Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

I had my meeting with the oncologist on Wednesday, she was absolutely lovely, extremely helpful. On Monday I have a full-day diagnostic process at a cancer hospital, for a second opinion. I expect the treatment plan (for bowel cancer chemotherapy) will be exactly the same but they need to make their own diagnosis/decision, and this is my one and only body so I want to do everything I can to get this right.

The proposed treatment is 3 months of chemotherapy (4 cycles), and then that’s it. Obviously there are no guarantees but that’s expected to put paid to the cancer cells still lurking. It’s not going to be fun but [finish this sentence as you feel appropriate]

I hope everyone is doing well. I had my final MRI scan on Tuesday and my oncologist called today to say I'm now all clear!

Drank half a bottle of champagne and fell asleep. Very rock and roll!

@LucyWarlowsRightHand I’m glad your oncologist was lovely it makes such a difference!
I had 4 cycles before my op. Did they mention what drugs you would be on?

In 48 hours I'll be going into hospital for a month. So today I've spent the day quietly sobbing to myself. I've not managed to get dressed (I have washed). I'm not sure how I can do this.

I'm also pissed off that I've wasted today.

Oh @InOtterNews - sending virtual hugs. You will do it one day at a time. It must feel daunting, but once you’re actually dealing with it, you will deal with it

@InOtterNews I agree, that sounds incredibly daunting. One day at a time is all we can do. I don’t know what else to say other than that I’ll be thinking of you.

@Squiffy01 hospital 1 proposes oxaliplatin (drip) and Capecitabine (tablets). Sorry if the names are slightly Dutchified?!? I should imagine that hospital 2 will propose the same but I’ll find out on Monday afternoon after my day of tests.

I’m slightly nervous that hospital 2 is going to come to another conclusion or find something that the first hospital missed. I have to keep reminding myself that not only is this unlikely, but that’s the reason for a second opinion! I’m sure everything will be fine, I just feel a bit scared, and it’s ok to be a bit scared of course.

@LucyWarlowsRightHand

I think that's the combo they use here. @Squiffy01 will know.

Starmer and I had capecitabine on its own. My onc told me that new research on the two drugs together was leaning towards stopping after 3 instead of 6 months. Maximum benefit in early cycles. The full 6 sometimes led to permanent side effects with no significant gain.

We're hoping it applies to Capecitabine on its own, since Covid interrupted mine after 3 months. I'm much older than the rest of you and I was already worrying that I wouldn't bounce back and would lose my independence if I did the full 6 months. I still have a bit of neuropathy in my finger-tips and I'm not yet back to my pre-op levels of energy and stamina, but not being able to get out and about while shielding probably played a part in that and I'm still hopeful that I'll be able to extend my walking distance.

Just had a bit of good news. Had a colonoscopy today, part of my monitoring regime, and no signs of anything untoward. So wahey to that! (There will be a scan, too, no date yet, but I'll cross that bridge when I come to it.)

Re Covid, I think there was probably 4-6 weeks' delay and it took place in a day surgery unit separate from the main building. They'd built elaborate marquee-style walkways for access and you had to be carded in by a receptionist.

I'll be thinking of you, @InOtterNews. It's a daunting prospect, but you'll be OK when you're living it day by day. I always think that it's like taking a trip to Cancerland. Once you step on to the travelator, it's surprising how quickly you adjust. You've got yourself to the airport and you haven't forgotten your passport or tickets and now you can relax. In some ways, it's a relief that someone else is making the decisions from now on.

@Thymeout yes I was told from the start that it would be three months if I needed it, and then the oncologist mentioned that six months was no longer considered to provide any significant benefit over a three-month regime.
I think bowel cancer treatments are fairly standardised so I’m sure it will be the same or v similar to UK protocols.
You’re so right about ‘taking a trip to Cancerland’. For the most part I feel like I’m just getting on with it. I never knew I was this
strong. Good days and bad days of course, but overall I’m just like, this is my life now, OK then, I’ll keep moving forward.

Great news about the clear colonoscopy! 💪🏻

@Chesneyhawkes1

I hope everyone is doing well. I had my final MRI scan on Tuesday and my oncologist called today to say I'm now all clear!

Drank half a bottle of champagne and fell asleep. Very rock and roll!

Brilliant news!

@LucyWarlowsRightHand @Thymeout that is good to know. I had 4 rounds before surgery (three months worth) and the surgeon was told be since it wa stage three would definitely need more after then oncologist said I didn’t just said it worked well. But interesting that everyone might be going that way.

There are four drugs normally used for bowel I was on your combo capox I found the infusion to be the worst for me and where most of my side effects came from.

@LucyWarlowsRightHand good luck for tomorrow, I hope nothing more is found and you end up reassured that you will get the right treatment.
@Thymeout great re clear colonoscopy! I love your metaphor about Cancerland, it's a bit like the pandemic, no-one wanted it and it changes everything, but you get used to it and hope to get out the other side!
@InOtterNews there's nothing I can say to make the prospect of your hospital stay any better, so I'm just sending massive sympathy and hopes that everyone there will be very kind. Have you got plenty of phone data so we can check in with you often?
@Chesneyhawkes1 that is brilliant news! Congratulations and I hope the fizz didn't give you a hangover!

Inching towards my phone call re lung thing, the wait till Wednesday seems endless. I left a message for my CNS from last year on Monday, just hoping she could answer some of my questions, but true to form she hasn't called back. Hope I can get a more reliable contact in future.

@InOtterNews I can't even begin to imagine a month in hospital, especially at the moment with all the restrictions. Hopefully you will have wifi and we will all be here for you!

@Lubballoo Zofran is your friend for anti nausea meds, it's a wager that dissolves on your tongue.. I'm in Aus so not sure if meds are the same but my medical oncologist said this is the best available and I didn't puke once despite the fact that my chemo was pretty intense 😁

Sorry to jump on this thread but I've very recently found out that I have a rare form of cancer and I'm needing to vent a bit. It was found by accident when they removed a seemingly innocent fibroid from my womb and sent it off for testing. They weren't expecting it to come back abnormal and neither was I, I'm only in my 30s. I'm now waiting for an urgent CT scan to see how much (if at all) it has spread, only then will I have a clear idea of treatment and prognosis, however it's very likely I'll need a hysterectomy. To start with I was in a complete state of shock, I now feel like I'm in limbo until I have this scan and know exactly what I'm dealing with. I have a small child but we were hoping to have another baby which obviously won't happen now, so I'm coming to terms with that as well. I'm praying it won't have spread from my womb, but I have anxiety and am predisposed to think of worse case scenarios. I'm having to stop myself from googling things. I just can't believe this is happening.

@Bearlyawake I’m so sorry to hear that.

For me the period between diagnosis and treatment plan was by far the most difficult. I think I managed pretty well but your mind does run wild at times.

I hope your CT scan will come around very soon. Please feel free to discuss anything or nothing, whatever you feel like. I found it really helpful to talk to people who clearly cared but didn’t know me personally so I didn’t have to worry about their feelings IYSWIM? All I can say is try to keep an open mind. Google is hopelessly out of date when it comes to cancer, treatments are moving so quickly.

Thanks @LucyWarlowsRightHand, the consultant said he was hoping it would be within the next week, so hopefully I won't be hanging on for too long. I'm being referred to the regional specialists who deal with this type of cancer so I do feel like I will be in good hands.

I agree re talking to people I don't know personally. My DH and mum are the main people I've spoken to so far and I feel like I'm trying not to upset them when I talk, which is such a weird place to be in given that I'm the one going through it.

Hi Bearlyawake I was diagnosed with ovarian cancer (fallopian tubes)in June. I still feel like I'm new to this but if I can help please feel free to ask. It may be a strange consolation but in my experience if the medics suspect something is wrong things do move quite fast. Which although that may deliver the news you don't want knowledge is power.
I have had 3 chemo's ,4th one due on Tuesday and on Wednesday I meet with the surgeon's to plan hysterectomy. I agree with others try not to Google, that will only bring more gloom and anxiety. This thread is an enormous wealth of knowledge and support and I have been very grateful to have this resource so keep checking in. X

@Bearlyawake another one with ovarian cancer here - well, I had it last year, not quite sure of status now. I'm very sorry you are in this situation, especially being so young. Hoping for the best for you, this is a very supportive thread so it's good that you found it, and I hope whatever happens we can help you get through.

Hi @Lizdeflores thanks for your reply and I'm sorry to hear about what you're going through, I hope your treatment is successful x

Thank you @Bloodybridget

@Bloodybridget and @TDogsInHats thank you both 😊

I had a terrible hangover! I rarely drink. So I ran 8 miles and that luckily got rid of it.

To everyone on here - I hope all your operations and treatments go as well as they possibly can.

@Chesneyhawkes1 that's wonderful news. And I am in awe of an 8 mile run!

@Thymeout wonderful news too, re the colonoscopy. I haven't had the excitement of a colonoscopy yet, but after chemo ends will get two - one up my proper bum, and one via my stoma. The joys! And then, when they have patched me altogether and the stoma has gone, I get yet another to check it's all joined up ok....... Tell me it'll be fine!?!

Welcome to @Bearlyawake. That sounds really tough, especially the prospect of a hysterectomy when you have a young family. I agree with previous posters that the waiting it the hardest bit, and that this is an excellent source of support. I know exactly what you mean about not wanting to upset those closest to me, but when I actually had a big snotty cry on the phone to my mum she was wonderful and much more matter of fact and supportive and "tough" than I thought she would be.

Bah to your CNS @Bloodybridget and I hope the time passes quickly.

Thinking of you @InOtterNews. Could we all send you a postcard? You'd have to share initials and hospital name / ward, I suppose, but I'm no stalker (and stuck in the house anyway!).

Hello to everyone else - I hope treatment is going as well as can be, that waits pass quickly, and that the anti-sickness drugs work xx

@Starmer. It will be fine!

Seriously, most people say that the prep is worse than the event. I wouldn't entirely agree with that, but the first time my tumour was still there and he couldn't get past it and this time I do have a bit of a hairpin bend where the surgeon has joined something from the top to the small intestine down at the bottom. But it's all over quickly, especially if they're not doing the complete circuit. And you get a guided tour if you watch the screen, and results on the spot, which is a huge blessing. I saw my tumour, an alien, evil-looking, mushroom monstrosity, which made the run-up to surgery a breeze because I was so keen to get rid of it.

The moviprep is disgusting. Like lemon-scented Fairy Liquid. Better chilled and with something fizzy on the side to stun the taste-buds.

@Bearlyawake. So sorry you're here. I'm the Pollyanna of the thread, trying not to get on anyone's nerves. But 'rare' isn't necessarily a bad thing. I had a comparatively rare ovarian tumour - for my age - and it was 'cured by surgery', just monitoring. My totally unconnected colon cancer was picked up by a routine scan as part of that. And you'll get lots of nerdy attention. Fingers crossed for you.

@ starmer & Thymeout I have had colonoscopy 's in the past due to IBD I have a lot of strictures in the bowel and they have always used the slimmer paediatric cameras ,might be worth asking them to consider this option for the tighter areas. My top tips are always take the drugs and suck on the gas and air, there's no prizes for being brave!. With that approach I somehow managed to take myself somewhere quite pleasant😉

No one offered me gas and air! I've always wanted to try it. I had my babies before epidurals and fripperies like that. My way of dealing with pain is to pass out - hyperactive vagus nerve. I tell them about it beforehand in the hope it will concentrate their minds. The sedative is Fentonyl and Midazolam - no complaints on that score!

Good tip about the paediatric scope. I had to have the child's cannula, tho' I've never thought of myself as being in any way petite.