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.

Hi all. Its been 2 weeks since I found out I have cancer and I first posted on this thread. I finally have my CT scan tomorrow, I don't know exactly when I will get the results but I think I'll call up tomorrow to clarify, it seems to depend on when the 'experts' are able to look at it.

The last 2 weeks have been so weird. I've been through phases of almost forgetting about it all and going about life normally, followed by sudden super low moments. The worst moments are when I think about the possibility of not seeing my little boy growing up, it breaks my heart.

I think I've also been grieving for my womb, even though they haven't taken it out yet! I see people out and about with their little babies, or pregnant women, and it suddenly hits me that I'll never have another child. I was hoping we would have another one in a few years.

Sorry for the low mood ramblings, but I'm just having a bad evening and needed somewhere to vent a bit. I desperately want to know the results from the scan tomorrow but at the same time I'm dreading it in case it's bad news.

@InOtterNews she is risen indeed, halleluia!
@Bearlyawake it is so hard. But in my experience, knowing is always better than uncertainty.

Sorry! Matt Hancock not Gavin Williamson is the Minister of Health, of course. How could I forget?

Just have to share this funny moment: constant argument in this house about teen DD using DH razor to shave her legs as it blunts it rendering it useless for his face. Tonight's exchange was epic. DH was giving off and told her ' stop using my bloody razor on your legs as it's blunts it and tears the face off ye'. DD's quick and authentic response. 'Sure I don't shave my face'. Even he had to laugh.

Wishing everyone a peaceful evening. 💕

@InOtterNews great stuff! I agree, science is awesome.

@Bearlyawake I feel for you. You really are going through one of the toughest times right now.

Can I just say: don’t let your mind run wild (I know, it’s practically impossible, but you MUST try) and don’t make assumptions about the treatment. I don’t want to give you false hope but you just don’t know what it might involve. Try to keep an open mind.

More than anything though, all of us here know that it’s just a really, really shit time you’re going through right now.

@gillmoregirl just wait until she’s older! I’m 47 and I’ve been tempted

I’m so short of sleep but managed a nap for an hour this afternoon. A colleague called to see how I was and we had a really good discussion, not just about my treatment saga but just normal stuff about her moving house, downsizing, ordinary fun non-corona non-cancer chat.
Was so nice.

Also another oncologist called with blood test results (all great, my kidneys and liver are up to the challenge of chemo) and asked how I was. I gave her the v short version and she apologised several times for the situation, reassured me that the staff on Friday would be great and would explain everything and support me, and... apparently there’s nothing in my notes about me being upset/scared of chemo? I could hear her typing away... ‘my’ oncologist is going to discuss things with me next week when she’s back.
It really lifted a weight off me. It’s definitely in black and white in the GP’s notes but 🤷‍♀️. I’ll let them fight it out!

@Thymeout

Sorry! Matt Hancock not Gavin Williamson is the Minister of Health, of course. How could I forget?

I’ve no idea. Remember: Gavin Williamson = your brother’s friend, and Matt Hancock is of course your sister’s first boyfriend with a car. It’s quite simple really.

@Bearlyawake Don't feel that you need to apologise for feeling low .You have so much to deal with its no wonder you feel overwhelmed.
I'm waiting for a date for my op, at nearly 50 I have very different feelings about losing my reproductive organs and my family was complete all I can offer is my love and virtual hugs.
I was offered psychology when I started treatment and that helps me .
I found that once the investigations started the results came through very fast in fact I still can't believe it's only been 3.5 months since diagnosis.
Good luck with the scan tomorrow x

Thank you for the kind words.

@LucyWarlowsRightHand I actually managed to have a candid chat with my DH this evening about my fears (have been avoiding this because I don't want to upset him). He managed to talk me down a bit and realise I am letting my mind go into overdrive!

@Lizdeflores thank you, I hope you get the date for your op soon. I think you're right and once I've got more information and treatment plan in place things should start to feel like they're moving quicker. It's been the longest 2 weeks!!

Morning everyone, I hope you don’t mind me joining you. I’ve spent weeks lurking here and reading the past threads too.

Im 47 and I’ve been diagnosed with HER2+ breast cancer. I’ll be starting chemo on Monday: 4 x FEC, followed by 4 x THP, with Herceptin continuing for 12 months. Then surgery and radiotherapy.

I’m doing ok with getting my head round all that, even if most of the time it feels like I’m watching it happen to someone else - not decided who plays me in the film yet though!

What is keeping me awake at night is that a shadow was found on my spine during the CT scan and I had an MRI on my spine yesterday. I appreciate that no one other than my consultant can tell me anything else but this is definitely the hardest part so far...

My husband knows, but I’ve not told anyone else. It feels like it is just feeding the drama IYKWIM. If it comes to nothing, then I can just have an extremely generous drink and forget about it. I have absolutely no symptoms in my back whatsoever, so I’m tying to convince myself that it is nothing to worry about, but I also know that they don’t just do massively expensive tests on people just for a laugh.

Thank you for just reading, you are an amazingly strong bunch of people and I hope that I can deal with whatever comes with the grace that you are displaying.

@LucyWarlowsRightHand - Thank you for the mnemonic and good luck for Friday!

@)InOtterNews - Halleluhjah for your Brave New Body.

Newbies - welcome. Positive vibes to help you through the waiting.

Hey @merlotbythefire.

Hopefully all is well, as you say nobody can give you answers until they get the MRI results back, but I have to say that you really don't know yet so try to keep an open mind.

CT scans can be a bit hit and miss - I have bowel cancer, and while mine showed no signs of metastasis to my organs (fortunately), the actual bowel tumour itself wasn't that clear and they had to do an MRI to figure out exactly where it was and how big it was!

It's true they don't do MRIs for laughs but they do do them to get clarity, and in our situation they do them whenever anything at all is unclear. Even if it's just a "probably you breathed too hard and it's gone blurry".

I'm sounding all calm and reassuring, but I spent an anxious few days or so waiting for scan results and wondering whether my atypical asthma, diagnosed last year at the age of 46, could in fact be lung mets. It wasn't. Sometimes coincidence is just coincidence.

My ExH - we split up a few years ago but have children together - and I did the same thing of not telling anyone else (except our parents) while we were waiting. It's so much easier, for me at least, when you can give people a clear story of "this is what's going to happen", and not just "hmmm we're waiting, everything's unclear right now." I've also found that, having been diagnosed with bowel cancer out of the blue at age 47 and with no risk factors or family history, it's very scary for everyone around me as well. After all, if it can happen to me it could happen to them! So for me it's helped me to be able to give the full story of [in my case] first there's an operation, then chemotherapy. It makes it less scary for other people as well.

Obviously everyone is different but that's been my approach. We're here with you!

@Thymeout thank you for the welcome and positive vibes.

@LucyWarlowsRightHand thank you so much for sharing the very calming explanation of your experiences. That really does help and I will just try and keep myself as busy as possible in the meantime. I hope that everything goes smoothly for you on Friday. You have been through a frankly baffling load of additional stress that you just don’t need on top of everything.

@merlotbythefire Lucy is right - the waiting for scans and results is the worst. My experience was slightly different, in that I was supposed to be going on holiday for a month or so. The hospital said I couldn't fly and need urgent tests so I had to tell family, friends, and work very quickly why I wasn't sunning myself on a beach.

Don't google - wait if you can to do your research. Once I had a diagnosis I reached out to appropriate resources for support (lymphoma actin, blood cancer UK etc)

No news from the New Otter today other than only managed 2-3 hours sleep. I can't get used to the white noise. Doc will let me having Zopiclone tonight. Neutrophils down to 0.5 - change is a coming!

Love to all. 👊💪

@LucyWarlowsRightHand, I’ve only got as far as your description of the utter ineptitude of the doctors, and I’m FUMMING 4 U babes (as they say on Facebook!). Don’t you wish you could just throttle them into some understanding?!

The feedback from the scans in hospital has been mixed for me: small mets to my brain, oh joy .
The main reason I’ve been so ill though is PNEUMONIA . I had no idea. Anyway, some high-dose antibiotics and I’m sufficiently better to walk unaided, so that bit is good at least!

Right, will catch up with others now...

Hi everyone, I was just looking for somewhere to post and stumbled across this thread. I have just seen my gp after finding a lump and she is referring me to the breast clinic. She had a good old feel around and apparently felt lumps on both sides but suggested one side was more likely to be due to bf. She said nothing about the lump I went in worried about and just kept saying that treatment options are good these days.
I am really panicking...can anyone offer reassurance? I don’t want to decode her behaviour/ words but she has left me in a panic.

@Robs20. Just to let you know I've been referred about 5 times over recent years for breast lumps that turned out to be cysts but Its hard when your waiting. My GP was also worried about one in particular but it was fine. I hope in your case the results the same. 🤞

Morning all. Just had time to read through the past few days' posts properly.
Firstly hello and welcome to @Robs20, I hope you get a referral to a breast clinic quickly and get good news - if not so good, there will be loads of support and advice available here. Also a warm hello to @merlotbythefire, I'm sorry about your diagnosis, and the anxiety about your spine - hope the latter turns out to be nothing. Good luch for starting chemo on Monday.
@Queenie8, hope your GP does manage to hurry things up so you get an appointment much faster.
@Bearlyawake, you had the CT scan yesterday? Do you know when you'll get results?
@InOtterNews, just thinking of you and sending, as always, very good wishes. How's food going down now, are you able to enjoy any of it (I know it's not haute cuisine!)?
@BitOfFun glad to hear the ABs have been somewhat restorative. But brain mets? Any talk of treatment specifically for them? Will you be able to get home for a while before the Fulvestrant treatment?
@ElaineMarieBenes that's a bummer re BARD1 and TP53 (neither of which I had ever heard of but obvs not good). You said something about insurance, so I hope treatment costs won't be an issue for you.
@balkanscot you had thrush last week, has it gone? How are you feeling today?
@Lizdeflores I just noticed your hysterectomy will involve some bowel surgery so will be a long op, it was the same for me although I just had a little bit removed and they were able to join it up again. But I was in theatre for about 8 hours, and had, I think, 3 nights in HDU, which was pretty cushy, actually, so lovely and quiet, with one nurse to two patients 24/7! Crossing everything that you do get a date within the next few days.
@KentishMama is your breast looking any better?
@LucyWarlowsRightHand good luck with starting chemo today. You are having far too much to cope with, every good wish for better times to you and your DCs.
@Skap have you had your mammogram results? Hope all ok.
@yoikes that's pretty rubbish, still not having a diagnosis, and delayed scans. Is it worth making a fuss or getting your GP to intervene?
@Redannie118 how are you doing? You were having a horrible time with rads a couple of months ago - hope things aren't too bad now.
Also waving at @Starmer, @citybumpkin, @gillmoregirl, @iVampire, @Lubballoo, @Lurkeycakewoman, @Squiffy01, @Thymeout, @Trumpton and anyone else who's around.

I had a bad night and got up at 5 to have breakfast! I might go back to bed now. DP and I had a sneaky outing in the car yesterday, drove to Epping Forest for a little walk. V few people around and plenty of space to keep away from them, it was beautiful.

It's quite weird anticipating the hospital admission and surgery with no idea of how I'll feel afterwards, but I'm sure the nurse who does the pre-op tomorrow will be able to give me some idea. This time I'm taking in my own reading light, and my warm dressing gown; I've often been chilly with those horrible blankets.

@Bloodybridget thanks for the mention! No news yet on new referral, I'll call GP this afternoon to see if they have heard anything.

I love Epping Forres, I'm not to far from there, very east Herts.

Good luck tomorrow 🤞🏻

Hi I got my pre ok assessment date for next Thursday so I'm reassured that the wheels are in motion. It's looking likely that I'm going to be in hospital on my 50th😥. I'm trying to look at this op as the opportunity for more birthdays.
Love to all x

Ah the food. Kind of you to ask @Bloodybridget

There is a plentiful choice. Though I question their thinking of serving fish and chips with what looked like steamed chips. Light bites and snacks available throughout the day.

But now I've got mucositis, I'm eating mainly soft food and a lot of ice pops.

Thanks for asking @Bloodybridget, I've been told to expect a call this afternoon...not feeling tense at all

Hey all,

Greetings from first chemo cycle (EC) day 4. I've no idea how I'll cope with the next three EC cycles now that I know. I need a pep talk please.

Chemo day: hit by a train, nausea, sleep. Day 2: just so headachy and nauseous, no sleep. Day 3: nausea slowly changing to heartburn, no sleep. Day 4: heartburn hell hell hell please shoot me. No sleep. GP just added Lansoprazole to my long list of meds, but hasn't kicked in yet...

Basically I think I just really need sleep. But this is hard. I was planning on being cool as a cucumber, but I'm not.

@bloodybridget I hope it's better. I'm not looking at it - haven't changed the dressing the BCN put on on Friday. I'll do it tomorrow...

Have read all updates and am sending poorly targeted but no less heartfelt love to you all.

xxx

The consultant from my local hospital called...things still need to be reviewed by the speacilists but he doesn't believe the cancer has spread outside of my uterus. Lungs and other organs look clear. I'm now waiting to meet with the speacilist to discuss treatment plan but I'm feeling a bit more positive.

@KentishMama hang in there, it will get better. I'm finding the 2nd week of each cycle is better than the first so far. (I'm on cycle 2 of EC at the moment). For cycle 2 they upped my antisickness meds which definitely helped. For the first week of both the cycles I've done so far, the idea of being back on the chemo ward for the next cycle has felt a stomach turning, but by the time I needed to do it for cycle 2 i was ready.
Further up the thread there was mention of fasting just before chemo to help with side effects. I hadn't heard of this but am going to ask the oncologist next week. If anyone has any links or info I'd really appreciate it!