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

Thanks for that meercat . Fingers crossed that I miss out on skin issues as I'm having just 15 sessions. I have the aloe vera gel at the ready though! How's your hair doing now? Has it stopped shedding? Now that I've had it cut to one length all over and look a little less 'mad scientist' (thanks for that comparison dd!) I leave my head uncovered when im in the house on my own, but i still cant believe it's me when I catch sight of myself....it's so short! I mean too short to really be an intentional style, if you know what I mean. I'm gonna have a colour put on in a few weeks....hoping there'll be a bit more to colour by then! Brassica how's your hair doing?
Meercat I know what you mean about lack of reserves...I do feel both emotionally and physically vulnerable at the moment....will take a while to build those things back up I think. I hope youre giving yourself some tlc.

Wondering how piggles and zorgoth are getting on. Zorgoth are you starting chemo tomorrow? Hoping it goes ok for you.

Time for me to get some sleep I think. My son has not long left so I'm still buzzing from talking to him.
Night everyone.....or have a good day snows!

Hi everyone, just a quick check in to see how everyone is doing. I'm seeing the oncologist this afternoon at 3pm to see which chemo protocol I'll be on, then will be starting on Friday. Wish my appointment was earlier- 3pm gives me a long time to work myself up into a state!

Zorgo. Hope the appointment goes well today and that you get all of the info you need. Starting the chemo on Friday is good as not too long to wait. I have come to the conclusion that the endless waiting for the next thing, be it answers, results or treatment, is one of the hardest things to cope with.

WTF Snap on the hair colouring! I am having my highlights done tomorrow for the first time since March. I will be so glad to look a bit more like myself. The shedding does seem to have settled and my hairdresser tells me that, while she can tell that it has thinned a bit, it is nothing drastic and it doesn't show. (Everyone else has been telling me that it doesn't show too but they might just be being nice!). I know my hairdresser wouldn't agree to do the colouring if she thought my hair hadn't recovered and she has been colouring my hair for about the last 20 years so she knows it better than I do probably.

If yours has started to grow it shouldn't take too long before it settles into a style. The whole hair thing is so important, so much a part of how we make ourselves look the way we want to that when control of that is out of our hands it is hard to cope with.

Morning All

Hope everyone is coping ok with treatments, appointments and the endless waiting.

Got my results yesterday and the lymph node they took out was clear so now just waiting for a date for mastectomy which will also be a DIEP reconstruction and a reduction on the other side at the same time.

Relieved about the results but want the mastectomy to be over so I know whatever might still be lurking in there is gone.

Been told about this thread from another part of the f orum I have been diagnosed with ovarian cancer stage 111C. had 6 lots of chemo with expectation of surgery. However just been told that surgery not an option, which has somewhat floored me. Waiting to see if I am going to be offered anything else, consultant initially said it had responded well to chemo, but it obviously hasnt done its job. Im in the depths of despair, I have no family at all , have attended virtually all my appointments and treatment alone, its been so hard and now to cope with this news. I have two dogs that I am really worried about now as they would not do well in rescue, so I will have to make the decision to have them put to sleep. I really feel its not worth going on. I dont know how to get through the rest of the time I have whatever it may be

elspeth18 I'm so sorry you've had such bad news.
This thread is a haven of care and advice, we have some posters with ovarian cancer who are in treatment and will know more than me. Was it the oncologist who told you surgery wasn't an option? It seems tough to tell you half the plan? When is your next appointment? Have you heard of the Cinnamon Trust? A friend of mine volunteers for them, they walk dogs when the owner is unable to do so and "foster" them when the owner is in hospital. I'm not a doggy person bet there is a board on MN called The Doghouse, I reckon you would get some advice or help with your dogs from posters on there.

@mrsed1987 Good news about the Lymph nodes. Did you have chemo before the SNB or will it not be necessary?

@Trumpton I was thinking about you reeling and rejoicing at your festival. Glad you enjoyed it. I think it's very easy to wallow at home and do nothing while all this is going on, good on you for pushing yourself. Hope you shake off that chest infection soon.

@wotonearthisthis you are going to be thoroughly scanned! The only one I've had was a trans vaginal ultra sound. Undignified as it sounds but frankly painless and a necessary evil. The name check thing is a bit tricky at first. On my laptop if I do @ it lists the posters on the thread and I just click to highlight. That doesn't work on my android tablet so I put a before and after the name to bold* it. I don't name check everyone every time though Brassica and Bridget are brilliant at it. I try to answer any new posters asap and other recent posters. I did make some notes at first about who was who and what they were having done. Chemotherapy has furred up my brain a bit atm so I'm a bit chaotic.

Which reminds me @SnowsInWater how are you?

@WTF99 Glad to hear the radiotherapy is going well so far. Keep lathering on the cream!

@Zorgothslugofdoom hope the oncologist doesn't keep you waiting. I can't remember, have you had your chemo pre-assessment? Mine was a very long appointment with oncology nurse who went through every fine detail. It seems an odd thing to say but I expect you'll be glad to get started on Friday, the first one is quite nerve wracking becasue it's all unknown but it will soon become familiar. I'm going for number 5 of 12 weekly chemos this afternoon (I hate the afternoon slot).

I’m so sorry to read your intro, Elspeth. It must have been shocking to hear and as skap says, feeling that you don’t haven’t been told yet what it all means is very hard on you. I presume you have contact details for the chemo nurses - was there anyone you got to know a bit during chemo who might be able to facilitate finding out some more info? Or is there another appointment in the pipeline already? Perhaps there might be a trial you can get onto. Please make yourself comfortable here and we will chat about anything cancer or non-cancer. What kind of dogs have you got?

Very pleased to see your lymph nodes are clear MrsL. That’s an excellent position to be in, so take heart from that.

As well as your hair, are your nails growing well meercat? (I think it was you who had a wobbly nail a month or two ago?) I have to admit I do make notes for my doctors’ appointments because no matter how much I’ve been mulling over something in advance (or whingeing about it) my mind invariably goes blank in front of the experts. My husband is helpful at remembering too but not infallible. Notes are definitely the way to go.

So pleased you had a fun festival Trumpton. I think you had really earned that time to let loose and be a normal person again!

It’s good to hear from you too redspook, though like everyone else I’m sorry to hear about your MIL. It sounds as if you will miss her very much. You seem to be doing very well on returning to normal life.

Another shout out to @Doublethecuddles who I believe was due to get some test results in October. How are you doing?

I don’t have much to report, same old stuff as usual here like hot flushes, baldness and grumpiness whenever anyone acts like I’m at the end of treatment. There’s definitely more of that now that only rads is left and I need to let people live when they jump ahead to next year/‘oh you’re nearly there now!’ etc.

Ignore me @Doublethecuddles as I think you may already have updated us...blame the fuzzy brain. But do pop in and say hi anyway!

@Brassica Yes it's one of those phrases isn't it. I have a friend who very jollily (is that a word?) said last week, on my treatment day, "You're a third of the way through". Grr. No actually I'm not a third of the way through until next week and it really doesn't help. Results for you tomorrow? Fingers crossed for clear margins and lymph nodes. How are you healing? Do you have much of a gap before radiotherapy? I was told about six weeks after chemo but of course my surgery was done first so no issues with armpits etc.

elspeth18 so sorry to see your post. Did the oncologist explain why they can't operate? I have just finished 6 sessions of chemo for ovarian cancer, but I had a radical hysterectomy before that, mine was only stage 2, grade 3.
I'm in a car atm, will come back later.

elspeth you sound to be in a really difficult place at the moment and I do feel for you. I would say not to make any irreversible decisions until you have a clearer picture as to what you are dealing with. It does sound as if you have been left up in the air somewhat and many of us here know only too well how easy it is to fill in the gaps ourselves when concrete information is lacking.
Do have further appointments lined up or anyone on the team that you can call on for a chat?
Being on your own is tough. I live alone also and have felt vulnerable at times, but i do have family and friends that I can call on. In my experience people are only too willing to help if they can, but aometimes it can be hard to ask. Macmilllan offer a counselling service so that may be of help to you as a source of support.
Please do come back here as well.

zorgo hope it went ok today for you.

Just got back from the Christie. Will be starting chemotherapy (EC) on Friday. Having 3 rounds of EC, then 3 rounds of docetaxel plus herceptin and pertuzumab. They want me to have a port as I have such poor veins. Have agreed, but feel physically sick at the idea of it! If anyone has any hints and tips, or words of advice, I'm all ears!

I am seeing a counsellor on Friday as Im really struggling, will probably help to offload on someone who doesnt know me. i have a few good friends who have been wonderful, but they are all in their seventies and have major problems of their own so I dont want to keep whingeing on to them. I assume the cancer has spread too far for surgery to cope with. In hindsight I do feel the consultant was holding back from giving me the total picture.
It all seems so unfair, my husband and i worked all our lives, built up good pensions, though never had much actual cash to spare over the years, but the house is paid off and we were in a good financial position on retirement , and planned holidays etc. I lost him 7 years ago from mesothelioma after 45 years of marriage. That has taken some getting over. You all seem very brave on here and I feel like a total coward.

Zorg the port installation is not too bad at all. My advice always would be take all they offer in terms of sedation, etc. It only took about 15 mins and it has been well worth it. So easy for each infusion.

Elspeth you are not a coward at all. What you have been told so far is enough to sweep the legs from under anyone. And you are right, it is not fair. None of it is fair at all. Seeing a counsellor is a great idea and please do keep coming here. I have found the lovely people here have helped me so much.

Brassica it was me with the wobbly nails. They are growing fine now though and I never did lose a nail although I did protect them while they were wobbly.

I had to go in today for a echocardiogram before my Herceptin as a report seems to have gone astray. The can showed a slightly reduced heart function so now the cardiologist wants me to have scans every six weeks rather than every twelve weeks. So far not any great reduction but he want to keep a close eye.

Evening all, just in from work and thought it catch up. In awe of you all once again. Elspeth, I'm finding out that it is lonely - all the worrying and the fears - but the counselling sounds a good plan. Sometimes it's more helpful having a professional to help you sort through emotions and make plans?
toofar yes, I had the scan yesterday and it was ok. I'm not sure if I'm just being melodramatic but I've definitely been feeling worse this week. My husband and I both think my abdomen even bigger than it was 2 weeks ago, and I'm feeling a bit sick throughout the day. They were vague about when/how it hear the results. I've to phone if I've not heard after 2 weeks. I'm not sure how I'll keep my sanity for that long!
I can't shake the feeling of dread this time tho. Last year I was confident the vulva cancer was early stages. This, however - I've got a bad feeling about it.
However worrying won't change anything right now and I'm just trying to keep busy, half sorting my caseload out in case I have to take time off.
Thank you all once again. It's so important to have this safe place to share stuff x

@Zorgothslugofdoom I had the port put in 2 weeks ago and already it’s all healed up and ready for round 2 of EC tomorrow. While they do it under local anaesthetic they should also sedate you so you won’t know what’s going on. It wasn’t painful afterwards, a bit uncomfortable while it settled into place, but actually I think the biopsies/marker insertions were worse. So while the anticipation wasn’t great the reality was easier than expected.

The only problem I had was that I seem to be a bit allergic to the dressings they use - once I could remove them, after a week, I was much more comfortable!

Morning/evening all!
elspeth I'm glad you're going to see a counsellor tomorrow. What you have had to cope with, and are facing now, is horrible, if I were you I'd be grabbing any support with both hands. And you know, even if your good friends are in their 70s, I'm sure they will want to do what they can to help you through this, just meeting for a coffee and chat or talking on the phone. Honestly, I don't feel there's any such thing as "bravery" or "cowardice" with cancer; we all just have to get through whatever happens and no reaction is unreasonable or over the top. I do hope this thread can be a help for you, vent as much as you want, you are welcome and we want to know what's going on for you.
MrsL17 good that the lymph node was removed with clear margins, hope you get the date for the rest of the surgery soon, and that your underarm doesn't get worse.
wotonearth that's a lot of things up and down you to cope with - I've only had tv ultrasounds which didn't bother me at all, not even uncomfortable. You'll be glad when they're all done!
WTF glad radio is going ok so far, gosh your taste buds are taking ages to get back to normal! Maybe they never do, quite?? Anyone who's a long time post chemo who can advise on this? I'd be pretty sad if I could never enjoy a glass of wine again!
Brassica thinking of you with the surgeon appointment today. And I hope physio helps with the vertigo tomorrow. Grumpy is ok, I have dealt a number of swift uppercuts (imaginary) to those telling me I'm nearly there/looking great/being brave/shame chemo was delayed but you had a nice day out - so well-meaning, so irritating.
TenaKween sorry to hear you are feeling worse, the sick feeling could be triggered by anxiety, I guess? It's a shame you don't know when you'll get scan results, I'd chivvy them if I were you, maybe via a nurse if you have a contact.
Zorgoth getting started on chemo felt good to me, I was pretty nervous the first time but it went fine, you'll be very well looked after, and counting down the treatments is great. Hope port fitting is easy.
meercat hope you are pleased with your highlights! It's good that they're being very careful about your heart even though it means more appointments.
Trumpton hope the chest infection responds well to ABs.
catnidge how lovely that you're enjoying walking. I'm so feeble and unfit, 8 days post chemo I keep running out of steam and feeling completely shattered. Other than that I'm doing fine. Aiming to go to a gentle exercise class with DP this afternoon, it's for people with mobility problems, a circuit thing so you just do what you can.

I'm putting a link here to a book I just bought, Theatre and Cancer by Brian Lobel. Just thought some of you might be interested. He is a performer, writer and academic who had testicular cancer 15 years ago and has written and presented several works related to his experience. In January this year I had a very small part (singing) in a show he did at a fringe theatre near me, which was an amazing experience, I loved the show and him, and the show is on again for one night tomorrow and I'm in it (hope my batteries don't run out!). I've started reading the book, it's very short, and am finding it very thought provoking about the societal and cultural contexts of cancer, how everyone relates to it in some way, as patients/survivors/hcps/relatives of patients/bereaved partners etc.

That's a mammoth post! My secret for responding to updates and naming people is to read through and make notes, a slow process but I have all the time in the world! Absolutely no need for anyone to feel they should be doing it, say a general hello and tell us your own news.

just wa*@whythoughh*nt to do a shout out to people I haven't heard from for a bit -
@whythoughh
@ellenanora5
@nellysephalent
@fudgesmummy
@MustardScreams
@porolli
@Toofaroutallmylife
@wineoclockthanks
@yoshimi
@YoureAQuizardHarry

don't know what happened at start of message - finger must have slipped!

I wonder if anyone has wise words about my hospital bag . I have to fly into Manchester alone and will have one night in hospital accommodation before op.
I will have no visitors unti DH can get over on the Friday .
Hope to be discharged into care of friends who live near(ish) to hospital as surgeon wants me to stay close for another week .
I am having mastectomy and DIEP reconstruction.
So... if I take my wheely case I have no one to take it away and nowhere to store it .
I am thinking about a light weight nylon thingy with packing cubes in ?
That I can squish into locker. Will that work ?
Any ideas on what I should buy . No gym bags in our house .

elspeth I'm so glad you've got some counselling lined up and hope it's helpful. Just to say that one of my key supporters through all of this has been a dear friend who is 82. She's like a surrogate mum to me and I really couldn't have managed without her.

zorgo I'm glad you've got a plan at last. I had all my chemo via a cannula and the epirubicin (the red stuff) in particular has made a bit of a mess of my veins....ive got some cording in my lower arm where the vein has become hard and dark....so on reflection a port might have been better. Having said that, I'm now on herceptin only and having that by subcutaneous injection which is very straightforward and quick, so that's good.
It sounds as if your regime is very similar to mine, except I had fluorourocil in addition to the EC, and I had 4 cycles of docetaxel/perjeta/herceptin, so 7 cycles in total. I know I've moaned a lot about side effects, but it is all very doable and I'm sure you'll be fine. Just make sure you discuss with your team anything you're finding difficult so that they can give you stuff to counter anything you're struggling with. They are very happy to hand out anything to make life easier for you so make sure you ask. Don't hesitate to ring your helpline if you need to. I was slow to do that on one occasion and made life harder for myself as a consequence. And of course ask any questions here.

bridget rest assured that I'm managing to force down the odd glass of wine now and it tastes just fine . I have a slightly watery mouth at the moment and a bit of an odd taste still but it's loads better than it was so I'm hopeful it'll be ok eventually.

meercat keeping finger crossed that all continues well with your echoes.

Rads no 4 for me later today. My session yesterday was at 7.15pm which was odd as the department was deserted....I think I was last on the list!

Have a good day everyone.

Sorry trumpton ....crossed posts with you. Dunno what to suggest really....squashy nylon bag sounds reasonable and travel as lightly as possible I guess.

Thanks for the good vibes Bridget. I’ll update you all later after the appointment.

Zorgoth I had a port fitted and it was a bit of a mental adjustment having a foreign body under my skin. I wouldn’t say I ever got completely used to it or enjoyed feeling it there BUT it was hugely helpful for chemo. The puncturing for the chemo line is quick and no messing around with veins, plus obviously the hardening that WTF describes is avoided.

Mine was fitted under sedation which was rather fun, I liked the woozy feeling! Then first EC was delivered an hour or two later. By the time of my next EC three weeks later, it was completely healed. But it is a bit of a lump under the skin and did make me feel a bit ‘liverish’ (an expression of my mum’s!) I won’t lie.

For chemo, have a re-read of the tips earlier in this thread when I think we were advising skap. Dark nail varnish might sound a bit esoteric or low priority to do in advance but I swear by it. EC may well make you feel utterly wiped out after a few days, and of course there are tons of other potential side effects which are of varying impact. I recommend keeping a diary of side effects so you can check against them the second and later times to anticipate what you may need to watch out for. Hair may start falling out after 14-17 days. Have you decided if you’re cold capping? Hope it goes smoothly for you.

Hi to all 👋🏻

@Trumpton I would say wheelie case is absolutely fine. I took one and just parked it next to bedside table. Since you are not likely to have visitors, your space, what little there is will be your own. I don't know what luggage allowances are like on your flight but you don't get much in those little cases and a dressing gown and slippers nearly filled mine so I'd hope you could take a second small bag? I imagine you are an old hand at packing hospital essentials after your two previous ops but don't forget the eye mask .
PS we will be your virtual visitors.