Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Everyone here will hold your hand while you wait for your results, Lola, don't worry.

BitOfFun nice to hear from you again; quite understand why you might want to keep away from here though. Before I was diagnosed, I never noticed how bloody irritating most of the cancer charity ads are.
Losinglola you are very welcome here, plenty of sympathetic and friendly company available while you wait for tests. It's a scary time.

Lola. I really hope that it turns out to be nothing for you but while you wait for your results it is definitely not nothing and you are very welcome here even if we all hope that you will not need to be here long. Waiting for resiults and fearing what they will reveal is one of the most difficult times.

Losing Lola this whole cancer thing is scary, hang out here while you get through the testing stage, you will get lots of support.

Yay nelly just the news I was hoping for. It's too early for wine in The Patience but not here in Sydney so I will raise a toast with the nice glass of Sav Blanc I have in front of me (but probably shouldn't!)

BitOfFun lovely to hear from you. I have even thinking of you and meant to message but I'm a bit crap, sorry. Partly because, like you, sometimes you just want to forget the cancer stuff. I have come off every other site I was on, including the Inflammatory BC one. That board was so quiet and then the last two posts I read were death announcements so I just couldn't hack it. I have been declared "cancer free" which sounds great but the IBC stats are still a shocker so I think one day at a time is probably going to be the rest of my life too x

Waves to everyone else.

Morning all.
@Doublethecuddles not a fraud at all you've had cancer! When you see the surgeon in November are you expecting any further treatment? I use a combination of phone, tablet and laptop for MN. I can't get on with the App so use the browser. I have only recently discovered that if you type @ followed by the first letter of someone on the thread it helpfully gives you a list of all on the thread. When you click on the name it bolds it. Doesn't always work but is easy if it does.
@Trumpton those little cushions are lovely, I was given one at the hospital, a local group makes and donates them. Though I found in the car that I wanted a huge pillow between my chest and the seatbelt. You will soon be the breast surgery expert .
@WTF99 glad to hear the sores are mending. New swish unit sounds great. The unit where I have chemo is dire. Ancient and cramped and shabby. Environment does make the process pleasanter but of course is not as important as the medical stuff.

@iVampire that test sounds very interesting. I'd love to know how some of these things work.

@nellysephalent brilliant news, waving you off to forget the whole experience.

@catnidge I thought learning to knit would be a cinch. I've got the hang of casting on and off and K and P. I ordered some chunky multi coloured wool from Amazon as there is nowhere I can get to round here to buy such things. However it seems that knitting a hat is just not so simple. The needles I have are wrong or I need some round needles . I probably need a pattern but I was never one for following recipes.

@BitOfFun Hi there. I've realised that cancer campaigns are not something I want to hear about. And making cancer friends inevitably leads to losing people. It's a fine line and I don't blame you for wanting to avoid.
@Losinglola welcome tothe Patience Inn and I hope you won't be here long.

I have had 4 hospital appointments so far this week plus a telephone GP appointment and now today an abdominal scan of ovaries. I think my GP is just being over cautious because of the BC and I refuse to worry about it. Need a full bladder though and I'm very sneezy

@skap Many thanks! They will do a peer-review final check later next week looking at the scans etc so crossing fingers till then.

Had CT scan appt through this morning . It’s next Thursday when I am in England but quite a distance from Manchester and doing a flying visit to see a precious friend .
So I rang to leave a message and a fabulous lady who had popped in to do paperwork answered , found my case file and changed the scan to the same day as my consultant appt on the 30th .
Now that’s service ! I feel quite wobbly at how lovely people are !

Ahh, that is so good to hear, Trumpton!

I'm glad that you get what I mean, Skap- I feel a little sheepish for not posting, but the understanding on this thread is so reassuring.

And BloodyBridget- my iPad takes so long to load pages, I am missing loads of posts, sorry!

Hi everyone. Just checking in! Been a bit up and down since my first chemo. Next one is next week, but at least this time I will know what to expect. I'm looking pretty weird now with my rockhopper penguin hair, still , the children are finding it hilarious and are trying to persuade me to go as Professor Quirrel this Hallowe'en.
@yoshimi I consider the purchase of cosy dressing gowns a VITAL part of ones self care. My dd has an operation coming up, I got her a new one for her hospital stay. I'm not a big shopper but I think a nice dressing gown makes all the difference when you are feeling crud. Enjoy yours!

@skap there's a book by Elizabeth Zimmerman, where she talks about her method of knitting which she calls 'unventing' but free style knitting is actually so hard? I'm not one for following recipes either but if you submit to the discipline of the pattern it will improve your outcome..... Its a lot like coding. You need to learn it first, them you can make your own patterns up endlessly.

Bitoffun I think many people don't realise each cancer has mulitiple subsets and types. I know I didn't until I had cancer.
On a school trip we were in marks and they had a band playing raising funds for Mcmillian which is of course a fantastic thing to do. However I felt a bit overhwlemed and panicky about the children asking me about it incase I burst into tears!

losinglola welcome, do you know what the next steps are for you? Sorry about your mum, I understand how scared you must feel, waiting is never nice.

skap I abandoned the knitting yesterday in favour of Xmas gift wrapping. I know it's early but have done some online shopping in my 'resting' time

Hope the ovarian scan went well skap and you managed to hold it all in without a sneeze or cough!
I've realised I've been discharged from hospital with no advice re post op exerciss or rediscovering my pelvic floor. Will have a Google and see what I should be doing.

Trumpton, it's lovely when things come together and make you day.

Emperor I'm sure you make a grand Professor Quirrell, turban chic!
The Patience Inn is serving Sunday brunches and I think a spa service for us all today.

Have a lazy Sunday.

Hello, I am new.

I’m 42 and I was diagnosed with grade 3 inflammatory breast cancer last week which has spread to some of the lymph nodes under my arm. It’s ER- but HER2+. Due to see the chemo consultant tomorrow with a view to starting chemo etc later this coming week.

If anyone could give me or point me to practical tips for preparing for chemo I’d be very grateful. Still very much in shock as has all happened so fast! Haven’t even told all my friends yet.

Hi Piggles

Sorry to hear about your diagnosis. You will find lots of support here. My chemo finished in December so I’ve forgotten a lot. I did find there were a few of us going through it at the same time on here so we tended to post with things we found helpful as we went along. I think it might be the Macmillan board that has a group for each month starting chemo so you are with a group all going through it at the same time. One of the things I found helpful, which I didn’t get organised until about half way through, is to choose a GP you like and ask them if they can be your main point of contact at the surgery through your treatment. I found this really helpful in getting past receptionists when I just wanted a chat with the GP about x or y side effect. Often you know what the issue is you just need a phone call to get the prescription, so I could say Dr x has told me she will take a call from me as necessary through my chemo.

Piggles39 hello and welcome to the thread. I'm sorry you have had this diagnosis and you are possibly at the most difficult stage now. Getting your head round the enormity of it all takes time. There are several on here with breast cancer and hopefully we can all offer tips. As you may have already realised there is such thing as just breast cancer, lots of variations which require different treatments and no two people seem to follow the same pattern. My own is grade 3 invasive ductal BC ER- HER2+ so we have some things in common.
I had my surgery first and started chemotherapy two weeks ago. I'm having 12 weekly doses plus Herceptin. Those who have the chemo first (neo-adjuvant) generally seem to have 3 weekly chemo. If you are HER2 positive you will get Herceptin for a year.
Your oncologist will spend plenty of time going through your treatment plan and you will also meet an oncology nurse who will talk to you, again in depth, about side effects and looking after yourself.
Have you someone to go with you to these appointments? It's really useful to have notes of questions and someone else to remember everything.
Can I recommend this website as there are lots of lists and practical tips on there. Click on the chemo tab at the top.
You will have some decisions to make such as whether to try cold capping. It's meant to reduce hair loss. Some do it some don't. You might want to have your hair cut before you start or just take it as it comes.
All this sounds horrific when you are reeling from the diagnosis but you will calm down and you will get better.

@catnidge your pelvic floor will be very different I imagine. Perhaps a physio referral might be useful? At my GP you can self book to a physio without going through a doctor. You mentioned the C word. I'm putting my head in the sand on that one. I usually do all my shopping online so that should be ok but the prospect of visiting or entertaining when I am at week 12 of chemo fills me with horror. (If by some lucky chance it all goes to plan my last dose is on Christmas Eve ).

The scan was fine. The lovely sonographer knew my history and talked me through the whole thing. He said he could find nothing requiring urgent attention. He couldn't actually find my ovaries which he said was common in post menopausal women. If there had been a problem with them they would have been enlarged and visible.

@EmperorBallpitine I like the idea of an indulgent dressing gown. I think I will get some lovely PJs as well for the down days. My hair is still intact, it's 13 days since my first treatment so I expect it to go any day soon.

Piggles. Forgot to say my cancer was HER2 positive also and I had 7 rounds of chemo before surgery. As Skap says the oncologist will probably talk you through the main things you need to know but you should also have a breast care nurse to go to as you need to with other questions. I always wrote down my questions before each appointment. Please ask away on here.

Thank you both for replying so quickly.

My DP is able to come to the appointments with me. At the first results meeting on Monday he had brought a notebook but we were too upset to write! I think it’ll be easier next time now the initial shock has worn off and there’s a treatment plan coming together.

My parents live a few hours away so I flew up to see them yesterday and talk them through the diagnosis. They want to come down and stay but I think I’ll see how at least the first treatment goes first.

Mum’s quilt group are going to make me one of the underarm cushions when I get to surgery in a few months’ time. I could have done with one after the biopsies and marker insertions, which were a lot more painful afterwards than I was expecting!

Welcome @Piggles39

I was diagnosed in July with DCIS and had a wire lead excision in mid-August . A second excision and sentinel lymph nodes op in September showed still no clear margins but clear lymph nodes.
I am waiting for mastectomy and reconstruction next month .
I am also ER- but HER+ with invasive elements .
Chemo and Herceptin to follow after mastectomy .
My pathway is remarkable similar to Skap and you will find we are all
friendly and there is generally somebody awake in those wee small hours to hold your hand .
Best wishes to you .

Firstly hello and welcome to Piggles, very sorry about your diagnosis, this is a horrible, scary time. I hope the consultant is of the lovely type, tomorrow.
Trumpton that's great your CT scan has been moved to coincide with the consultant appointment.
Skap gosh that's a busy week for you - and I think you said you have to go to three different hospitals? Good indications from the scan though, do you know when you will get actual results?
I'm still feeling shattered, throat is sore blah blah, so boring. We went to a small party last night, several people there I know well, but I felt quite incapable of making conversation and kind of wished I hadn't gone; I just wanted to lie down and let the talk wash over me. WTF you said you were feeling quite a bit better the other day, hope that is still the case. How's the eating going?
Waving at everyone else! I might see what the Sunday roast looks like at the Patience, I bet they do a lovely Yorkie.

Hi Piggles. I was diagnosed with Stage 3 Inflammatory Breast Cancer in March this year but unlike you I was ER+, HER2-. It is a scary diagnosis as IBC is so rare but I just wanted to say that I finished active treatment a few weeks ago (although I will be on hormone treatment for five years) and have been told I can now consider myself cancer free.

There is an internationally recognised protocol for IBC and treatment tends to be more aggressive than for other breast cancers. The sequence is always Chemo first then surgery then Rads. My Chemo was eight fortnightly sessions. You will probably be asked if you want to try using a "cold cap" to try and minimise hair loss, talk to your treatment team as there are pros and cons. Because you are HER2+ you will also be given Herceptin but I'm afraid I can't help you with that. Surgery is usually 4-6 weeks after Chemo finishes, they basically don't hang around once Chemo is done. Lumpectomy is rarely an option with Inflammatory and immediate breast reconstruction is not offered due to the Radiation you will need afterwards. I chose to have a double mastectomy even though the cancer was only in one. breast and the lymph nodes of one armpit and my surgeon was fine with that. You might want to talk to your surgeon about your options.

Any other questions fire away but it is bedtime for me now (I'm in Sydney) so I won't be back until my morning.

Night night to everyone else 😊

Hi, hope you don't mind me popping onto this thread. I'm looking for some info and cannot find any anywhere. You all seem like such a lovely strong Supportive bunch and don't want to disrupt that.

I have several kidney tumours, that although benign, are getting treat the same way as if they were cancerous. I've had three embolisation so far and I'm starting everolimus next month, is anyone else on that and have you had any nasty effects from it?