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

I'm pottering about as best I can :) got a bit of a cough at the moment so hopefully that will improve soon. The stairs are a struggle, but I'm OK on the level. I'm also taking my oxygen off some of the time.

ranout definitely the time for snuggling in front of the telly. How are you getting on with crochet?

newhere sorry about your diagnosis chemo is shit. Hopefully you'll start to feel better soon.

KeepCalm I hope your cold clears up quickly

About to trek up to Leeds (well, Bramhope actually - home of 3 famous people - guess who!) to see my father and stepmother. Slept really badly - upset stomach. I'm now having nightmares about the hospital telling me I've left treatment too late and that I can't go on the trial after all... Roll on Friday.

Thank you @purpleunicorns @WhatWouldLeslieKnopeDo I am very lucky to have lots of support at home. Chemo is every two weeks so sounds like I'll get a week of feeling myself before starting again.

Welcome Newhere, though sorry that you have joined us. The body does get accustomed to chemo and the first time is always the worst. I'm back on weekly from the 27th.

What regime are you on newhere? You'll soon get into a routine with the side effects etc.

TQ I hope your journey north goes smoothly and you have a nice visit. Sorry you had a disrupted night

Hello @newherebegentle sorry you've had to join us but the ladies here are ace. Am fairly new to this myself having only been diagnosed in September but I couldn't have stayed sane without them. Be kind to yourself

Home from Oncologist, she didn't have results of my MRI as it was only Fri. She had a feel of my lump and isn't convinced there is much change but I've not to be disheartened

She'll call me back in once she sees the MRI and if there's no change they'll do a CT scan and then have a think about changing the current treatment.

She's determined to treat the primary cancer and not neglect it whilst worrying about the secondary cancer. I'd just have liked her to have told me it was all one big mistake and it's actually a lump of chocolate that fell down my bra & stuck

Not great news but not the worst either so I very maturely cried myself round Tesco and am now home to cuddle some puppies whilst stuffing my face with halls soothers....

Ladies, your advice would be much appreciated! I'm due to attend my MRI this afternoon but have woken up with a rash, can't get through to the hospital where the MRI is due to take place. Breast unit can't see a problem but said to contact hospital, GP useless. Not sure what to do

Fluffy what type of rash/where etc? I reckon you should be fine to go ahead with the MRI if you're feeling well otherwise :)

KeepCalm sorry that it wasn't more encouraging news, but hopefully the MRI will show some shrinkage it's good she has a plan either way. I hope the puppy snuggles are helping.

@Fluffysunshinepants agree with @WhatWouldLeslieKnopeDo Unless it's a really fucking angry rash I'd still go. Am sure if there an issue they'll let you know

Puppy snuggles would be great leslie if they weren't too busy killing each other

Please delete if it's not appropriate-
I'm posting for my friend- she found out she had BC in April, primary BC, caught quickly but her op results showed had started to spread to the first lymph node? The doctor isn't worried about it but ther treatment was radiotherapy after surgery and now tamoxifen for 10 years. Everyone she's heard from if any spread to node has had Chemo? Now she's worried.

At first i wasn't sure if it was a reaction of some sort, but haven't changed anything or eaten anything different from normal, last treatment i had was the contrast for my CT scan but that was Thursday.

Possibly a heat rash? It covers my arms and upper torso, don't want to waste the appointment if they decide they won't do the scan

Hi @Hotpinkangel19 sorry to hear your friends news. Each individual case of BC has a different treatment plan depending on its grade and if it's hormone receptive (I believe) For example in my case they're doing chemo first and then might consider surgery as hormone treatment isn't appropriate.

Am sure her oncologist will have the best results in mind and Macmillan are a super resource at times like this

Nice day for a trip to Bramhope @TwitterQueen1 I love about 20 mins away on a certain moor! Hope your tummy has settled.
Hello @newherebegentle hope your resting up, as everyone has said drinks lots and lots and listen to your body. Sorry your here but I hope they have a good plan in place for you.
@WhatWouldLeslieKnopeDo I'm loving crochet but I'm a bit rubbish at following patterns I've just been making stuff up as I go along! One of the cats ended up with a scarf and hat last week!
Oh @KeepCalm, hope your feeling a bit better? If it helps I've had 5 lots of chemo and my lump hasn't shrunk either. However, it's kind of what I was expecting as as long as it isn't spreading the chemo is still doing it's stuff. I know it's hard though as the bloody lump could do one after going through chemo. Did your oncologist say whether they thought it would shrink? Mine were quite upfront and said there was a chance it wouldn't.
@Fluffysunshinepants I'm not sure what to suggest. Do you have a cancer nurse you can ask for advice if you can't get through to the MRI department?
@Hotpinkangel19 I've had chemo and mine haven't spread to my nodes (fingers crossed). As someone has already said we're all different so treated differently. I've met ladies in RL who's nodes have been affected and they didn't have chemo they had surgery and radiotherapy. If she's not sure about her treatment plan can she speak to either her cancer nurse or her oncologist?
Waves all round.

I'll point her in the direction of Macmillan. Thank you so much

fluffy - I hope you get to your MRI ok! I can’t remember if you are having chemo? If so, a rash might be one of those random side effects... I had a light rash all over my body after the first round (but rather randomly only on one side of my face for every round thereafter!!).

Waves to all, and especially fellow Yorkshire folk - hope you’re all enjoying some lovely sunshine! I’m on a train on my way down to London, and it is getting cloudier by the minute

@ranoutofquinoaandprosecco I think they'd hoped it would have shrunk BUT am delighted if it's not growing then maybe we've slammed on the brakes?!

She kept talking about treating the primary (breast) cancer and dealing with the secondary (lung) after because apparently I'll be living with that for a long time....

We'll know more when the MRI results are back and if she's going to change treatment she'll do a CT scan to see what the story is first.

I like her, she's upfront and no nonsense but with a lovely manner. I can't be doing with any pandering.... especially when she's feeling my boobs

Oh that's good Leslie, pleased to hear you're picking up a bit and not being on oxygen all the time must be a relief and give your poor dry nose a break. I keep getting random nose bleeds - possibly because I keep sneezing as I have no nose hair

They've only given me the paclitaxel today and not the carboplatin as my bloods show my kidneys aren't working properly. At least one of my stents are blocked so I'm need to speak with the urologists before my next chemo. Does anyone know if it's the paclitaxel or the carbo that has the worst side effects? I'm trying to think of positives and hoping I won't feel as bad with only having one lot today

Keepcalm surely the oncologist can't remember what everyone's lumps feel like so fingers crossed the MRI does show shrinkage. Oh those puppies are the cutest

I hope the scan went ok Fluffy

Oh TQ I was really hoping it was going to be one of the other trials for you instead of having weekly taxol will it be the same strength as you were on before? I hope the side effects are as minimal as can be but it's a bugger having to go through every week

purple sorry about the nosebleeds and your kidney. Hopefully they can get that sorted quickly! fingers crossed you'll escape the worst side effects

KeepCalm they are so cute

Fuzzy up to anything exciting in London?

Fluffy I hope you got your MRI

I'm feeling a bit wobbly so trying to distract myself with trashy Christmas films on Netflix and crocheting for my sister's blanket.

I hope the Christmas films help. Do you think your antidepressants are making much difference? I've found since being classed as terminal the doctors are happy to prescribe a lot stronger stuff than normal if they need to increase anything

My cannula popped out 5 minutes at the end of chemo so it ended up going through my skin rather than in a vein which was pretty painful, I have to use a hot water bottle on it 4 times a day for 20 minutes a time to keep the swelling down

Just had a call from the hospital who are going to try and get me seen within the next couple of days about my stents. They think I may need nephrostomy tubes if the stents aren't working properly. And I don't think they'll give me a general anaesthetic to put them in as I've just had chemo. It's going to hurt isn't it?

Purple I get the weekly taxo l regardless of which arm I'm in.. It's an added bonus! Bloody autocorrect on here changed wtf to egg and won't let me type taxol. I find out on Friday. Sorry you are having troubles...

Oh I see! I thought they'd put you in the trial you didn't want. Fingers crossed for Friday 🤞

keepcalm

dealing with the secondary (lung) after because apparently I'll be living with that for a long time....

I like the sound of that. Not the lung but but the long time bit! I’ll be so happy if someone says that to me! I want your oncologist- she sounds ace.

Way too much puppy cuteness

Hi everyone,

I have only scanned the thread (sorry) will have a proper read later when I am probably not sleeping...

I have had a mare since last posting. Both girls were off from school last week (youngest sickness bug Wed & Thurs, eldest uti on Fri) so spent last week not doing stuff I needed to do & running around with urine samples all over the place. I booked too much stuff in at the weekend as due to have op 2mo and have basically totally worn myself out with it all and have crashed out each night.

Today I went for a consultant appt that had been rescheduled but I was never told. I also had to wait to get my blood tested pre op but switched tickets with a guy who arrived much later than me so I could head to see the consultant (only to find I had no appt) then returned to the bloods place where I bumped into the guy I swapped with coming out and I had another 40 min wait...

Just as an added stressor (the cannot be helped) my Dad was up with the squits all last night, it is a bug as his friend has it too, so my parents cannot come to look after me as planned following my op 2mo, so I have been frantically calling on friends to have the girls and for someone to stay with me as I will have had a GA for the op. I literally haven't stopped and have spent much of today on the verge of tears and freaking out! I think I have sorted everything, just about to pack overnight bags for the girls and a just incase hospital bag for me too. All I have written to take is a dressing gown and slippers, my mind is blank apart from a book & my iPad and undies. Am bricking it as feel totally disorganised and not ready...

Sorry moan over, will read the thread properly later. X

Bloody hell @noodles44 it's about time you had some decent luck.
Hope you've got your feet up now and relaxing. Wish I could help in RL. Sending you lots of positive thoughts and anti bac!!

@noodles44 are any of us close at all?? I've got the NE Scotland covered if that helps? 

@ranoutofquinoaandprosecco agree completely if we can get the aggressive primary to f*ck off that would be just peachy