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

snow I think its just important to post what you can, when you want. In my head we are a large group in a pub, it's a bit noisy with multiple conversations on. Sometimes things might get missed, but the point is we're a group of mates together!

bridget thanks for looking at your diary. I guess I wonder how you know when it's safe to start lifting items. Is the only way you know when you feel the strain

braasica thank you for the video. He makes it look so easy!
trumpton good news re hospital.

Hope everyone has a good evening and all those colds start to clear up. Hope the weather improves, its been grim here.

Rads tips that helped me @WTF99

• drink lots of water (I know that's a general one but does help the skin to stay hydrated)
• find a cream that suits you. I used the Moogoo Natural silk milk udder cream.
• wear as much cotton as possible and non-scratchy clothing.

It is tiring, not in a 'hit by a bus' way the chemo is, but especially towards the end, I really did feel exhausted (for me an hour 1/2 commute each way didn't help!)

Hugs to everyone who needs one

Agree with wineoclock'S rads tips. Would just add to follow advice in products to use and those to avoid to the letter and use the moisturising products little and often

When my skin started to get a bit sore I found aloe Vera gel cooled it down quickly

At first I thought rads was a walk in the park compared to chemo and in some ways it is but it does progressively sap your energy so be careful about doing too much in the early stages.

Agree with wineoclock'S rads tips. Would just add to follow advice in products to use and those to avoid to the letter and use the moisturising products little and often

When my skin started to get a bit sore I found aloe Vera gel cooled it down quickly

At first I thought rads was a walk in the park compared to chemo and in some ways it is but it does progressively sap your energy so be careful about doing too much in the early stages.

@ellenanora5 well done for pushing on. How is your DS's partner doing after her ordeal?
@catnidge love your pub analogy.
I just had a conversation with DS. He had imagined that I was having chemotherapy with a bunch of other breast cancer women and could chat and compare notes. Of course it's not like that. I think I was the only woman in the room last week and everyone else was either dozing or in their own little world. "Well", said DS, "perhaps you could find somewhere online where you could chat with like minded people for mutual support"?" I told him about this thread and some of the people on it. As a product of the digital age he sees nothing unusual in making real friends online, whereas DH would imagine mad axe murderers

@Skap I was fascinated by the different array of people in for chemo on the same day as me. I was youngest but also on the longest one.
I am not looking forward to next chemo, it took 9 hours!!!
My hair is beginning to go, I was interested in the eyebrow suggestions upthread. My mate bought me a glamorous turban, so what with drawn on eyebrows and big earrings I can be Carmen Miranda Its a look, right?

Hi everyone - thought I'd check in. I caved in today and phoned my breast care nurse to ask about my oncologist appointment, as it will be 2 weeks this Wednesday since I got my diagnosis. Have an appointment at Christie's for wed 23rd, though no further details at the moment. Having an MRI on friday this week and they're going to chase the appointment to have the clip inserted into my larger lump. Glad things are moving, but it still feels like it's happening to someone else. I don't know if it's the anti-anxiety medication, or a way of my brain trying to protect itself, or if I'm just a bit weird, but it doesn't feel real at the moment - maybe I'm still in the shock phase? Has anyone else felt like this? I have to admit it's preferable to the panic I felt before, but it's very strange!

Hope everyone manages a reasonable night's sleep - the medication sort of knocks me out for a bit, but I don't seem to get much actual restful sleep!

I’m going to shamelessly complain and whinge.

I really fucking hate cancer. Mine was meant to be simple and fine and ok. Lumpectomy and rads. Done.

But my margins are shite so I’m having rads and then chemo. Nope. Do NOT want to. Surely they do chemo before rads?! Isn’t that a thing? What’s the point of rads if you’re not killing the cells?

I’m having one of those completely manic evenings. I’ll cringe in the morning. But if anyone has any info that’d be grand.

Just fuck cancer. This isn’t fair. I am just so fucking done with this shite now.

Oh mustard that's disappointing. It is so hard when the goalposts get changed. I'm not really sure what the different reasoning is for the various orders for treatment .....but I guess whatever the order, yes it is shite that now you're getting chemo when that wasn't the original deal. You've every justification to have a rant.

Thanks for rads tips guys.....I'll look up the moisturiser. I'm a bit concerned about the fatigue thing as it's a half hour drive to the hospital and currently I don't have anyone who can take me....certainly not everydsy for 3 weeks.....so was gonna drive myself. I also have an implant in place which isn't ideal, and hoping that comes out of the experience unscathed...we'll see.

zorgo I was wondering how you were doing. The waiting is so horrible but sounds like youre doing well to stay so calm. It will be so much better once youve got a clear plan from the oncologist. Hang in there.
emperor blimey 9 hours was a marathon! I think my longest time on the unit was probably 8, but some of that was waiting for repeat bloods.
I'm just on my way back from the virtual pub now, gonna sharpen my axe ready for tomorrow and then off to bed.
I felt really crap this afternoon after a great start to the day.....had a little pep talk from my rl chemo buddy and felt better. And to quote Scarlett O'Hara......tomorrow is another day!
Night all...

Hello to all from the night watchwoman!

MustardScreams really sorry about your crap margins and having to have chemo after rads. Rant completely justified.

Trumpton I love your friend's card! Awful having to tell your MIL but at least that is behind you now. Hope you get a decision re chemo and Herceptin soon, and that throat and cough improve (so many of us with this, you'd think we were passing it on to each other!). The appointment on 30th is just to discuss options for reconstructive surgery? Great that you can get to Cornwall with no extra expense.

Catnidge re lifting things, I just went with how I felt, I certainly didn't try hefting anything actually heavy though. What sort of things are you thinking of? A friend who had a hysterectomy said she didn't even lift a kettle of water for six weeks, it would never have occurred to me not to do that. How's your cold?

Ellenanora hurrah for cake! I'll have a slice of lemon drizzle, thanks! Sorry about your persistently sore underarm.

Skap hope second chemo goes ok today. How long does yours take? Glad to hear the neuropathy has cleared up for now, I read the other day that it can happen very early on in treatment, you will tell chemo nurses and consultant about it, won't you? Are you still suffering from dizziness? I've had spells of light-headedness after chemo too.

WTF is it a big move you're contemplating? How far will you have to travel for radiotherapy, could you afford cabs or would that be ruinous? I think the sudden "batteries died" fatigue is very common, also the "I feel better - no, I feel rubbish" thing. Also hard to keep spirits up when food tastes awful!

Zorgoth glad you have a date for the oncology appointment. I completely remember having a feeling of unreality re cancer for ages, even after the surgery with a foot-long scar I was kind of waiting for someone to tell me it was all a joke. It just seemed such an unlikely thing to happen to me!

meercat definitely let's count coughing as exercise! I'll be trying out for Tokyo next year!

Brassica that's good you're feeling ok atm and that taste buds are functioning normally! Sympathy from me re hairlessness. I saw the back of my head for the first time in a changing room mirror yesterday, blimey it looked weird!

Emperor that is a long time for chemo, did that include waiting for drugs etc or was it actual infusions? Longest time I have been on chemo ward is 7 hours, I think, but infusions and other IV drugs only take 6 max. Are you finding it hard losing your hair? I had mine cut very short before first chemo and shaved as soon as it started falling out, I couldn't bear having it drifting down! You go for the Carmen Miranda look, fab!

Well, I think I'll go back to bed now. Pretty sure I won't get to choir tonight, which is sad. And my DB, who has been an absolute rock these past months, is off to the far east for three weeks today, I spoke to him yesterday afternoon and then felt a bit weepy

Hope everyone is taking note of admonitions to keep posting and not fret about who they mention/remember, or whether they have enough "credit" in the support account!

Carrying on the nightwatch briefly.
Mustard Moving the goalposts is really hard to deal with. I find the one thing that helps me cope is knowing what is happening. If they take that away it's so much harder. From what I can tell there seems to be a big variation in pattern of treatment. Initially I was told just surgery and rads. Then I was told chemo, followed by surgery then rads. Then they decided surgery first! I guess it means the plan is tailored to meet the specific needs of the patient.
Hope Bridget is asleep by now.
We should have a clever name for the pub.

Morning all, I slept reasonably well. Unfortunatley, dh ended up on the sofa. Since I've been home the dog and cats have decided they will lay next to me the whole time, possibly to ensure I don't go anywhere again. Dh ended up on the sofa.

I'm going to try to sort out my sick note today, looking at my discharge notes I think they've put the wrong cancer on it(it was a choice between endo and cervical, I was told endo but bites say cervical) which is a bit unnerving.

skap having cancer can feel really lonely, even though it's so common now. I always thought there'd be more support in real life but actually a lot of the time you're just bobbing along trying to make sense of it all.

I'm not good at witty pub names but suggest 'The Patience' as you certainly seem to need a lot of it with cancer.

mustard sorry things have been changed for you. Any change is massively unnerving so feel angry, scream, shout and sob on here. It is a big deal. As skap says treatment is tailor made which is good but can be scary.

bridget, hope you are snoozing away now after your stint on the night shift.
In terms of lifting I guess I expected something like a hand book of when and how to lift!
I'm hoping to go back to work after 8 weeks and so need to work my lifting skills to be able to cope by then. If I'm only kettle lifting at 6 weeks I definitley won't be ready for work at 8 weeks.

Hoping you feel well enough for choir tonight. My dh sings in one Tuesday eve and they are getting ready for their Xmas show.
It must be very sad to see you DB go so very normal to feel a wobble. Does your DB live near you?

wtf I hope the drive goes ok. All the small things that need sorting out...

zorgo I still feel like it's not happening to me! I wonder if it's some sort of coping mechanism. The brain saying, 'OK, you're just not ready for all this yet'. Glad you are getting a little further forward with appt info. Waiting is the pits.

emperor, Carmen miranda is indeed a look and I'm sure you rock it!

Hope everyone has a good Tuesday.

Morning all!
Love the idea of a witty name for the pub! Patience (with the pun on "patients") is very good! I've seen The Endurance and The Perseverance in London - named after ships, I think.
Have had 3.5 more hours sleep, thanks . . cough, cough.
catnidge if you do decide to go back to work after 8 weeks but are not able to do all the lifting required (you're a scaffolder, right? ) can anything be done to help?
My DB is in south London, I'm north, but there's a good public transport route. I've seen him every week since I got ill so this feels like a long gap. But he will keep in touch and my lovely SIL might be able to come over.

In fact I do think The Patience would be a brilliant name - the pub sign showing a bald figurehead with one breast!

Is breakfast on offer at the Patience? Not that I can eat it at the moment but I will be looking for a crispy bacon sarnie on white bread with ketchup as soon as my taste buds recover

Well of all the interesting things I've done in bed, I never thought knitting would be one of them .....but here i am, grey day outside, listening to the radio and getting on a storm with my jumper.....it's quite nice really. Gonna give myself a break today as still feeling a bit crap but trying to go with the flow and have the best time I can whilst waiting for it to pass. That's the theory anyway.
My lovely friend is driving me to my rads planning appt on Friday. I'm hoping I'll be given some idea of what my schedule will be and then I can start making transport plans. I also want to plan a couple of spa days, with another friend and with my dd, so would be helpful to know when rads will be finished. I need to plan some treats!

Wishing everyone a good day

Patience Inn (Get it?).
Just setting off for hospital....

Hi I was diagnosed this year with breast cancer. Had a lumpectomy and radiotherapy. I'm still feeling some pain, from the whole experience despite being back at work and trying to get to normal. I feel like I don't know what to talk to people about anymore. The last year has just consumed of appointments.

Isawyou welcome but so sorry you need to join is here. Trying to get back to normal takes time. The whole process of diagnosis and treatment is an enormous shock to the system. I have found this thread an enormous comfort and support. Talking with people going through the same process and who understand exactly how it feels has been amazing. I am sure you will find the support you need here.

I am loving the idea of The Patience especially if bacon sandwiches are to be served! The great thing about virtual bacon sandwiches is you can eat as many as you like as they have no calories at all!!

I am off to the hairdresser today and plan to ask for a skin test. I am aware that my hair has thinned but I don't think it would be obvious to anyone else and the shedding seems to have slowed down a lot. The grey roots are something else though! If it was white roots I would just leave them but I am blessed with a dirty patchy grey and I cant wait to get back to my highlights to even things up. I know ion the grand scheme of things hair colour is the least of the least but getting back to feeling like myself does feel important. Will also be the first time in a while that I have driven myself anywhere so another step to reclaiming myself.

The Patience Inn (thumbs up to Skap) will definitely serve a superb bacon sandwich, WTF! What else would we like - a log fire, comfortable chairs, a lovely garden for sunny days? Listening to the radio and knitting sounds perfect for today, as does planning treats for when you're functioning better.
isawyouinTesco welcome to the thread, lots of women here with breast cancer who I'm sure will pop in soon to chat, it is grim how cancer takes over your life.
I was going to go out in the hope of finding the beautiful shirt that JL didn't have in my size yesterday, and that's out of stock online, in another shop, but just realised I'm so tired I need an hour or so on the sofa.

I'm now also back on the sofa, although have pottered and done paperwork this morning.

OK, shall we declare the 'Patience Inn' officially open.

This pub is situated in a volatile, ever-changing landscape, its sign of a bald headed one breasted female creaks in the wind. No one really wants to visit.

However, once you are inside this pub is a refuge for short or long term travellers.
The fire is always crackling, plenty of comfy seats to mold around achy bodies. Our outside garden area is sunny and welcoming.
Food and drink are always available, bacon sandwiches, afternoon tea. You name it, we have it.
Most importantly there is always good company in the Patience Inn.

Welcome isawyouintesco it must be difficult to settle back in when you've had such a full on year. My current topics of conversation are brexit and Christmas!

wtf I've been bought a knitting kit so may join you. I haven't knitted or sewed since I was about 10.
Glad to hear you have transport sorted for Friday.

brassica I managed to get one compression sock on following the video. I felt that was pretty amazing considering how hard it currently is to reach my feet. The other foot just wouldn't comply with the sock so had to wait for dh to wrestle with both

meercat good luck with both the drive and the strand tests. Are you allowed to use the root colour sprays in the meantime?

bridget I actually work in a school but do spend a fair bit of time up ladders, moving furniture etc!

A good afternoon to all

The Patience Inn sounds great....brought a little lump to my throat when I read your description catnidge . I blame the chemo for making me emotionally all over the place.

You sound about as experienced in knitting as I am! It's surprising what you can achieve though and it's just so nice to pick up and put down.

Love the pub analogy. Just popping in to the saloon bar to see who's here. I'm going to take this leather wing-backed armchair near the fire with the furry throw and footstool. I'm sure the barman will be over shortly with my usual.

What's everyone having - drink and crisps of choice? For me, a pint of cider and a packet of mini Cheddars I think!

WTF your cosy nest with knitting and the radio sounds perfect for taking it easy. Are you feeling any better today? I'm sure you have lots of friends who would be happy to organise a rota for getting you to and from the rads appointments. It's a good practical way for people to help and in my experience the helpful ones are waiting for something to do.

Skap I hope your second dose of poison has gone smoothly. Like you and Bridget I've had quite a lot of dizziness. Actually mine is vertigo not really sure how dizziness differs and I've now got an appointment with a neurologist to see if he can do anything about it. Did yours go off by itself? My oncologist was puzzled that I have it and dubious that it was anything to do with treatment but I wonder if it's a bit of an under reported side effect of chemo.

Bridget I hope you get your shirt before it sells out again. Are the drugs helping with your cough yet?

Mustard I saw your other thread on AIBU last night and you do sound totally fed up. Hardly surprising, you are so young and it is unfair to have this at any time but definitely shouldn't be something to trouble a 30 year old! You are safe to rant and rave on here. In terms of treatment, it does seem unusual to have surgery/rads/chemo but I wonder if that means it will be quite a short course of chemo given that the first two rounds should really catch everything between them. If you are confused can you request an oncologist appointment so he/she can spell out why it's this way round for you and even why chemo is needed at all? I'm assuming you haven't seen them yet and it's all been breast consultant appointments so far.

Isaw welcome to the thread. Are you finding that people don't know what to say to you, or perhaps that they just want to talk about cancer? Both would be pretty normal I expect, if not helpful to you. Particularly if no one wants to stick their neck out and say the wrong thing. Do you have a supportive boss, did you feel as if you had enough time to get better before returning? It may be that talking through what has happened to you this year would be helpful. That can be with us if you like, or you could seek counselling.

Our car is in for MoT and service today (exciting). It got through the MoT but apparently needs shitloads of stuff doing, like four new tyres, new brake pads...ouch. Neither of us is working at the moment! I'm on sick leave obviously but DH was made redundant in the summer and aiming to start a job hunt once my surgery is done. So we could probably do without expensive car fixes. Hmm.

Oh I meant to say catnidge I wasn't expecting you to be wrestling your own compression stockings on after major surgery! That's impressive but given how physical it is, probably best if you get your OH to do it? I practically put a shoulder out helping my daughter into her sports socks this morning, and I was using 'the technique'!