CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Newcastle! I am so envious! I had 4 years of student life there .

Biopsy didn't happen unfortunately because I'm on blood thinning injections so radiographer wouldn't do it until tomorrow.

CT scan only takes 5 mins or so. No results yet. This is what is most frustrating. They don't want to tell you anything until they have all the jigsaw pieces. But basically:
It's a very large mass
My stomach wall has thickened and is affected
My lungs may well be too, given the amount of fluid there

So it's pretty shit all round.

eatyourveg do you have a tablet? You should be able to get a kindle app if so

TwitterQueen sorry about the biopsy and lack of results are you in hospital again tonight? Shit indeed. It'll feel a little easier once you know what's going on and they've told you what their treatment plan is

Anyone know if its possible to somehow read a kindle book without a kindle?
If you have an iPad or a Macbook , you can download the free Kindle app on your device. Android also has the app, but I have never used it.

Minty, your Ireland trip sounds lovely. Halfbaked, sorry to hear about tough times. I hope counselling helps your DD. I'm trying to sort something out for DS, but it's not easy. There's not much available, it's hard to access and it's basically left up to me to do it - the 'pros' have given me (out of date) leaflets and contacts, and none of them are really suitable. I am shocked and angry at the lack of support for children in this situation. I can't even access anything as simple as transport to school for DS - our catchment school is well over a mile away, with several busy roads, etc - no way could he walk by himself. I'm not sure what exactly I'm supposed to do if I'm totally unable to get him to school and I can't get a friend to take him. Sorry, that turned into a bit of a rant, but I do feel there's a total lack of support for single parents in this situation - emotionally and practically.

Welcome to new lacies, but sorry that you're here.

Four chemos down for me, eight to go. I'm utterly exhausted but the side effects haven't been too dreadful so far, and the cold cap seems to be working as my hair is hanging in for now. I did the 'Look Good' session today which I enjoyed much more than I thought I would. Definitely recommend it to anyone who can go.

Hope everyone is as well as can be . Sorry to see new names here
TwitterQueen sorry you're here . Your experience/symptoms sound just like mine . Hope you have results etc soon .

Hi Still, are you having treatment?

No . The whole a&e ,draining , scans and ultra sounds was 2 years ago this week . My treatment finished in January 2016.

Hi everyone!
I posted a while ago then everything changed after my scan and I'm only just getting myself sorted again.
Had a change of chemo drug as the Oxaliplatin wasn't working consistently - areas of shrinkage but areas of growth too. Didn't react well to the new drug and needed an injection of atropine which they call 'the bee sting' - not entirely accurate - it's like a hive of very angry bees! I have to have it every time now which adds some fun to the day's proceedings. Usually the most exciting part of chemo is getting my line and the power cord tangled up when I go to the loo!
Struggling hugely with the tastebuds. Any tips would be gratefully received. I was a proper piglet before but food is becoming a right nuisance and no pleasure which upsets me! I've lost too much weight so I'm trying my best to find things I can tolerate.

Hope everyone is comfortable and doing ok.

LaaDeDa sorry the oxaliplatin wasn't working. What are you on now? My sympathies with the atropine. It's like being stabbed in the arm I have to have it every time too. I've never had a reaction, but I think they just give it preventatively at my hospital.

I find strong flavours are best, especially anything vinegary. Also spicy things. I hope you find something that works for you!

Stila happy cancerversary

TwitterQueen how are you getting on?

Flippy third of the way there! I'm glad it's not too awful so far and your hair is hanging on. LGFB is fab. Did you get some good freebies? I'm sorry you're struggling to get support for your son

I am finally home today! Bought cashews, Roquefort and lovely bread. It was delicious!.

Ovarian cancer confirmed and its not early stage. All family want to come and see me but I have put them all off. I want to be normal for a few days. Clinical team meeting is on Monday so I won't get a treatment plan until early / mid next week.

I don't want everyone sitting round dissecting my symptoms in front of the DDs either. I feel I need a break for a few days before gearing up for a long hard road ahead.

Hi all

Hope you don't mind me popping in! I've been lurking for the last while and have found a lot of info very reassuring.
I'm currently waiting results of a biopsy for cervical cancer so hope you don't mind me waiting around here in the meantime. Nurse doing biopsy didn't seem at all concerned which should reassure me in one way, but in another way I feel like she wasn't taking me seriously if you know what I mean? I've had worsening symptoms for a long time now and I feel like we've ruled out everything else at this point. So it's just time to wait and see I guess!

Hope you're all as well as can be! There's such a lovely, supportive vibe in this thread you should all be very proud of yourselves for being so giving when you're all going through hard times

twitter so sorry to hear the news. That must have come as a bit of a shock (I've seen your other thread- everything has happened so quickly). Good idea to try and be 'normal' for a few days

laadeda I had different chemo to you but would agree with leslie that spicy food and strong flavours worked best

flippy I don't know what to suggest for support for your DS. I've never been offered anything for DD, they do seem to get overlooked when it comes to support.

I had a lovely weekend away although it was quite sobering. My friend has a 6.5 year old DD with autism and recently diagnosed with type 1 diabetes. I thought I had a lot to deal with my DD but I get off easy in comparison.

But, I discovered yesterday the hidden impact that cancer has on our children . DD (10 in a couple of weeks time) came up to me in floods of tears absolutely distraught because she had found a 'lump' behind a nipple. I suspect it's the start of a breast bud but of course for her a lump can only mean one thing . It's left me feeling so sad for her, what else has she been worrying about?

Sorry almay we crossed posts. You're at the worst stage having tests and waiting for results. I hope the nurse wasn't just being overconfident and that things aren't as bad as you fear. When should you get the results?

mintyneb I hope so too! Very much at the hoping for the best but prepared for the worst stage.

She said usually results take four weeks but I told her (in the politest way possible) that I wasn't waiting that long so she said she'd mark them as urgent and they should be back in two weeks. I'm just frustrated because I had to wait 6 weeks for the colposcopy as they're short staffed at the moment, and I've been to the gp and paid for a private ultrasound in the meantime so I know we've ruled out all the obvious things. I just want answers!

Great to vent on here thank you ❤️

4 weeks sounds too long to wait! For both my diagnoses (breast cancer) I knew for definite within 10 days and that was bad enough. Vent away, this is a great place to let it all out

Yeah I'm in Ireland and it seems things are a little bit slower here! I'm also pretty young so not generally in the "risk" category so overall I don't think they think it's much of a concern. My gp however thinks differently so at least there's that!

Hope you're doing ok! Just re-reading your earlier post, I can only imagine how upset you were. Kids can find it difficult to process things they don't really understand and tend to take things quite literally at times. I'd say just reassure her as best you can that she can talk to you about whatever she's feeling/thinking. It's so hard to try and manage everyone else's feelings on top of your own

TwitterQueen1 so sorry to read your update - I'm not entirely sure I understand what stages and grades all mean and if there is a difference but hope Monday's appt will mean your treatment plan gets up and running very soon.

My first appt with the gynae oncologist is tomorrow - not really sure what to expect as I've had the scans and had the bloods just need someone official to interpret them and tell me what to do. GP has already told me that it looks like its early stage but I'm not sure what that means as I now have pain which I didn't have a few weeks ago.
Can't find babysitter for ds2 tomorrow his PA is unavailable and his supply PA works with another young man on a Friday so dh might have to stay at home.

TheFirie - no laptop, tablet or anything other than a desktop - not very techy I'm afraid, don't even know how to use my phone other than to phone text and access emails. I'm going to ask a friend if she can do it and email it to me. Found something on the Macmillan site which was a useful read but would prefer a hard copy of a basic guide - will ask tomorrow

eat funnily enough (ha ha) a good friend had early stage last year. For her, it meant the lump was confined within the ovary and cancer had not spread outside it. Hysterectomy followed, with surgeons v careful not to disturb lump.

She was then offered optional 6 month chemo, which she took, as extra precaution. All well now ..

I hope the same for you.

Good morning all

TwitterQueen I'm sorry your diagnosis has been confirmed. I hope you get an excellent treatment plan very soon. And good that you're out of hospital :) a few days of normality sounds just what you need

almay welcome but sorry you've had to join us. I hope you get good news

minty your poor DD. I hope she's feeling a bit better today

eat you can get Kindle for PC. There's instructions here.

Good luck with the gynaecologist. I'm sure they will go through everything with you and you can ask as many questions as you need to. Take a notebook, especially if DH cannot join you. And don't be afraid to ask them to repeat themselves or wait for you to write things down. You might find it helpful to write down any questions you have beforehand too. I find my mind goes blank when I get into the appointment!

Cancer is staged I to IV with I being the least advanced up to stage IV where the cancer has spread elsewhere in the body. Grades (1-3) are how different the cancer cells are to normal cells, with 3 being most different and fastest growing.

I'm having chemo today. My portacath is misbehaving so they haven't been able to start any of my medications yet.

I am feeling good though, as my latest CT scan showed the tumours are stable so the chemo is working I should be having my bowel surgery in a few weeks so today will be my last session before that

I hope everyone has as good a day as possible

If you like information then there are pages on the Cancer Research U.K. website about staging and grading. Or there's a more basic summary from Macmillan.

Eat when I saw the gynaecological oncologist there was a Mcmillan nurse with him , and they had loads of booklets to hand .

minty your poor dd

Thanks Leslie

It took me so long to reply . . . I had soup on the go and i went off to deal with that ! I crossed with your post .
Good luck with the chemo today , great news that its doing its job .

Hi everyone
I hope you don't mind me coming back here after 6 months. I'm sorry to see new names here - wishing all the very best for you as well as the fabulous long timers.

Quick reminder : DH has been diagnosed with advanced incurable Prostate cancer which has spread to lymph nodes and bones. When I was here last time I had a breast lump in the same place as a lump two years ago which had been biopsied (vacuum) and all ok. The lump has returned and looked indeterminate on mammogram. Breast clinic wanted to see mammograms from two years ago to make sure looked the same (so that biopsy result would still be valid.) that's what happened and they contacted me to say happy that no further action needed.

I was left a bit uneasy as the vacuum biopsy had taken away quite a bit of lump so couldn't really understand how could be exactly the same but anyway tried to forget about it.

Fast forward six months and the lump is more prominent. It still moves slightly if pushed but feels harder than a cyst. I have a gp appointment in two weeks - is it reasonable to mention again ? I don't want them to think I'm wasting their time.
(Just for context I'm definitely more anxious than usual because of DH diagnosis but also my DM was diagnosed with BC at exactly the same age as me. The lump is definitely there but I could be making more of it than it really is - I realise that many people would have just accepted them saying it's ok.)

Thank you !

Excellent news Leslie that your chemo is working. I know it has been a long haul for you, with lots of hospital admissions, so it's really good to know that it has been controlling your cancer.

Twitter I saw your other thread. I'm so sorry that this is happening to you. This in-between bit before you get a plan is the worst. Hopefully once your team explain fully where the cancer is and what they want to do next you will feel less bewildered.

Dahliaaa I think you should mention your concerns to your GP. That is what they are there for, and it is just going to keep going around in your head.

I had my final oncology appointment today. I have almost finished Herceptin and my hospital do not offer routine follow up. Instead they do open access where you can call a BCN if you get worrying symptoms and they will book you in. I think it's probably a good system because appointments are not clogged up with healthy people having annual reviews. Hopefully I will not be back. I've seen lots of people on this thread move on after their treatment. Always a bit of a wobble but I can't keeping looking behind me for the rest of my life.

Waves to all you lovely Lacies

Mysillydog hooray! How many more Herceptin are you having? I hope you're not having too many side effects. That sounds like a sensible system. Will you have annual mammograms or blood tests or anything? It seems to vary so much between different hospitals! I can understand the wobble. Lots of people struggle a bit with being cut loose at the end of treatment after being so closely supervised during treatment. Here's hoping this will all soon be a distant memory

dahliaaa definitely mention it again. There's no point worrying about it all by yourself. I hope they can reassure you :)