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

Bloods didn’t improve so I was one of those people being told in front of the whole chemo room that I wasn’t well enough! Seeing consultant in Jan to decide whether to reschedule this round (which was 8 of 8) or just crack on with whatever is next on the magical mystery marathon of cancer thank you all for checking in with me. I took it better than I did last time they cancelled my chemo (when a nurse got cried on!)

Oh no, sorry to hear that Namechange. How do you feel about the delay until January? At least you won't feel rubbish over Christmas

noodles well done for getting out. I'm sure your daughter was thrilled that you were there! I hope you enjoy the flapjacks and scraping out the condensed milk tin. I'm taking my cheese-loving cousin.

I hope your drain calms down soon. It must be very annoying having it attached all the time!

Oh no namechange hopefully as a flip side to this you will feel pretty good over Christmas and not be having any side effects

My drain is in a bag looped around my neck Leslie it hides it pretty well as the kids aren't keen on the look of it. I will be glad when it is out and I can have a proper shower too. It isn't quite the same using the combination of a handheld one and wet wipes!

Oh no Name Change. Not good to have it rescheduled when you are mentally prepared to have it done. The only comfort I am trying to think of if mine doesn’t go ahead tomorrow is at least I’ll be able to enjoy the food over Christmas.

Noodles. All my lymph nodes are coming out on my left side as apparently there are a lot “involved”. Is there anything you think I would find helpful to have bought preparation wise? Do the hospital give you the bag thing to put the drain in?

Thanks everyone. Not happy about it really, but yes I will eat and drink like crazy over Christmas now that I’ll be drug free. I keep reminding myself that the plan for this cycle was 6 and it only got pushed over to 8 because I was tolerating it quite well. So the last two were always just a bonus I guess.

Bonus chemo! What have our lives become

Name changed. That must feel a bit better psychologically speaking because it’s not like you’ve “missed” one as such? Hope you can relax a bit and enjoy a Christmas before you get back on the bandwagon of treatment in the new year.

It’s such a dilemma isn’t it because we want the chemo to kill the cancer cells but also like the time we get without the side effects.

No news from hospital so that merits more puppies frankly

mrsT I also had all my lymph nodes out. I have a heart shaped cushion sent to me by purple which has not gone far from my armpit as it really does stop your upper arm/side rubbing. Check with your breast cancer nurse if they do them at your hospital, but if not let me know and I will forward mine on as doubt I will be as attached to it by then! They provided the bag for my drain at my hospital...

Loose tops/cardi's you can get on without too many contortions are good. Wet wipes are a boon too, worth having a pack in as you cannot get the armpit wet & whilst the drain is in are unable to have a bath or proper shower, so flannels at the ready! My left armpit is very numb.

Make sure you have plenty of pain killers in. I have alternated with co-codamol given to me by the hospital and ibuprofen. I kept mine next to my bed overnight so I wasn't reaching too far. I have also taken the pain killers reguarly even if not in pain to keep on top of it.

I have never had a general anaesthetic before and hadn't realised how tired it would make me. The first night I didn't sleep much, but since then my eyes have felt like they have been rolling back in my head from around tea time & I have been napping in the day time too!
I haven't had much appetite either, so having some quick easy things in the freezer would be useful.

Has anyone had a drain before? I have just squeezed mine to get the captured fluid into the bag and it looks (sorry about this if tmi) like how I would imagine a long tendon would look running down the tube. I'm fairly sure it is congealed something as fluid can get past it, it is all spiralling in the tube though & it looks pretty grim & like it could be something that should not have gone down the tube! I wonder if it is because it has been in a week now (I was told it would be 5 days, but they have said longer due to the amount of fluid draining still) so hence why it is doing this. I will check with the nurse when they are out 2mo, but just wondered if anyone has experienced similar at all?

KeepCalm I hope they are giving you lots of cuddles sorry you haven't heard yet. It's really unfair to drop a huge bombshell like that just before the weekend and then not give you any more information they often seem to have no idea how understandably terrifying all of this is for us patients!

Namechange it's always unsettling when the plan changes. I had various delays - up to six weeks - on my last regime and it still worked well so even if you end up having your "bonus" cycle in January, hopefully the delay won't make any difference to the effectiveness. It might even be better as your body will have had a chance to recover more, and you'll have got over whatever was making you poorly over the weekend

Mrstraveller will you have to stay in overnight if you're having all the nodes out too? It's not specific to your surgery, but my revolutionary discovery on my last hospital stay was an extra long phone charger because the sockets always seem to be really far away.

noodles ah, that's a bit better then. The first post-op shower/bath is amazing. You just feel so clean.

I haven't had a shower for nearly two months baths are much easier for my feeble little legs!

Cross-posted noodles I had stringy congealed manky stuff in my post-op drain too.

Thank you everyone for the reassurance and keeping me sane today.

My drain was pretty gross so I didn’t look at it that closely! I got used to it pretty quickly though and I didn’t have it in for long. I think I managed to hide it in a big coat pocket for a Waitrose drip as I recall.

Extra long phone chargers are a definite must.

Phew, that's a relief re manky stringy stuff Leslie & namechange
I didn't think it was anything to worry about, but it does look like it could be 'something' stringy rather than a general clot/congealed type stuff... Thanks

Sorry you haven't heard anything yet keepcalm can you hassle them for info 2mo?

Thanks to everyone for the info about what to prepare for regarding lymph node removal. I will read it all again in the cold light of day and make some notes in my note book. Glad to have been made aware of possibility of nothing to worry about “manky stuff” though

@noodles44 hope today is kinder to you 

@Namechangeforthiscancershit the chemo day unit phoned yesterday to confirm cancellation of all appointments. They told me the oncologist is still chasing the scan and that she's working between Christmas/New Year so she'll be chasing the results too.

I'm not sure there is much else I can do but wait it out.......

I'm trying to convince myself that if I haven't been called in Mon/Tues than maybe, just maybe it's not as urgent as she made it sound ?!?

DD3 is struggling with her hormones just now. She's only 10 and can't quite get her head round the mood changes etc. DD2 is being less than sympathetic so they keep clashing. Needless to say as DD3 lay (dramatically but genuinely) sobbing on me last night I just sat there thinking 'she's too young for this shit'

Keep Calm

The waiting is awful. Sometimes I wish they could be a bit more clear on timescales and when they do/do not communicate.

I had a lung scan in November. I’ve heard nothing since. I’m assuming this is good news as you think they would have called me in otherwise but I know I have to ask when I go in today although part of me would like to just ignore.

Sorry your DD is upset

Hi All,

Hope everyone is doing ok, or as ok as you can manage at the moment
I got my results on Monday. Lump removed with a clear margin and lymph node clear. I am so relieved, I had prepared myself for the consultant to say that I needed more surgery. The lump wasn't even as big as it appeared on the MRI, it was only 1.5cm. She said it was low grade and low risk of returning. I told the consultant that I was impressed with how my boob and scar look and that she'd done a good job! I still have a big blue patch but hopefully that will fade with time.

DH, DD and I had a nice day out yesterday to celebrate. When we got home there were more NHS letters, this time with DH's next set of hospital appointments. At least we get a rest from hospitals for Christmas! I'll be having my radiotherapy in late January, and they're also sending me for genetic testing, because my sister wanted to know if she has an increased risk. I've started taking tamoxifen, and woke up in the middle of the night thinking I was having a hot flush, but I'm sure it doesn't start to work that quickly!

Caz that's excellent news! Hopefully now you can relax and enjoy your Christmas. Fingers crossed for your genetic testing and for the Tamoxifen having minimal side effects

KeepCalm good to hear they'll keep in over Christmas, though hopefully you'll hear sooner! Sorry about the hormones and squabbling. It's a stressful enough time with cancer added to the mix.

Mrstraveller good luck today

noodles good luck with the nurse today. Hopefully she can provide proper reassurance about the stringy stuff!

Namechange I hope you're feeling alright today

I'm going for a pneumonia jab this morning. Then an old school friend is popping round this afternoon. I'm hoping to squeeze in a nap in between because I've been awake since half 3

Tx for the puppy pics keepcalm. I had to give my cocker pup to my DSIS last year .

Thanks Leslie, hope you have a nice afternoon and you get your nap

Morning,

Sorry you haven't heard anything yet keepcalm it sounds like your oncologist is actively chasing everything up, but it would be nice if you were kept more in the loop with the info.

mrsT another thought that occurred to me when getting up for after the op is getting a spray deodorant. You cannot wear any on the operated side immediately, but it makes putting deodorant on the other armpit much easier...

Thanks Leslie will definitely ask! It sounds like you have a busy day ahead. Nice to see a new (old) face late too.

Great news caz

How are you doing purple? I hope that your stents are behaving and the docs have ok'd them to stay.

I hope everyone has a good day and feels as well as possible

Chemo going ahead but took three attempts to get cannula in. My veins are saying “please no more” I think.

I really can’t believe this is my 7th chemo and in my own way I have just about muddled through. Support on here has been ace.

MrsT you haven’t just “muddled through” you’ve done amazingly! It is strange when you look back though isn’t and see how much you’ve managed to get through.

I am ok today- temperature lower so definitely on the mend. Have a really busy day with everyone wanting everything done before the Christmas break so no time to be ill, but am getting very light headed/wobbly legs. Well my legs are always wobbly but you know what I mean! Has anyone found this when their blood count has been down? I could do without fainting really given the choice.

It’s not low blood sugar as I MAY have had a McDonalds breakfast (nothing was in the house so seemed like the best option!)

Just a quick update - back in A&E as I've spent the entire night throwing up. I've never felt as ill in my entire life doctors think it's an infection but since I can't keep anything down I need IV antibiotics

I'll catch up when I get home, hopefully today if I stop being sick. and to everyone who needs them

Oh no purple I hope they can get you feeling better very quickly don't worry about catching up! Just rest.

Namechange sorry you're feeling wobbly. I get that when I'm anaemic. McDonald's breakfast sounds like just the thing

Mrstraveller good news that you're going ahead, but sorry about the cannula troubles. Well done on making it to your 7th cycle

Waving to TQ, noodles and Caz.

Also thinking of Pandora and hoping you're as OK as you can be.

I've had my jab. I walked rather using my wheelchair, but annoyingly I've just realised I forgot to put my step counter on this morning

Also, I had a shower this morning! it was nowhere near as difficult as I thought (I was terrified I'd just fall over) and much nicer and more convenient than a bath. So I'm feeling pretty pleased

Hi just found this thread. My younger sister (37) has been recently diagnosed with breast cancer, and it's also in her liver. She starts the first chemo this Friday. Just a few questions to anyone who could answer them?
How ill is she likely to be after Chemo, and is it usually immediately after or a few days? She's still hoping to come home for Xmas, but lives a 4hr drive away.
I'm 42, my aunt died of breast cancer in her 30's and my dad also died of bowel cancer when he was 38. Can I request an early mammogram? And if so how do I go about it?

She doesn't have children, but I have two boys who adore her. How and when should I tell them? Obviously she will start losing her hair and look different the next time they see her.
I will go back and have a good read of this thread, so I can see how people are coping with it. Thank you in advance for any replies, will check back later