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

Hi everyone.

Diagnosed April 2017 with breast cancer EST+ Her-. Mastectomy (clear nodes), radiotherapy and hormone therapy - Zoladex and Anastrazole. Trying to get mastectomy for remaining large lonely boob for symmetry.

I lurk constantly, and keep up with you all, but hesitate to post because I just don't know where to begin. And once I begin, fear I'll never stop.

Anyway, so much love to you all... I appreciate that it's a bit meaningless given you don't really know who the fuck I am

And Leslie I hope you feel you can go as deep and as dark as you need to. We'll be here with torches and hands to hold. It's almost impossible to talk about this stuff with real world people, and we have all come to realise that knowing is better than not knowing.

Echo the others @WhatWouldLeslieKnopeDo definitely don't stop posting or have anything deleted. This is what this thread is for, you've taught us all that. I had a friend who chose to stay at home who died from leukaemia and I think once she made the decision it made it easier for everyone.
Totally off subject but I am also loving the Xmas emojis as well!
Having a crafty vino as I feel ok. I may well suffer for it in the morning, but if you lot have taught me anything is carpe diem.

Thank you for all the concern for puppy’s little bits! He was a star (ok that’s a lie they said he was a massive wuss!) and he is well on his way back to his scampy little ways. This picture was earlier on, nowhere near so cute and sleepy now!

Leslie

It would upset me a lot to feel that you couldn’t post what you feel you need to on this thread. I know we can’t be there in real life, even though we might like to I don’t think you’d appreciate us turning up on your doorstep but you are such a stalwart support to everyone I think we’d like to be there for you in return in whatever way helps you.

Oh no. The dreaded cone! They can clear coffee tables with them.

Glad all went well Namechange

PMSL laughing at the pissed off parrots Aimlessly. Though the dog bed looks lovely...

Leslie keep on posting. I cut my losses on the square and stopped following the pattern. It'll be OK but it's not my favourite. I hope you got your square finished for your sister.

Sad to see 3 new posters on here tonight. Welcome to you all and I hope your stay here won't be a long one.

Thank you all :)

I had a bit of a wobble last night, but then I slept soundly so feeling refreshed this morning.

I did indeed finish my square TQ. Now I'm working on a scarf. Just before I got the pneumonia and stuff I offered to make scarves for all my extended family. So now the pressure is on to finish those luckily I'm using super chunky wool so they grow quite quickly. I've made one for my oncologist too, as a Christmas present. I wanted him to know I'm grateful for all he's done for me.

I hope everyone manages to have a relaxing weekend

Morning leslie I’m glad you have managed some sleep and are feeling brighter this morning. I just want to add to everyone saying post whatever you like. I think your plan sounds great and I’m so pleased it has brought you some peace. My lovely bil who also had bowel cancer died at home a couple of years ago. There were many friends and family visiting and life did indeed go on around him. The nurses coming into the home managed it very well.

Enjoy your knitting, I wouldn’t know where to begin. We’ve got some relief from the rain in Yorkshire so I’m heading out for some fresh air.

Aimless they take me about 3 days doing a few hours a day. I'm pretty slow and new to crochet and spend a lot of time undoing and redoing them

Welcome 3 and Fluffy but sorry you need to be here. The waiting really is the worst part, once you have a treatment plan in place you'll feel much stronger and ready to beat it

Standby please feel free to post whatever and whenever you need, that's what we're all here for

Glad you got a decent nights sleep Leslie and got your blanket finished.

I've been up since 5:00 throwing up really hope it's just a 24 hour bug as I'm supposed to be having chemo on Monday and it's already been pushed by a week due to being in hospital a couple of weeks ago

Oh no purple I hope you feel better soon!

Sorry to hear about the throwing up purple.

Hoping it’s passed off now and you get to have the chemo on Monday.

Xx

Not looking forward to chemo on Wednesday but equally will be glad to get the first one out of the way. Any tips lacies on what to take or expect as a newbie?

Thanks, I haven't been sick anymore so hopefully that's it.

Knicker your first chemo will be the longest as they put it through slowly incase you have a reaction (it's very rare so try not to worry about that bit) I take sweets, my kindle and some trashy magazines to pass the time. Make sure you wear a short sleeve top so they can get the cannula in and comfy clothes as you'll be sitting around for hours. At my hospital they bring sandwiches and soup round but it's not great so maybe take a packed lunch with you and drink as much as you can to help flush it through

It's honestly not as bad as you'll be expecting it to be, you may feel a bit rubbish for the 4/5 days afterwards but keep in mind it will pass. Just rest as much as you can

Hi Knicker

I always wear a t shirt with cardigan over so they can get cannula in. The only bits that I find a bit painful are the cannula going in and coming out but it doesn’t last long.

My appointment time has changed from afternoon to morning so I do what Purple does and take my own sandwiches.

I’m lucky that my husband has been able to come with me so he will get me cups of tea from the hospital cafe. Macmillan also have volunteers on my chemo ward who make drinks. I also drink water.

I take my iPad with me as I have books on it but don’t actually feel like reading much. I’ve got some noise cancelling headphones so sometimes I listen to music. I have 3 different drugs plus they do flushes so there always seems to be a nurse coming and checking or doing something.

The time seems to pass ok when I’m having the chemo. It’s the time waiting around afterwards to see the Doctor that drags as I just want to get home at that point.

I find that days 3, 4, and 5 after chemo are my worst days. After this I pick up quite rapidly.

knicker chemo is different for everyone, but it's not actually as bad getting it, as you'd think. If you're cold, the nurses will bring you a blanket, there's normally charity gift bags knocking around for patients, they'll prob bring food/biscuits/tea and water for you.
Of course bringing your own (non strong smelling!) food is a good idea incase the NHS sandwiches aren't that nice!
The nurses will prob sit with you for the first one, or at least keep a v close eye on you.
For me, the first three days after chemo are fine, but then I go downhill on days 4-12ish. After that I start to bounce back.

You'll get loads of meds to take at your chemo as well, so get one of those pill boxed with four boxes for each day of the week. (About £5 from Amazon) It's such a chore taking all the pills every day, so it's much easier if you organise them all once a week!

Thank you very much, it is very comforting yet heartbreaking that there are so many women who are going or have gone through this. I understand that everybody is different but I guess what I'm looking for is reassurance that I'm not overreacting or being weak. I was supposed to go to work tonight but instead I crumbled in my husbands arms. Now I feel guilty for placing more of a burden on him (I know he would never see it this way). Counting down until the 17th, when I may get some peace of mind and sleep.

Sorry, I fell off the last thread as I’ve been feeling pants due to the Taxol.

I’m Symphony, 54, OH and two sons age 20 and 12, diagnosed with Stage 2 breast cancer after a routine mammogram. Tiny 7mm tumour in breast, HER2+ with a much bigger affected lymph node in armpit of 23mm. After round 4 the breast tumour wasn’t detectable on U/S and the armpit one had shrunk to 11mm. Having round 6 of 7 lots of chemo next week. Been on Taxol/Herceptin/Perjeta since round 4 but it’s absolutely walloped me. I’ve been in and out of hospital due low WBC count and the risk of infection and really sick. Hoping for a change in the ‘mix’ this time. I also have a pulmonary embolism so surgery may have to be delayed.

I’m on my own this weekend as everyone else has gone to a wedding 4 hours away. I decided I wasn’t up to the drive and quite enjoying the peace.

3 I think all of our journeys are so personal and individual (despite many similarities in treatment) that you should tackle each day as you see fit. Some days I find keeping busy at work is best and some days I don't want to see a soul - there are no right or wrongs! I do recall right at the beginning that it all feels so frightening, and the thought of having to tell people ( and deal with their reactions) is daunting.
Feel free to unload here, all of us will understand the emotions you are dealing with right now. Your DH will likely be feeling he just wants to fix it all for you, which of course he can't, so allow yourselves time to absorb what's going on - my DH finds solace in an early pint with his brother some nights - whatever works!
Anyway apologies that I have completely waffled along

Thank you v much for all the pointers re chemo - I'm hoping my new portacath will negate the need for cannulas! I do feel a bit like a mutated Borg at the mo tho...

What do borgs mutate into????

borg - Computer Definition. A type of cyborg in Star Trek that devours everything in its path. Companies that dominate their field are called Borgs, and Borging is the verb. See cyborg.

A cyborg short for "cybernetic organism" is a being with both organic and biomechatronic body parts. The term was coined in 1960 by Manfred Clynes and Nathan S. Kline

1960! who knew... I'm sure you're lovely really KBG

I used to take lots of activities like crochet, puzzle book etc. as I got bored easily, but couldn't concentrate very well. Also snuggly socks as my feet would get cold. Layers are best as I always overheated later in the day!

3 you're definitely not overreacting or being weak! cancer sucks and this first part with all the uncertainty is really difficult to cope with.

Symphony glad you're enjoying some peace. Very sensible to give it a miss

Fingers crossed it's passed now purple

I haven't finished the whole blanket yet, though I'm making good progress I'm doing scarves today. Finished one and now a third of the way through the next. It's good to keep busy! I have various animals in pieces, but never finish any of them... I find them too fiddly!

My cousin visited today. It was lovely to see her, but I was quite tired and breathless so didn't chat as much as I'd hoped. We all watched a Christmas film together though

Dear all. I tend to lurk but this thread helped me last year so if I can be of any use. Was diagnosed with stage 2 bc in April last year. Had lumpectomy and sentinel nodes done on May. Unfortunately, margins not cleared to another surgery in June. Unfortunately, margin still not clear so operation in July ( I flew back from holidays to have it and then flew back on holiday again - there are advantages to kiving next to the airport). 1 splash of cell found 0.7 mm away from margin. By this time was fed up but my surgeon went against her colleagues at the MDT meeting and said one more margin clearance so had that in August. Yippeeee! She was right and had she not done that, I'd have lost my breast for nothing because actually it was clear. Had radiotherapy, now on letrazole and 6 monthly bisophosphonate.

If anyone wants to know about after effects of bc lump/margin surgery, then do ask. I found and find that the node thingy causes more problems. I became very good at fashioning a waterproof boob pelmet out of a plastic food bag and sticky tape!

@noodles44 - meeting up would be good. Radiotherapy suite at East Surrey is brill and rather swanky.

Hi flying wow bet that felt like an ordeal at the time! East Surrey sounds a darn site better than the Royal Surrey

KBG my port has been really good. I’ve found that they don’t use it if I have to go into A&E for anything but all the specialist cancer staff can access it for meds, drips etc.

I’m dreading the sentinel node part of the surgery as I’ve been told that the longest to recover from.