Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

TQ here
Stage 4 ovarian cancer, dx March 2017. chemo (Taxol, Carboplatin & Avastin) followed by radical hysterectomy and debulking, more chemo. Recurrent Nov 17. Back on chemo (Caelyx) Jan - end May this year. Recurrence August. Starting 3rd line chemo on a trial at the Churchill Hospital Oxford on 27th December, so at least I'll be able to taste my delicious Christmas dinner!

Age 59, 3 DDs, one at uni, one recently graduated and working - both at home. Eldest is with her partner near Leicester. Had to stop working but fortunate to receive sickness pension from work.

Purple and Leslie I'm sulking this morning as my latest square looks a bit of a mess. I bought a whole load of wool yesterday to see me through the holiday.

I was dx 2 years ago aged 44 with Stage 3/Grade 3 triple positive breast cancer, with spread to multiple nodes. I had mx and recon, chemo, radiotherapy, herceptin (finished March this year), ongoing bisphosphonates and exemestane, I was on zolodex but had oophorectomy earlier this year. I've recently started one year of extended HER2 treatment, neratinib, which isn't available via NHS but I got it after much badgering of oncologist via a managed access programme. My DP died almost 3 years ago with renal cancer, so the past 3.5 years have been 'quite something.' Our DS is 10 and an absolute superstar and although DP and I weren't married, his DDs are definitely my DSD's.

I'm not the sort of patient who does not do what the doctors say, and strongly believe I've had better treatment by questioning the standard plan and asking for more. I'm also very interested in integrative treatment - NOT eating broccoli and shoving coffee where the sun doesn't shine! - but repurposed meds and metabolic pathways especially. Nothing that's not backed up by studies and PubMed!

Jeezo, that was long! Felt like writing a dating profile :) not that I've done any of that for years!

I've been a bit more active here lately as I feel I'm back on the treadmill, although it is by choice. 4 weekly bloods and oncology visits, feels like I'm right back where I was 18 months ago. I'm dealing with a few side effects, but not too bad at all, especially compared to some of the lacies.

Leslie, I'm sorry that you've had such a shitty time of it lately, and I hope you're doing as ok as you can. Gentle hug. And more gentle hugs to all of the lacies too.

Good afternoon lacies. Hope your all as ok as you can be. @Pandoraslastchance I really want to hear that your being sorted out! With your transfusion, meds and transport.
@WhatWouldLeslieKnopeDo good to hear your feeling a bit better.
At the moment I'm feeling ok after chemo on Wednesday, currently sat in my nice warm car waiting for my kids to finish school! Fingers crossed the new 1 injection to boost blood count (rather than the 7 I had last time) is nicer to my system. I'll report back!

Hi Lacies not posted for a while but I do lurk! Currently resting up having just got home from having my portacath fitted so thought I'd catch up.
45 with 2 DDs 12/14 and diagnosed with breast cancer in April following a routine mammogram. Lumpectomy and rads followed. Started tamoxifen. Then found a lump in the other breast in August and chose a mastectomy. Results showed spread to one lymph node so I start 6 rounds of chemo next week (hence the port) I think cannula insertion has become top of my list for unpleasant things...

Can't remember which of you were planning a meet in Crawley but perhaps next time I might be up for joining you - I live in West Surrey but work in Sutton.

So glad to hear you feeling a bit brighter Leslie - I am also convinced you have a chart; I can only answer one thing at a time

Hello

I’m Amanda. I’m 44 and have three sons.
I was diagnosed with appendix cancer (Pseudomyxoma peritonei. PMP for short) back in January 2018.
I had an operation in May to to remove ten organs (Full hysterectomy, gall bladder, spleen, rectum, omentum, lots of colon, bit of vagina, etc) my liver and diaphragm shaved and cauterised, HIPEC (Hot chemo poured into my abdomen) and the ultimate sacrifice - my belly button!

I now have a stoma - aka the Angry Little Foreskin due to its bright red colour and shape. It’s an ugly little bugger. I literally do put a bag over its head.

Unfortunately the op didn’t get rid of all the cancerous cells and pathology results showed my cancer to be “Aggressive and fast growing”. I had three rounds of chemo but felt so unwell and lost a lot of weight after the third that my Dr wouldn’t give me the forth round and a CT scan showed it hadn’t helped anyway.

Cancer is in my abdomen, on my liver and during the chemo spread to my lungs. There is no other treatment now (Was offered another type of chemo but Dr said it’s unlikely to help) and was told that I won’t see another year. How many months I have they don’t know - will just have to see how this cancer parasite decides to play things.

Not being miserable though. Pointless getting upset about things you can’t change. This will be my last Christmas and I’m determined to have a good one!

I have had a lump in my breast for around a month, yesterday following many tests I was told that the doctors believe it to be breast cancer. I have 10 days to wait for my biopsy results but in the meantime I would like to know what to expect so that I'm ready. I want to know what is best for my husband and children. Thank you in advance

KnickerBocker - Can I call you KBG for short?

It’s Noodles and I planning to meet up in January. Would be great if you could come along too! All welcome!
We’re thinking of meeting near Gatwick so hopefully easy to get to for anyone else that would like to join us.

How are you today Pan and Leslie? Sending best wishes to you both.

Purple - Your woolly zoo is absolutely brilliant! Such a cheery looking bunch. They’re all adorable. It must be so satisfying making things that are so lovely! How long does each animal take roughly?

@3andnotcounting when you get the biopsy results they will tell you if it definitely is cancer and how they propose to treat it, it all depends on the size, grade etc and if they think it's also reached any if the nearby lymph nodes. Is there anything in particular you want to know? I'm not an expert but there are lots of people here who are having various forms of treatment who might be able to help

Hello, just starting the journey, diagnosed last Tuesday so currently undergoing tests before meeting the oncologist on the 17th for full diagnosis and treatment regime.

Amazed by the positivity and dignity displayed in these posts, gives me hope for the future and courage in the face of what is about to happen

3 and Fluffy So sorry you find yourselves here.

I think most of us would say the waiting for the full diagnosis and treatment plan is the most awful part.
Once you know for sure what’s wrong and how it’ll be treated it feels like a weight has been lifted!

Oh, and in the meantime remember that Dr Google is a Quack so try to stay right away from him. x

Aimlessly is VERY wise. Not knowing is the very worst feeling. We all remember it well. Once you have a plan (and these oncologists have LOADS of them up their sleeves you are back in control and can crack on.

As hopefully you’ll see from this thread life totally goes on. It’s a different path maybe, and some of us a limited time, but if you do end up in our club you will still laugh, plan, have fun, get on with normal stuff, moan about mundane things and everything else.

Oh NameChange you are kind but I’m not wise. I’m completely dopey most of the time!

DP has now banned me from ordering anything that requires measuring as I ordered new swings for our parrots and when they arrived they’d only be good for sparrows. Small sparrows. They didn’t look like that in the picture.
Ordered a new dog bed and it’s the size of a single mattress! Didn’t look like that in the picture.

3andnotcounting as the others say, the waiting is the worst bit. Once you know what's going on you'll feel more in control. It's natural to want all the answers. There are so many variables though, it's hard for anyone to say what is likely to happen - treatments will depend on the biopsy results and staging etc.

Oops Aimlessly the parrot doesn't look very impressed, but the dogs looked very pleased with their enormous bed!

KBG I hope your port heals up quickly. It should make things so much easier with treatment. I've been very grateful for mine over the past couple of years!

ranout glad you're feeling OK so far. And fingers crossed for the injection. I am starting mine on Monday - mine are alternate days for five days. I've not had these before, but I do Fragmin injections every day so hopefully they're not really any different...

Flippy I'm sorry you're getting side effects, but glad that you've managed to get the drug :) you've been very proactive.

Caz I hope you're resting up. It's good your DSD is there. Sorry the surgery was so stressful, but glad that it's all done and dusted now. Fingers crossed for your results

TQ have you managed to sort your square out? I'm knitting one at the moment. Trying to get it finished in next hour or so as my sister is coming home and it's for a blanket for her. It's a surprise so will need to hide everything before she arrives! :)

Waving to everyone

I saw my hospice nurse today. I had planned to go into the hospice at the end (I visited it a while ago, and it's a really lovely place). But I've decided I'd rather be at home, so that family life will just sort of carry on as "normal" (well, as normal as can be when someone is dying in the house!) around me. The thought brings me a lot of comfort. And I'm glad to have the plan in place now. She said they can get me a hospital bed and any other equipment I need within a day when the time comes. Also this means my district nurse team will care for me, and I already know how wonderful they are. I hope it's OK to talk about this here. I know it's the dark and scary side of cancer, and the one that hopefully few of you will have to face, but I've found that it has massively helped my anxiety to have plans in place and know roughly what to expect. But apologies if this upsets anyone please let me know and I will ask for my post to be deleted.

No Leslie you are not deleting anything. I totally understand what you mean about wanting home and normality and all that.

Leslie don't you be deleting anything! I love how honest and open you are about everything and I think it really helps people know about the practical stuff that needs to be done but doesn't get talked about. Although I have every faith in the chemo tablets when you get back to taking them so I'm expecting you to be around for while yet

Aimlessly KBG is absolutely fine! Post when you know a date and venue and I'll do my best to join you.

Leslie I'm very conscious of having a foreign object just under my skin and they've stuck the top plaster down too tight so it's pulling on my neck but actually the procedure itself wasn't bad at all. The lovely doctor talked to me all the way through! I'm just hoping it will be ok to use on Wednesday...

You should not be apologetic for posting about what you're dealing with right now - that's what we all are doing and what the thread is here for! Sounds like your team are well on board with your wishes and are very supportive which must be such a relief. You've been a massive support to so many people and the very least we can do is the same in return

Ps just found all the wonderful Xmas emoticons... but what is this ??

Thank you everyone :)

I hope you're right purple lots of people do get good results on them, and supposedly I'm in the group that "should" (statistically). Just need to not die of pneumonia first

Namechange how is puppy after today's ordeal? Is he sulking at you?!

KBG they should definitely be able to use it on Wednesday, though it might be a teeny bit sore. The doctor put a needle in immediately after inserting my new port and it was fine.

Also you can ask for a numbing cream to use beforehand, but I gave up with that as apparently it makes the skin tough over time, and I found that it really is just a tiny, tiny pinch when they put the needle in, if I can feel it at all

That’s a tennis ball, left over from Wimbledon. Is one of the other Opens on at the moment?

KBG If we get into the habit I’d calling you that, I just know I’m going to misread you as KGB and ‘see’ you as exotic spy.

Please don’t delete a thing Leslie - I cannot begin to imagine how tough planning for the end must be. At least here you have company - including from others treading the same path. My tuppence h’aporth for you current planning (based on a relative’s experience) is to get a hospital bed at home earlier not later. Get comfy in it, start to see it as just your bed.

Thank you Leslie, I'm cuddled up on the sofa with DD watching daft YouTube videos. Don't worry about posting about dying. I had a friend who died from leukemia and he said none of his family would talk to him about it, but he thought it was worse not talking about it so we had quite a few conversations about 'the end'. I'm finding out now that I have cancer that trying to keep things normal, laughing and talking about everything seems to be the best way to cope x

Vamp I misread it myself as KGB sometimes! Definitely no spy 🕵️‍♀️ I am not subtle enough for that 😆

You post away Leslie!

You are so kind and supportive to everyone on here and you can post what you like! Don’t worry about upsetting anyone - death comes to us all.

I’m so pleased you feel better knowing what to expect and what the District Nurses can do to help. Uncertainty is awful. x