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.

What a dreadful way to find out @LucyWarlowsRightHand How long before you can talk it through with someone?

@TreeWitch - that sounds like an excellent plan!

My DC are old enough that they can be left to shift for themselves, so I’m on the sofa, dog dozing on my feet, sipping a plain tonic (pretending there’s gin there as well)

Oh @LucyWarlowsRightHand, that is dreadful! Should never have happened. I think getting in touch with your anger is the best coping mechanism at the moment. As you say, it's not like it's terribly bad news, but the shock of getting it when you weren't expecting it and were off your guard must have knocked you sideways.

When is your appointment? Do you have a nurse key-worker who could ask your consultant to give you a quick phone-call to tide you over till you see them. There will be something positive to say. Yes - rubbish to have to have chemo at all, but it's at its most effective at your stage.

I think @Squiffy01 is having chemo now. She might be able to help. I do know that it's not as brutal as for breast or ovarian.

I’m so sorry to be selfishly hogging the place tonight but I have another question. My biopsy site is bleeding again. The hospital covered the steri strips with folded gauze then a sticky clingfim like plaster. The gauze is now red with blood but thankfully not leaking out sticky covering. I don’t know what to do, should I just wait till morning and contact the nurse at gp surgery?

I’m afraid I don’t know Treewitch but wanted to let you know I was here!

I’m not in the UK so our system is different here. If nobody’s around here tonight - do you have a contact person you can call? Or is it worth calling NHS Direct for advice?! I’m just thinking of my own situation when I was concerned about my stitches last week; talking to my GP was immensely reassuring.

The advice I had was

• direct pressure for 20mins

If that doesn’t fix it

• ice plus pressure for another 20 mins

If not fixed A&E or minor injuries if you have one handy/open. (It would be A&E for me as haematology get a bit excited if I have excessive bleeding, but it’s not so worrying in others)

Change manky outer dressings only when it’s stopped, and leave the steristrips alone

Why does this sort of crappy stuff always happen at night?

(Sorry I mean calling 111 obviously.) I just get the idea that getting professional advice tonight might ease your mind a bit.

Cross-posted

And yes, if you’re not sure ring 111.

They tend to be a bit risk averse, so if they say safe to stay put and ring clinic in the morning, then it definitely is.

Hope things improved overnight @TreeWitch

I feel as if I’m a bit on the medical treadmill this week, as today’s schedule includes bloods, ECG and orthopaedic outpatients

Fortunately they have confirmed that haem outpatients next week will be phone appt! (less to-ing and fro-ing plus it means I have another 12 weeks to try to lose at least some of the lockdown weight)

Morning, I shouldn’t complain at all. What I am going through is nothing in comparison to you ladies.

I fell asleep after I posted last night which was probably the best thing I could have done. Site still looks like it’s bleeding (no white gauze left now and feels squishy) will call and try get an appointment with nurse at GP today

Morning, I shouldn’t complain at all. What I am going through is nothing in comparison to you ladies.

Nonsense. We all have our problems and just because someone else’s might be bad too doesn’t make our own go away. Please feel free to discuss your situation here

Oh, regarding my unexpected stage 3 diagnosis, I’m going to wait and see whether the GP calls me on her phone rounds today (passive aggressive, moi?) and if I’ve not heard anything by about 1pm I’ll call them. I was just going to leave it but I slept terribly last night and cried so much; it’s sensible to ask for an explanation. My appointment isn’t for another week, I can’t stress myself out for that long!
I wasn’t even this upset in the time between colonoscopy and diagnosis/treatment plan

• it’s the lack of explanation and support.

I might also call the number I have for the nurses at the hospital. They have an answering machine and will call me back same day. Someone’s going to get in trouble but that’s not my issue 🤷‍♀️. Imagining my message now... “Erm, somehow I’ve been sent a copy of my notes with no explanation or support. I now know I’ll be needing chemo and that there’s a certain amount of node involvement but no idea what any of it means for me. Could someone call me back please?”

I mean...
Well these things happen but they’re going to have to scramble now because I’m not spending another week like this!

@LucyWarlowsRightHand what a rubbish way to get that news I also found out information about my staging via a administrative error It just adds to the pile of shit cancer is. You and others were very kind to me so I'm sending love and hand hold right back to you. I did find talking to the CNS helped me ,she explained the staging to me and apologised to me for how I had received the news.

The investigations for. cancer seem to particularly cruel,is it just women that get sensitive parts of there body clamped and needles stuck in them?does this happen to men? This may be a warped fantasy of mine, but I hope the image of a penis clamp might brighten some days! I hope everyone who is sore and suffering has a better day.

So many of us are waiting for results,surgery and treatment and the waiting game is hard. I've had 3 chemos and I'm waiting for a surgery date. I had a scan on Monday and they have a team mtg today when it will be discussed so hopefully I will get some news by next week.

One more days till school starts I need to check we have everything we need, 6 months I've had to prepare for this and I'm still doing the last minute panic! X

So sorry that you heard that way @LucyWarlowsRightHand. What a rubbish mistake. I hope you've got to speak to a real person by now, and that you have an idea of what treatment will involve.

@Lizdeflores, your last minute panic hit a chord with me. DCs 2,3 and 4 went back to school today, and I am knackered due to a last minute frenzy of sorting, labelling and ironing uniform. Just have to do DS1s shirts now (he's back on Friday - hurrah! He is becoming feral......), but - for today- I am slumping in the chair and making the most of some peace and quiet.

Glad investigations are done for you @iVampire and @TreeWitch. Hope you don't have long to wait for results.

Last day of round 2 of chemo for me today - a quarter of the way through! Am moisturising my hands and feet like crazy @Thymeout - they've never looked better. And side effects really seem to come and go, one day tingly fingers, the next sore mouth, then fine, then .......

Hi,
I've looked through some threads to try and get about of insight. I really don't want to waste anyone time :(
I'm post menopausal (early menopause at 44), and have started bleeding, called docs this morning and now on two week wait referal.
I feel sick, I really hope this turns out to be a non issue. Has anyone been in the same boat?

This thread looks so busy again, it got quiet for awhile. I am so so rubbish at keeping up to date I just go into myself and give up. @Thymeout thanks for the shout out for @LucyWarlowsRightHand post. I have finished chemo I was going to say recently but actually thinking about it it was 5 months ago! Finished at the end of March op at the end of April am fully recovered now apart from the odd bit of pain when the toddler runs into me. Your key hole sounds the way to go with reecovery I was supposed to get it but covid would not allow it.

I'm so sorry you got awful news in such a shitty way I'm not surprised you are struggling with it. I was also stage 3 but had my chemo first as my tumour was large and bulky and the surgeon was worried he wouldn't get it all if they didn't try and shrink it down first.
Chemo doesn't have to be dreadful people react so differently to it. And I think I would have been much better just on the tablets but I was having infusion as well which gave me most of my bad side effects.
Did you end up calling them today? Hopefully you will have more info and a plan soon.

Physically I am doing well, getting down about the weight gain that I can't seem to shift cause I can't stop stuffing my face.
Mentally I am in a bad way not coping well at all. My toddler keeps saying 'mummy sad again' which is breaking my heart.
I have my 3 monthly blood test in a few weeks.

Hi @notthedressiwanted

So sorry you’re here, but welcome to the best thread no-one really wants to join. I hope your stay here is only brief, and we’ll be delighted to wave you on your way

I can’t help with gynae cancers, but I do know how blimmin awful it is when you’re in the testing limbo, with a good chance that something is badly wrong. It really is up there as one of he most stressful times there is

What sort of support do you have in RL?

Thank you iVampire.
A lovely lady has reached out to me (on here), with similar, albeit several years ago. It's good to know how it went for her, and I'm optimistic I'll be the same.
Ok really I'm thinking bad but hoping best.
Have DH who is great and told a work colleague as obviously If I get an appointment im going to it, regardless.

Hi @notthedressiwanted, I don't have any gynae experience but glad to hear you have heard from someone who's been in the same boat and have a supportive DH and colleague. I received some great advice myself further up in this thread re waiting for information and results and the "knowledge is power" approach has definitely helped for me. And although it's clearly a personal thing, and difficult at times, being hopeful is important for me too.

@Squiffy01 I think the psychological toll of all this can't be underestimated. I am no expert and don't feel I can offer practical advice but just wanted to say i hope you can find a way to be really really kind to yourself. And I don't think it is a bad thing for children to see their parents showing their feelings. I bet your little one is super empathetic. Sending you positive thoughts.

@LucyWarlowsRightHand hope you're able to get some support very quickly now

I had a call with my surgeon today. I will definitely need a full mastectomy, which is what I was expecting them to say. The main thing now is whether the chemo can reduce the cancer in my lymph nodes and hope to minimise the surgery required there.

I'm feeling a bit apprehensive about the chemo (EC) tomorrow. Thinking I will give the cold cap a go if I can and have painted my nails a dark colour which I read might help protect them(?!) - any other advice gratefully received!

If you are cold capping then remember to take some paracetamol or similar about half an hour before. It really does help to take the edge off the discomfort for those horrible first fifteen minutes. I also made a point of taking a soft hankie or scarf to go under the chin strap as it has to be tight and can be uncomfortable. Also, when the cap is on press down the crown at the top to make sure there are no air pockets. Cold capping worked really well for me and I hope it works as well for you.

Greetings all. I was too busy having a fun birthday to post. Best news - there is alcohol free gin that actually tastes good and feels like a treat. My DDs have me sorted out nicely!
They made me a video of messages from lots of friends and family which was lovely and made me cry in a good way! I’ve never been more popular thanks to cancer
Also my friend is riding Lands End John O’Groats and back to Lands End to set a women’s world record. I am on her shirt! It is so exciting watching her dot progress on the map. She will finish tonight after 11 days with a very sore bum and make cycling history.
All this has distracted me nicely from the 3rd FEC chemo I had yesterday. I now feel the usual nausea and headache and tiredness but it was the last one and next time it will be T and HP which have a wondrous new range of side effects.
As it’s working well I am going to shut up and get on with it and be grateful I have a curable condition.
I read above about the frightening scans and procedures which you are going through and reach out to offer some strength to endure what has to be endured. I think about my kids and my husband and grit my teeth for them.
alcohol free for anyone who needs it!

Hi all,

Sorry about the radio silence!

@Lubballoo I'll be thinking about you tomorrow and will send you warming thoughts while you're cold capping. I'm going to join on you EC in about 3-4 weeks or thereabout because I can't let you have all the fun drugs to yourself...

@LucyWarlowsRightHand That is just rubbish. Please do your best to at least guilt trip the guilty parties so that they bend over backwards to make it up to you.

News from me: I've been arguing with my surgeon about a massive seroma in my armpit. She's been telling me to ignore it because aspiration carries a slight infection risk, but after a very miserable long weekend, I went to see the breast cancer nurses and they were appalled. They then argued with the surgeon who grudgingly agreed that it could be aspirated under ultrasound. The radiologist then told me it was a 'very large seroma' and that I... wait... "should have asked to have it drained sooner". Seriously! I was so mad. I think my surgeon treats the illness, but not the patient. I'm going to stand up for myself now.

Seeing the oncologist for the second time next Tuesday so that she can tell me more about chemo. Dreading it, but I am starting to come to terms with the idea, and I kind of want it to start asap as the thought of still having cancer cells floating around my body is giving me nightmares. But I think it'll be a few weeks.

Wishing you all an uneventful rest of the week, and sending love!

That is just rubbish. Please do your best to at least guilt trip the guilty parties so that they bend over backwards to make it up to you.

I'm way too exhausted with it to bore you with the story, but as I'd expected I didn't need to do any guilt-tripping whatsoever. The assistant was incredibly sympathetic, put me through to the doctor, the doctor couldn't apologise enough and said they would be having a review to make sure it couldn't happen again. The staff are meant to check everything before it gets released to the patients and somehow this one just got through. She didn't try to make excuses but honestly, I can understand it (especially at the moment when they're flat out).

The part I COULDN'T understand was how horrible the hospital nurse was to me. I won't go into the details - it doesn't matter anyway - but my GP has made a complaint. She also got a surgeon to call me back within 40 minutes to talk everything through with me (the nurse had told me that I was SOL and would have to wait until next Wednesday).

Anyway. I'm feeling slightly better today (not even so much about the bad news, but about the horrible rude nurse, who all but hung up on me at the end of the conversation - she didn't say goodbye!) and hopefully will be feeling positive again within a few days.

@KentishMama I'm sorry you've also been dealing with unhelpful people. The radiologist then told me it was a 'very large seroma' and that I... wait... "should have asked to have it drained sooner". I mean! Are you as obviously outraged as I am when people say stupid things? My vet told me off because my cat was on painkillers (prescribed by his colleague). "These are VERY strong painkillers!" I said, "Funnily enough, I didn't prescribe them myself!"

Thank goodness most medical staff are absolutely lovely, but there are certainly some who seem to have lost the plot completely.

I'm now awaiting my first appointment with the oncologist (date TBD). No rush as I need to fully recover from surgery first. My GP has recommended that I move to a well-regarded cancer hospital we have here in Amsterdam - as she said, this kind of stress [from nasty admin staff] is very bad for your health.

I'm too tired and self-centred tonight to comment on all the updates but I've been reading them all, and your comments really helped me on Tuesday night. I thought I was ok but when I went to bed I couldn't sleep and I cried and cried and cried; the worst night by far since diagnosis. The little notes people wrote here really helped. So thank you

Lubbaloo I finished chemo 2 weeks ago I had 3 EC and was told it doesnt usually affect your nails so there was no need for dark polish I used opi nail envy throughout my treatment and it done just fine and protecting my nails if anything had to cut them down more often. I lost my hair because cold capping wasn't an option at the time because of covid. I didnt really have many effects I was always tired I was consipated and stopped taking anti sickness after 3 days every time.
It was abraxane (the taxol) that floored me the bone pain was something else. I have peripheral neuropathy in my hands and feet its getting better but still hurts and is annoying. I had to take anti sickness for at least a week after each one and the constipation got worse.
Take one day at a time not every day is the same if your worried about anything at all phone your red card number they are brilliant and nothing is too much trouble. Try not do too much you will get tired really quickly even when you feel like your ok

@Lubballoo, I'll be thinking of you tomorrow- one tip I've heard for cold-capping is to take a hot water bottle (or equivalent, probably better) and a lollipop for distraction!

I'll be going in to the cancer centre first thing for a CT scan on my liver (it was going to be an MRI, I don't know why that changed) to see if it has spread beyond my bones.

@Squiffy01, I'm so sorry that you are having a tough time emotionally. It hits all of us in different ways. I strongly recommend distraction, personally! Do you have a named nurse you can talk to when it gets too much?

I wish I could reply to everyone, but I'm with my DH and trying to follow a subtitled drama! Love to you all.