls all over the house and me going about with my margolds and apron being nurse maid. We are so grateful that hasn't happened! The worst side effects for his has been the fatigue much more so this cycle when his bloods were at their lowest, but he's starting to pick up now and is much brighter and managing to be a bit more active. Huzza!!

He had a slight "blip" at the end on cycle 1 when his kidney function went a bit haywire, but glad to report it is back the 100% normal now, so at least I know both my kidneys are mine for just now, I'll hang to them just now just in case he does need a spare 😁

So now we wait for surgery. More waiting - don't you just love it? But hubby has his repeat CT scan tomorrow, the MDT meet on Friday morning to discuss it and we have an appointment to see them Friday afternoon .

We're not nervous about it, what will be will be. We just need to know what the plan is next and if the chemo hasn't done what it's meant to have done then what are they gonna do next. It's not being negative, I think it's being realistic. The emotion, hurt and anger we both felt back at the start has gone, or at least diminished (a lot) and we are able to approach any hurdles with a more practical less panicked hat on.

We do continue to get through this with a somewhat warped sense on humour and man oh man that's been the best thing we could've done. We are not lying down to this, we've had plenty of laughs, giggles and shenanigans along the way. He's still the same person as he was before he just happens to have a "thing" growing in his oesophagus. He's still my husband, he still leaves his socks on the floor, he can be a stubborn pain in the butt sometimes, but he's mine.

I really do like this group - (it's much better than some of the others out there). I've gotten so much help and advice, I've even joined the OPA, ordered a putnam's wedge pillow (at a discounted price), printed off loads of self help guides and recipie ideas (I'll plant some trees to offset my increased paper consumption 😀) which have all been super helpful and I wouldn't have know about any of it if it was for this group.

Thank you. Thank you. Thank you! 😁😊😁

[NatChap]

It's great you have such a positive approach because I think that makes an enormous difference. I do hope chemo has been effective and you focus on building hubby up ready for surgery! 🙂

[ELI55]

So glad to hear you are coping - a sense of humour always helps! My husband's chemo didn't do huge damage to his tumour, but we saw it as a "mop up" for any stray cells. Also, although more chemo was planned for after his op, we were warned that not everyone ends up with it (and he didn't)

We have just been for his check up today, after a 7 month break - the longest so far. I never sleep well for a few nights before, and doubt I will ever conquer this worry . Luckily, he seems okay and we have a 5 month break before the next. The main problem is that his tumour marker fluctuates within a range of 25 to 40, so I don't think he will be discharged from clinic just yet. Anyway, we live to fight another day.

Like you, I love this group - it's almost a second family where I can find out all sorts of useful stuff and recharge my optimism.

Best wishes for your meeting - will cross my fingers that you get a date for surgery.

Elaine x

[Lucypuppy in reply to ELI55]

Hi Elaine.

Being honest we're not expecting huge shrinkage to the tumour either. He still struggles to eat solids, especially when he is tired so we know it's probably not done much that that. As long as it's moped up the lymph nodes affected (approx 6 localised as per 1st CT) and the strays that may have gone for a swim round about that's the main thing. The tumour will be getting chopped out anyway and regardless if it;s shrunk they still need to take away the same amount of oesophagus that has been affected.

It's the waiting that really is the worst, but a 7 month break then 5 months is good. Least they are keeping an eye on him, but you can get on with your lives in between.

Can I ask what the tumour marker is? I've never heard that mentioned before. How do they measure that and what do the numbers mean?

Thanks for your best wishes. I'm sure we'll be just fine. That is until husband realises we're going to Ikea after his appointment - ssshhhh. He can wait in the car or the cafe will I have a nosey round - lol

[ELI55 in reply to Lucypuppy]

Hi Lucy,

My husband is coming up to 4 years from his diagnosis. He is still having regular check ups, and about a week before his appointment, he goes for blood tests - they look at liver/kidney function, iron, magnesium and ferratin levels, and also a specific test which I think looks for signs of gastric, oesophageal and pancreatic cancers. This produces a "tumour marker" - for oesophageal cancer up to about 37 is "normal". They have said not to get too worked up as it can go up and down for reasons not related to cancer, and also it is important to see it in context of general health and how you are feeling.

Hope this helps.

Elaine x

[Lucypuppy in reply to ELI55]

Thanks Elaine

Great help. x

[Kate1503]

What a great, uplifting post Lucy!! So pleased all seems to be going well at the moment and I'm sure everyone hopes the CT scan is good and there's surgery as planned. My husband and I have just embarked on this (unwanted and unplanned!) journey - he had his first chemo session yesterday so we have a way to go yet. As you say, this forum is a great help - just sharing experiences makes one feel less alone and scared.

Thinking of you both, best wishes, Kate x

[Lucypuppy in reply to Kate1503]

Kate there really is no other way to be during this whole thing. There is a very nice man on here "Bruce". He gave me so much help and information right at the start when we were at the place you are now and one thing he said to me was laugh. Honestly a sense of humour and staying positive really does make a huge difference. Don't get me wrong there have been times I've been in a right state about things, but that becomes less so the more informed you get about treatment and what's going on.

You'll get to know where the dips and rises are during your husbands chemo cycles. It's sometimes good to keep a wee note of how he's feeling on what day, don't get too hung up on it though, but you can see what to expect for the cycles to come. I know when my husbands course of steroids are out his system, when his bloods are at their lowest, when they start to pick up. When he'll start struggling with solid foods again. It's good to see a pattern then you're prepared the next time for it.

How many session of chemo is your husband having. Mine had 4 cycles of ECX chemo - all pre op and none planned post op, although there may be some radiotherapy depending on the pathology that comes back from the removal of the tumour and lymph nodes.

Hope your husband is getting on ok with his treatment.

[Kate1503]

Thanks Lucy! We are gradually coming to terms with his unwelcome guest and beginning to laugh at things!

My husband will have 4 sessions of FLOT chemo, followed by a CT scan to see if he's suitable for surgery. If he is, that will take place after a break of 8 weeks, followed by another 8 week gap before a final round of another 4 sessions of FLOT chemo. So, we have a way to go yet. Still, the first session was yesterday and apart from some hiccups in organisation (which we can laugh about today 😉), it went Ok. I'm acting as nurse and care coordinator and keeping a written record of medication, temp and how he's feeling generally. Lord only knows how people who live alone manage. I hope everyone who is living with this dreadful thing has someone to care for them and share things with. Thinking of them too.

Best wishes to you both, Kate x

[AMLux]

Good to hear that you are coping. A sense of humour is very important and can get you through the darkest moments.

Hope all goes well for the next stage of treatment.

Sending hugs to you both.

AM x

[Hidden]

You're doing really well - we're all different and react in different ways! When you have bloods taken - which is every time you turn around! - they check for tumour markers, which is good in case there is anything sinister going on. I am 4 + years post op and never a problem with my bloods. You are at the beginning of a long road to recovery. Humour is key! This year we have been to Goa twice, Mexico, Croatia and are currently in Paris! As long as I know where the toilet is I'm fine! I had 3 rounds of chemo before my op and 2 after. I am very lucky and live and love every moment! You will get through this and continue to have a good and active life. Good luck and lots of love Angi xx

[Lucypuppy]

Thank you so much Angi.. it really is helpful to know there is a decent and fulfilling life to be had at the other side of this.. husband and I have been planning a trip camper van trup round New Zealand, but we just never seem to find the money or time for it. So after Christmas there will be some serious saving going on in our house. Our New Zealand adventures will be coming to fruition!!

[Hidden]

HI, i had 2 chemos, lucky it shrunk my tumor, if it had not worked, it would have been palative care,, so they then after a short break from the chemo,, operated... I must say, i had no pain, well was drugged to the 9's i suppose,, and got through the op with flying colours, they were happy with me,, and i was up with all the drains, trying to walk within days. I now have to have the other 4 chemos,, hope start on 15 aug...

My probs at mo is the eating, trying to get food down the small hole,, have another stretching tomorrow,, hope this helps,,

How many chemos did hubby have ?

I also go past the 2 sessions i have quite well,,, ulcerated mouth was not nice,, but was not sick,,,and just a little diarrhea... i didnt take pills for it, as was not hat bad..

I am hoping the next 4 sessions go as well as the last ones i had,,

Hope you hear news soon re OP,

YVONNE