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.

@Bloodybridget I hope today goes well for you. My chemo is tablets (2 weeks on and then 1 off, for 6 months in total), and so no waiting about. Was very nervous about starting it this morning, partly because I'm rubbish at swallowing tablets, but yesterday they told me I could take it with food which was a huge relief, and so I am now officially 1/224th of the way through my chemo, all being well.

@LucyWarlowsRightHand I'm sorry to hear your news too, especially as your colonoscopy had been delayed by Covid. Do you have a date for the scan yet? I have bowel cancer too, and although I can't claim any great knowledge being only 5 weeks in to it all, I'm happy to answer any questions you might have.

And do you have any dates @gillmoregirl? Again, the waiting must be so hard. I kind of feel like I've queue jumped

@Starmer my scan is tomorrow morning. Rushing off to give a blood sample now. The kind words here mean a lot

Hope you're scan went ok today @Bloodybridget

I'm having a tough day today, I'm extremely fatigued and feeling pathetic. I staked 3 tomato plants and it's done me in. Had a good snotty cry in the garden where no one could see me.

@Starmer. Hope side effects are few for you. I'm isolating next week in prep for scope on 10th and hope they will give me some more info then. I'm hoping my delay due to them not feeling in priority but it's hard not to worry that the delay can make things worse. In some ways I've been able to pretend nothings wrong.

@InOtterNews sending hug your way.

Thanks to all for the good wishes. All went fine except that my bus got completely stuck in traffic on the way to the hospital, there was a demo blocking the road further on, so I had to get off and walk for 40 minutes - luckily I had allowed loads of time so I wasn't late! V hot day though!

@LucyWarlowsRightHand I'm sorry you are having to cope with this. I hope you get sorted with the treatment plan very soon. You'll get plenty of support on this thread, and I hope you have it IRL too.

@InOtterNews poor you, it is so depressing to feel ill and weak for ages. Sending a virtual hug and much sympathy.

@Starmer that's a long haul with the chemo, hope you get on ok with the drugs.

Wishing everyone a peaceful night. It is so hot here, and I have a very itchy insect bite on my foot, oh joy.

@Bloodybridget I’m so glad all is fine and good luck with future planning

Oh sorry about the insect bite - aloe vera works for me!

@ElaineMarieBenes thanks for the tip! Of course I don't know yet if the scan showed anything nasty, I have a follow up appointment on 12th. I reckon if they say am I ok with a phone call, I'll relax, but if they offer face to face I'll be bricking it!

Well, I just had my staging scan this morning. All quick and easy. I was terrified and shaky but that was 95% due to having eaten bad/no food all week because of the colonoscopy in Wednesday and then not being allowed to eat more than a cracker today.

Now for a weekend of trying to keep myself calm and hopefully enjoying myself a bit before results on Monday afternoon.

Sorry for not responding to anyone else’s posts just now - I’m feeling tired, headachey and sorry for myself! A few healthy meals and I’ll hopefully be back on track.

@Bloodybridget
I'll be thinking of you. I always feel that once I've had the scan, it's like setting off a stop-watch. Tick, tick, tick, till you get the results.
Yes - I was originally told 'late summer' but the appointment with my consultant is Nov 27th! Over a year since surgery. Will have to have scans and scope first, but no dates for them yet. There must be quite a back-log to clear. I'm in a fatalistic mood about the whole thing, trying to focus on how lucky I was to get my diagnosis and surgery over before Covid. I'm a news junkie so plenty of distractions tho' Trump being an arse means I stay up watching CNN far too late.

@LucyWarlowsRightHand

Sorry to be a downer, but you may not be able to eat healthy stuff pre surgery - or for some time after. I had a tumour in my colon and was put on a low-residue diet immediately to avoid an obstruction before it could be removed. They had to stop the scope because they couldn't get any further (ouch!) and the doc said he was surprised I hadn't already had symptoms. It's all a bit of a blur now, but I seem to remember eating a lot of trifle, spitting out the strawberries because they were on the banned list. Even bananas were controversial post surgery.

Not surprised you're feeling blue. Fingers crossed for Monday. It sounds weird, but it really does help to know exactly what you're dealing with and a plan of action

@Starmer - You're probably better organised than me, but I found it a bit of a worry to be responsible for my chemo, remembering to take the pills, planning my meals to fit in with the 12 hr timescale. I live on my own, so have a v flexible routine. Hated getting up early and having to eat to fit in with supper at a reasonable hour. Mini pots of Ambrosia creamed rice were a godsend. I had a notebook to note the times. Also, the idea that I might be one of the rare unlucky ones who needed an A&E dash was a lot less of a worry once I'd packed an emergency hospital bag I could just grab in a hurry. But my onc said she'd only had one case in over 20 years.

@thymeout don't worry, you're not being a downer at all! It's more because I've eaten almost nothing or sugar and water since Tuesday afternoon. Even a low-residue diet would be an improvement on that :-) My blood sugar will have been all over the place from drinking lots of squash and not eating anything, and that always gives me headaches, so I'm feeling pretty crappy just now. It should settle down again in a day or two .

It sounds weird, but it really does help to know exactly what you're dealing with and a plan of action

I agree. I'm just - well I'm sure I don't need to explain it to anyone here - doing that see-saw between oh, it might be ok, if it hasn't metastasised then I might just be looking at surgery + radiotherapy + a lifetime of scans and so forth. And if it has then I might not be able to help my children through the rest of the childhoods and into their teens and beyond. I'm scared.

And it's ok to be scared, but that's the place I'm in right now

OK going to do some work and focus on something else for a bit!

They had to stop the scope because they couldn't get any further (ouch!)

Yikes. Apparently mine is over 3/4 of the circumference of the large colon (is that what it's called in English?!? Anyway you know what I mean) and the doctor could get past and see that fortunately there was nothing above it. I was given some photos to take home (well kinda, I got a copy of the referral which includes pictures) and I've been looking at them from time to time to check that I didn't imagine it all and say to the tumour, get out of there you, you're not welcome!

It might sound odd that I want to keep seeing the photos but it gives me more of a feeling of control, that these tests and all the phone calls are happening for a reason, there's no mistake and I'm not making this up!

Ooh I haven't seen any pix! I must ask. My previous surgery was the removal of a ginormous ovarian tumour - NOT cancer - which took up most of my abdomen and weighed 2 kilos. I said to my surgeon on a ward round that we were having a sweepstake and needed to know the weight. He held out his hands as if he was talking about the fish that got away.

But I've actually seen this tumour in the flesh - literally. I was watching on the screen and suddenly there was this alien dark grey mushroom thing. He started poking it and must have hit my vagus nerve. As described in a previous post, mine is super-sensitive. The monitor started bleeping as my blood pressure dropped and the nurses rushed around with fans and cold flannels. I didn't quite pass out.

They keep changing the names of things. What used to be called your intestines is now the small bowel and the colon is the large bowel. I think. The important thing is how far the tumour has penetrated into the lining of the colon. They might not know for sure till after surgery. My classification was different from what they'd originally thought. Hence chemo. But no mets and clear nodes. I know 2 people who haven't had to have any treatment at all after surgery.

Do you know if yours is in the ascending or descending colon or the bit between them, like mine? I think the nearer the exit, the more likely you are to need a colostomy.

I tend to lurk these days (Stage 3 Inflammatory BC diagnosed in March last year, Chemo, mastectomy and radiation finished end of September, technically clear for now) but today is the one year anniversary of my double mastectomy (as well as being DS1's birthday which was rather unfortunate) and I'm feeling a bit wobbly. Not sure I really miss my boobs tbh, I don't mind being flat but the Lymphoedema and restricted movement that came after is a pain. I would love to say by now I'm sharp as a tack but I still get very tired easily and have some problems with memory, but I worked for the first time since diagnosis yesterday - a three hour mediation by Zoom which went really well - so maybe I am finally starting to find my new normal. Hi to the newcomers, and it's nice to see the people who I shared the treatment journey with pop up from time to time - and you are a legend @BloodyBridget keeping this going 😊 Not sure if it's appropriate to say that it is such a relief so see so many of us still hanging in there, but it is xx

Do you know if yours is in the ascending or descending colon or the bit between them, like mine? I think the nearer the exit, the more likely you are to need a colostomy.

The doctor told me that the fortune in misfortune is that it's high enough in the colon that I won't need a colostomy. So that's something. But honestly right now (I'm in the bargaining phase) I really don't care as long as it means I have a chance to see my children through to adulthood. That's what I've got all my hopes pinned on right now.

@Thymeout your experience all sounds very scary! Though perhaps at a certain stage you stop getting as scared. I'm really feeling like I'll be all outta fucks by the time my appointment is over on Monday. There's only so long my body can keep giving me these adrenaline surges.

I saw the tumour during the colonoscopy as, even though I'd had painkiller and a sedative, at a certain point I became aware that the doctor was walking backwards and forwards with something. He was putting tissue samples into tubes or whatever they put them in. I suppose my subconscious knew what it was even though I was really drowsy and not at all alert. I then started looking at the screen, 'pretending' to still be out of it (no idea why, I was drugged haha) and saw the tumour. I knew it wasn't meant to look like that inside my intestines so it was all very obvious to me.

I knew anyway (I just knew) but perhaps the experience during the colonoscopy helped because when the doctor said to me, "It's not good news," I said, "Yeah that's what I thought." Every single medical professional has commented on how calm I've been, but I just say "Well I pretty much already knew." That and I haven't yet got my copy of the book that tells you how to behave when you get a cancer diagnosis!

Sorry for my rambling and probably some rather strange English in there too.

@SnowsInWater amazing that you've worked for the first time since diagnosis. (My son's birthday is this week but thankfully it's not Monday when I get my prognosis. See, things can always be worse!) I obviously don't have any wise or helpful words for you but I'm glad to hear that you're hanging in there and able to see some progress and positives amongst all the stuff that's frankly completely shit.

My GP returned some ESA forms today and had written down my stage, stage 4 high grade the high grade bit I knew but my oncologist had not told me my staging.I did know what a battle I was facing but seeing it written down in such a blunt fashion, has led to many tears today.

@Lizdeflores I’m so sorry. Surely that should never have happened? I’d have thought that it would have been discussed with you face to face.

There’s really nothing I could say that would bring much comfort but please know that an internet stranger is thinking of you. If I could, I’d give you an enormous bear hug.

Thank you means a lot xxx I'm pretty sure it shouldn't of happened that way.

Definitely not. Everyone deserves to be told in person, with someone there to answer questions and provide support. I’m really sorry you’ve been let down like this.

Words on a screen feel so useless but you really are in my thoughts.

Liz - I hesitate to say this, because of raising false hopes, but could there possibly be some crossed wires?

You should have had a copy of any letter sent by your consultant to your GP. They only know what he has told them. All you've been told is that you have a serous ovarian cancer, which probably originated in your Fallopian tube? (V common. They think most do.) Have you had surgery yet? Or is this from a biopsy? You must have had lots of scans with your gastro/Crohns history which would have picked up mets but no one has mentioned them? They don't usually know the stage before they've had a good look round during surgery and the lab has pronounced on what they remove during a TAH.

I'm asking because I have a friend who, after TAH, was stage 2. Hers was just ovary and Fallopian tube. No further involvement. Then had 'belt and braces' chemo. Now just monitoring. Hers is a tricky tumour, too.

How did you get the results of your biopsy? Were you given a Macmillan nurse or a CNS? If you ring your consultant's secretary, you should be able to speak to one of the specialist nurses attached to the Gyne dept who referred you to Oncology for chemo.

Or possibly the 4 refers to the grade of the tumour, not your stage??? Mine is a 4A, but I'm stage 2. Somewhere along the line someone has ticked the wrong box? I've twice now had to correct the letters sent to my GP, once over diagnosis and once over surgery.

I know lots of protocols have been changed during covid, but this does sound a bit odd. Perhaps @Bloodybridget might be able to shed some light?

Thanks @Thymeout that is useful information I won't build all !y hopes on it but I will make some phonecalls on Monday. The biopsy results were given during a consultation with the oncologist and CNS. I haven't had any surgery yet( scan booked after 3rd chemo) and I assumed I would get more information after that. Tonight I'm going to meet some new friends and have a lot of wine.

@Lizdeflores that's just horrible for you, I'm so sorry. Grades of tumours only go from 1 - 3. You should definitely have been told what your stage and grade are, before there was any chance of you seeing something on a form, or anywhere else. As Thymeout said, I think it's usual for a copy of every letter to your GP from a hospital to be sent to you, that's certainly what happened in my case. But I didn't have a biopsy, it was ultrasound, bloods and MRI, then surgery very quickly - by then they were obviously pretty sure the ovarian growth was malignant, but that was confirmed along with stage and grade after surgery.

I hope you can get to speak to a nurse on Monday. In the meantime, sending love and supportive thoughts your way.

@SnowsInWater nice to see you popping in. Well done for managing some work, actually doing a three hour Zoom mediation sounds very demanding! Not surprising that you are feeling wobbly though - realising that the cancer has possibly lifelong effects is hard.

I am really tired so won't carry on tonight, (we have our 2 young grandchildren staying, they are delightful in many ways but my god, the noise, the mess) but as usual sending very good wishes to everyone here.

I'm not all caught up yet, but I got to the post by @Piggles39 about two days with no visitors, and thought I could chip in, having had several days' stays with no visitors at all due to COVID-19.

One thing that helped me was a friend reading to me over the phone, like a proper bedtime story! Right until I would fall asleep. I can't tell you what a difference it made! I will never forget it.

Just catching up on a very busy thread. I had such a nice weekend mainly outside and I even managed a twenty mile bike ride.
Tomorrow is Scary Scan day with CT chest abdo and pelvis with contrast. I have done the whole up and down rollercoaster of fear until I am bored now. My clever DD says think of it as a hand of cards you are playing to beat the cancer. By having the scan you are turning over a hidden card so you can play better. That helps!
It is so nice not to be feeling sick or hurting or tasting metal from chemo that I am euphoric this week. I even enjoyed a cup of tea today! Wooo!
Hope things go okay for everybody this week
Topo

Good morning everyone, I haven't posted for a while.

Last Friday I was diagnosed with Stg 3 breast cancer, this is my 3rd round of breast cancer and 4th cancer in total in under 10 years.

Still waiting for my CT scan but hopefully what I know now is as bad as it gets.
We are also waiting for HER2 status as this will directly affect the treatment path.

At the moment the definate view is chemo possibly before and after a mastectomy.

At the moment only my dh and I know as I can't face telling the kids or my parents yet. My dm is stg 4 and dwindling fast and it just seems so cruel.

It seems beyond unfair as I went through all this exactly a year ago with DCIS which was treated with a mastectomy. How can your body go from nothing except a couple of tiny specs to stg 3 in a year? It worries me it is to aggressive or that they missed it last year.

Anyone on here with positive stg3 stories, I could do with a little hope right now xx