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 that's lovely of you I wish I lived closer to people so I could help out in some way but I think I'm the only one who lives in the North East

Thank you all for the advise yesterday, my MRI went ahead. We think the reaction was either caused by the contrast from the CT or the micropore.

My family think i'm odd as i actually found the scan relaxing, think it was all those years of playing dead dogs at children's parties

Hope the day is treating everyone well

fluffy I also find scans relaxing. Like being swaddled!

Just checking in and saying hi. Starting to really feel the effects from Fridays chemo. I have my next PET scan at the start of January. Finally understand this whole scanxiety thing.

Sending lots of unmumsnetty hugs to those who need them. Xxxx

5 days post lumpectomy and sentinel node removal, and still feeling a bit battered! I had the dressing changed today, and it looks ok. The cut is much longer than I thought it would be but my boob doesn't look much different so that's good. Just hoping that they have got the lump out with a clear margin so they don't have to open it up again. The Breast care nurse said it's about a third of cases where they have to go back in. Not liking having a numb armpit but hopefully the feeling will come back over time.

My parents are helping out a lot with my daughter and offering to do housework. We went to theirs for lunch at the weekend and I ate and then slept for the whole afternoon!

Hi,

Thanks for the well wishes. I am at home again now. Feeling quite sore, woke up feeling sick and weepy, but that seems a bit better now. Off to bed soon as totally wiped out, just letting you know I am out!

Xx

Caz. Glad you are recovering despite still feeling a bit battered and Noodles glad to hear it’s done and you are back home. Hope your parents make it to yours soon to look after you

Xx

Results are back from addenbrooks- ive got early stage heart failure. So more drugs.

My blood transfusion helped a little bit, I'm not quite so pale and breathless now but still utterly exhausted.

Got a lovely purple area from where I developed cellulitis last week. So got more antibiotics and appointments. Honestly I need a week off where there's no appointments or treatments. I just wanna be left alone for a while. I'm sick of seeing people.

And still no date for surgery.

Oh and now no eyebrows.

Noodles be kind to yourself for the next few days and keep up the pain relief - take some to bed so you can take them in the morning before you get up! I had moved on to paracetamol after about 3 days but it's not worth battling the discomfort. I found the armpit pain post lumpectomy worse than post mastectomy as the nodes are taken from a separate incision. However the main scar healed quicker... swings and roundabouts!

I am bricking it ahead of my first chemo tomorrow but equally will be glad to get the first one out of the way. Didn't help that during my 'pre chemo chat' yesterday the nurse spent 60 minutes telling me all of the things that could go wrong 😩

Golly pandora I know what you mean about appts and treatment and I've not been through half of your troubles. Hope you have a restful night xxx

Very busy on here today!

Pandora I hope things will calm down a bit for you now. Fingers crossed for the heart medication getting to work quickly.

noodles rest up. Sick and weepy is a common reaction to GA. I hope you sleep well

KBG good luck for tomorrow

Caz I'm glad your parents are helping out. I hope you heal up quickly and fingers crossed for the margins. When will you find out?

Tahiti I hope your side effects start to ease up soon.

Fluffy good that it went ahead. Do you know when you'll get the results? I often nearly fall asleep during scans.

Namechange tricky one - you're probably going to worry either way. But I don't think they like to give out results over the phone even if it's good news.

KeepCalm you obviously needed a good sleep! I hope you feel better soon.

Welcome Waddsup12, but sorry you're here. Feel free to post whenever hopefully you can distract yourself lots over Christmas.

purple any further update on your kidney situation? I hope they get it sorted for you quickly

Hugs to everyone who needs them.

I did my first GCSF injection this morning. So far I haven't noticed any side effects so fingers crossed. Seeing the oncologist tomorrow.

I hope everyone has had a reasonable day sorry, I've gone a bit wild with the smileys today...

Glad it went well Noodles. It's all over for now so be nice to yourself for getting through it

I'm pleased you finally got a blood transfusion Pandora. I stupidly put a peel off face mask on today and it pulled the few remaining eyebrows I had left out

Knicker try not to worry, the list of possible side effects is huge but the chances are you'll hardly get any of them but they need to tell you about them just incase

Good luck for tomorrow Leslie, hopefully they'll get you started on your chemo tablets again ASAP.

I had another blood test this morning and my kidney function is even worse so I'm at the hospital at 9:00 in the morning to either replace my stents or if they aren't working at all I'll need nephrostomy tubes. I'm hoping they take pity on me and give me a general anaesthetic. I'm such a wimp when it comes to pain

I'm 33 years old with one child over 5. I've been bleeding for 6 weeks now, it's like the second day of your period and it's a constant flow. I've had blood tests and the CA125 blood test which came back within normal range but I'm aware that its not the most reliable source and many people don't have raised levels who do have cancer. I've had an ultrasound and an internal ultrasound which picked up a cyst on my right ovary that's just over 5cm by 4cm by 5cm roughly the cyst was once very small and I was told it would disappear on its own however it hasn't. At the scan they had great difficulty in finding my left ovary and after around 5 minutes of searching they found it hiding. I have pain and discomfort during and after sex (we often have to stop because of the pain is too much). I get full easily and feel constantly bloated, I have a consistent dull ache in the ovary area with sharp pains often, I feel sick, have nausea, dizzy, the tiredness is off an other level and im finding normal day to day tasks exhausting and draining, I have

awful lower back pain for as long as I can remember, the tops of my legs ache and hurt. I was diagnosed with IBS around 4 months ago and I avoided certain foods to find out my trigger however I was still having bowel issues despite not eating or drink the things which trigger me.

At my last doctors appointment (last Wednesday) she has put me through for an urgent referral to the hospital to be seen within 2 weeks otherwise I would be waiting until March Plain the possibility of cancer was mentioned. I'm not sure what the point of my post is but I know there will be others who understand and would have gone through the same thing.

Thanks for the good wishes & welcome. Appreciated as I just don't really know what to think, just sorting out my Christmas things, meanwhile...

Trying to dodge anything too demanding.

Much love to all posting their news.

Good luck tomorrow purple

My next cycle is due to start Christmas Eve, so I'm not sure whether they'll suggest delaying

Chickenwings welcome, but sorry you're here. It's good you're being seen quickly

Waddsup most referrals turn out to be something harmless, but of course that doesn't stop you worrying

Yep, I had a referral 15 years ago & than I was a bit frantic. I like to be informed/forewarned & have found the thread helpful.

Glad you came over to this thread Chicken. I don't have any advice about ovarian but our lovely TQ will hopefully be along today with some advice or answers to questions you have. Stick around as this thread has been an amazing support to everyone here but fingers crossed you don't need to be in it for long

Did you have many side effects from taking the tablets last time Leslie? I wonder if you could start them Boxing Day instead of waiting another week. Although my oncologist insists mine is always on a Monday too for some reason

I've been googling nephrostomy tubes and they sound awful. I won't be able to have a bath ever again and I have to be careful with showers as I can't get them wet I'm praying they can just give me new stents but the doctor didn't sound very hopeful on the phone as the cancer is pressing on my tubes Ugh I'll find out soon either way I guess

Purple good luck today. Really hope they get you some pain relief - I am crossing my fingers for you x

Wow I’ve missed a lot! Come down with a bit of a cold/sore throat etc so am enjoying a bit of hot Ribena.

KBG big day today. Thinking of you. The side effects list is important obviously but most of them are so so rare.

Thanks Knicker. Good luck to you too! Not that you'll need it. Have you got somebody to sit with you? I spend quite a lot of time sleeping at chemo as the stuff they put through the cannula makes me sleepy so I end up a dribbling snoring mess

I have just lost a large post I wrote as I was about to post, so will be brief this time...

purple good luck today, will be thinking of you. I hope the stents are possible. Also, thank you so much for sending that pillow. It has been crammed under my arm since getting home and all night. It makes the whole area much more comfortable.

Leslie good luck today with the oncologist. I hope they let you do the chemo when you are happiest to do so. If you do it on Christmas Eve would you be likely to be side effect free on Christmas Day & Boxing Day? Also, I now have a teeny understanding of how the nasal oxygen prod things feel now as had some put on me when in the recovery area yesterday. I pulled them out as so irritating, I thought of you and how much you have had to deal with lately

KBG good luck today. They have to tell you all the potential side effects so you are aware (I remember feeling quite flat after leaving that meeting about the treatment ahead) hopefully you will have minimal side effects. They will give you meds to counter any too. Make sure you drink lots and have a decent thermometer at home too for if you feel peculiar.

namechange can you ring the consultant and say in advance that you don't want any news regarding these scans until you see the next lot in the new year so you know what the implications mean treatment wise? I too don't think they give you news over the phone whether good or bad.

Pandora sorry to hear your news, hopefully the heart meds will get to work quickly. Glad to hear the blood transfusion has made you less breathless.

TQ enjoy the trip to Yorkshire, only a couple of days to go now for the trial (although I am sure they feel an eternity) best wishes for Friday

I seem to have managed hardly any sleep overnight (just wasn't tired in the end, possibly the after effects of having a general) I have kept on top of pain killers so feeling ok (the anaesthetist advised to start taking them when I got through the door last night) I followed his advice and feel quite perky! I do realise now why they don't let you sign legal documents within 24hrs of a general too.... I managed to weep on my surgeon and possibly may have told him he was a wonderful man and how glad I was it was him who had operated as had not been anxious and thanked him profusely. All correct but possibly an emotional delivery! I also cried on the anaethetist when he came to check on me. I don't even remember counting or anything and only realised I had had the op as my throat was a bit sore! He gave me a squeeze and was lovely which set me off again!

I hope everyone has as good a day as possible x

Hello Chicken I've posted this on the other thread too..

The honest answer is that no-one can tell you whether or not you have cancer. It doesn't sound like ovarian cancer to me at all, given your age (young), no CA125 marker and the fact that you have pain. OC is known as the 'silent killer' because very often there are few symptoms and also no pain but I am only an expert on my OC and I cannot diagnose you.

There is obviously something wrong but if you're on a two-week referral then you won't have to wait long to find out. I know it's very tough and the not-knowing is awful but whatever it is (and the odds are that it isn't a cancer) you are in very good hands.

Round 1 done and dusted, not looking forward to the daily injections for the next 5 days but it's all in and doubtless doing it's thing! Just had a much needed afternoon snooze (the low level anticipatory anxiety seems to floor me) and DD2 has just brought me a nice cup of organic green tea. Busy rereading the 'take Breast Cancer off your menu' in a more determined bid to improve my dietary intake!
Hope you lacies busy recovering are doing ok and purple I hope your day wasn't too awful. I really understand your downer on no more baths

Purple how are you? Hope the stents get another lease of life and you don't need the tubes.

Leslie and anyone else. My DDs have produced a list of about 20 naff must-watch Christmas films - happy to provide it here if anyone is interested? They're all on Netflix - including the latest Kurt Russell Christmas Chronicles one.

Noodles crying is a very common side-effect. But I bloody well wish someone had told me that BEFORE my GA last year because I spent a week thinking I was a complete wuss...

Back from Leeds. Went to a pub quiz last night that didn't start until about 9.15pm! Had to leave early because I got to the stage where I just wanted to cry... and that's when I know I've overdone things.

purple how did you get on today? That really sucks about the baths

Namechange I hope the hot Ribena has worked its magic

KBG well done is it Filgrastim injections? I'm doing them too, but I'm on alternate days for ten days. Anyway, I did my first one yesterday and it really wasn't that bad so hopefully you'll be OK with them. I had a blood test about six hours after the injection yesterday and my neutrophils had already gone crazy (oncologist was very pleased).

TQ how was your trip?

noodles I hope you've had a restful day you might suddenly be hit by the exhaustion in the next few days so try not to overdo it. After one of my procedures I woke up and clasped the hands of the anaesthetic assistant man to my bosom and tearfully thanked him for keeping me alive! hopefully they're used to that sort of thing...

All was fine with the oncologist when I finally got to see him! Loooong delays today so I was glad I had my knitting. I didn't see my consultant, just the registrar and he gets ridiculously flustered and takes forever to do anything. He insists on dictating his letters during the appointment. Normally I don't mind, but it's made my poor mum late for work so I feel a bit guilty about that.

I'll start my next cycle on 27th so that I can have Christmas side-effect free

I fee so much better for getting out of the house! I went in my wheelchair, but I didn't use my oxygen at all. I was feeling so great that my dad has just taken me for a little outing in my wheelchair. And now we have takeaway on its way

Cross-posted TQ yes please to the list I expect I can already tick off quite a few!