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

trumpton good to hear from you and I'm sorry that things still seem so up in the air.

From what I remember of my deliberations on reconstruction options a good few years ago now, I think the option you're going for is quite complex and involving more than one surgical team in the same theatre.....is that right? I think I would have needed my local surgical team, and a Birmingham team which is my nearest large centre. And I do recall that this was going to take significantly longer to set up than the more simple local option that I went for. I guess it's been further delayed for you with them having to go back for clear margins and then not being able to get them.

That said, now that they have the info that you have some invasive cancer, albeit a small amount which is obvs a good thing, it doesn't seem reasonable for them still to be deliberating as to whether you need chemo or not. It sounds as if they think that decision is borderline and that surgery might be enough to get rid of the invasive cells. It's,a balance of risks I guess, chemo and surgery vs surgery only....and what that means in terms if the outcomes for you.
Unless there's more info they need (doesn't appear so) then it seems as if it should be decision time for the team on that one, and why not at the next MDT? Can you speak to your BCN to advocate for you on that?

I do think the logistics might take a while to get in place, but no reason now for anything other than a clear plan as to what actually needs to happen. I do hooe yiu get it soon.
Meanwhile, has your armpit healed?

Bridget glad you got sorted with antibiotics, and in good time. I think my reluctance to ring the helpline promptly a couple of weeks ago was what lead to me having that horrible over night stay in A&E and 2 wards. I thought I was ok because my temp had been ok. Actually I felt crap and should have been on the phone to them earlier...might have got off with meds at home then instead of being admitted....lesson learned for me!

skap my son lives quite locally but works unsociable hours so not easy to chat to on working days.
I've had an ok day though....resting lots...early night I think after some food and tv.....oh and that flippin immunity boosting injection of course....only 5 more to go

Armpit has healed but I am sore by the end of the day .
I think WTF has summed up my position well . My first thought was just to have a mastectomy here but as I am heavy busted it was thought that my active life style would make a suitable prosthesis unwieldy. A second thought of mastectomy then a later reconstruction was not advised because there is a long wait and the above reasons would apply in the meantime . So ,yes, I need two surgical teams working together.
I will talk to my breast care nurse about the next MDT meeting . I am strongly of the opinion that ,in view of the sneakiness of this cancer I would like the chemo .

I think id be with you on the chemo trumpton. Sneaky is a very good description. Might work well with the surgery scheduling too if you got the chemo out of the way first. It does sound as if the recon option you've gone for is the best for you, though I think it is quite a big deal in terms of recovery.
Such a lot to think about.....I can remember my mind being a bit blown it all.
Hope you get a clearer picture after the MDT. Thinking of you.

Thank you 🙏

Sorry you have been feeling crap Bridget, hopefully the ABs sill see you right.

Glad you got through your day alone WTF, morning here so you should be ticked up in bed hopefully fast asleep by now 😊

Trumpton - that wait must be a shocker. I would also push for Chemo beforehand. Chemo sucks, there is no way round that, but at least some treatment is happening that is hopefully zapping the cancer. I don't understand why they wouldn't do that when surgery is possibly still a way away. I had Chemo first and looking back was quite pleased to get that part out of the way first.

Waves to meercat and Skap and everyone else unfortunately enough to find themselves here!

Hi all, sorry I've only skimmed the thread, it's been a bloody awful week here, ds1 partner was rushed to A&E with an ovarian cyst which burst while waiting to be seen, but the worst thing was they did blood tests and found high levels of carbon monoxide in her blood, bloody nightmare, apparently they didn't have a monitor in their rental, I was bloody fuming, when the agent went to the house with a monitor they thing went crazy beeping, so they are not allowed back in till it's given the all clear, christ when I think what could have happened, so between my own radio appointments and running up and down to the hospital for her and ds1 I'm exhausted.

Brassica thanks for asking, yes I'm going to get help with the driving from now on.

Skap I hope your're ok, can't have been easy the first session.

trumpton I'm sorry you are being treated that way, I hope you get it sorted soon.

WTF delighted for you that you have finished chemo.

Sorry to people I have missed, my head is literally mush, and still no word about the colonoscopy, someone is still ringing me back apparently.

Hello to newcomers, sorry you are here, I hope everyone has a nice restful weekend.

@ellenanora5 that could so easily have ended in tragedy, thank goodness they tested her. And you really didn't need this additional stress. How many more rads do have to do?
I've been a bit rubbish today. Dizzy and lightheaded which is a symptom I often get if I'm ill. Haven't moved much from the sofa. A friend called with some flowers which was a lovely surprise.

Every time I think about it Skap I feel sick.

I've had ten sessions so another ten to go.

Under my arm and breast is getting very sore so I just keep moisturizing as often as I can.

Gosh hope the dizziness doesn't last to long, that can make you feel quite sick, stay on the sofa and do nothing, that was lovely of your friend, mine have been amazing too.

ellenanora god that's awful re your DS's partner, the burst ovarian cyst is bad enough but the carbon monoxide poisoning is appalling, I hope their landlord is prosecuted. Very stressful and frightening for you too.
skap sorry you are feeling rough, hope you feel a bit better tomorrow (today that is!). How's your mum doing, is she getting over the infection?

I am still feeling very sorry for myself, awful cold and cough, antibiotics haven't made any difference yet, but I know they don't work for colds anyway so it was probably over-optimistic to expect a fast recovery. But I am so tired of this, and my hairless nose is so sore!

ellen what an awful situation.....hope ds's partner is ok now. Thank goodness for the admission really....though not great obvs.

skap and Bridget hope you're both feeling a bit better now.

I'm doing ok with side effects....much better than last cycle....though worst day likely to be tomorrow I think. That said, I do have quite a bit of odd sensation in my left foot, all over but mostly on the sole ....have only a tingling toe before so this has taken me by surprise. I hope it goes away! Also have usual head detached from body feeling and squished taste buds but not too bad really.. And another night on my.own as DP out with friends tonight. Early night for me I think.....I'm exhausted from doing nothing!

And yes.....hairless nose is tender.....I keep putting Vaseline up there but it's not really helping!

WTF your foot sounds just like mine, I hope yours does get better. And that tomorrow is no worse than today.

I had proper miseries early this morning, after another night of not much sleep, waking up coughing every hour or so. But now, I actually think I am recovering, thank goodness! I have made brownies (not my best), had a nice visit from a friend, and made supper for self and DP. And we tottered up the road for a coffee this morning. Also started another baby hat. How's your sweater coming along WTF?

Skap hope you are doing better.

Hope everyone else is jogging along ok. Warm wishes to all.

Just seen you on the other thread Bridget saying yiu look like Gollum. Sorry.....I had to laugh!
I was just in the bathroom getting ready for bed and I look such a sight. I kind of feel like now chemo is done I should be back to normal....but far from it obvs. Feel a bit crap tonight actually.....sodding side effects.....blood on my tissue every time I blow my nose....yuck.
I'll leave everyone with that thought then as I say goodnight

Hey WTF I'm leaving a trail of bloody tissues too! And may have been premature saying I was getting better, certainly tonight I've been hacking away just as badly, soddit! Let's hope both of us show some improvement very soon. Will you see your lovely bloke today?

Do you think you have a touch of the post-treatment blues that other people here have mentioned?

Huge sympathies everyone who is feeling down or under the weather or struggling with treatment issues. I need to have a good read of the thread.

Here comes my self indulgent rant, huge apologies, I'm feeling very low.
Had my surgery, which appeared to go OK, but had a massive post op internal bleed and had to go back into surgery. I've had multiple transfusions for the blood loss and various treatments, one of which I had a reaction to so my face was bright red and like a bloated balloon. Lots of side effects from various treatments. Some truly wonderful hospital staff who sat with me all night, they'd requested an ICU bed but one wasn't available.

I'm home now but very emotional, picked up a cold as well. I've got myself into a bit of a state about taking the tablets, convinced I'm going to choke on them. Any advice on swallowing meds most welcome. Also have injections to give myself.

Bridget I bet those brownies were delicious.

wtf the nose does sound very sore. Sorry the vaseline isn't helping.

skap hope the light-headedness improves. I'm feeling very similar but need to motiavte myself to move to avoid dvt. Have 2 weeks of compression stockings, injections to enjoy.

ellanora terrible about the cyst and the carbon monoxide. I hope she continues to improve.

Have just eaten a Satsuma, which is I guess a mini victory.

Oh, and my cat welcomed me home by bringing me a mouse in the bedroom. It's disappeared under the bed so dp is going to try to get it out later!

Hi bridg
I see you were awake in the night. I've been restless too and not feeling so great this morning. Day 7 dip.
I thought I'd be elated after my last chemo and although I was really relieved to get it done Ive felt oddly lacking in emotion....just neutral, though also a sense of 'what now'?
I've been so focussed on getting through it that I'm not sure what I do when I'm no longer doing that! I have got some plans in place for stuff to do over the next few weeks/months but it all seems abstract and unreal at the moment. I've also got some life decisions to make about where I'm living which have been on hold since all this cancer nonsense started up. I'm feeling restless I guess but still not up to doing much.
I think it'll be better next week when im feeling better and can go out. Being in solitary confinement isn't good for me. And yes my lovely bloke will be over later, no doubt slightly hungover from his might out....though he did day he wasn't gonna drink much... and we'll watch t.v. from the sofa which will suit me just fine.
I hope you feel better today and the tissue trail reduces.

Blimey catnidge that sounds awful! You poor thing! I'm not surprised you're feeling emotional. Sounds like you need some time just to recover quietly from being in hospital. Do you have support around you?
Re the tablets, you can sometimes get stuff in liquid form. Not sure who you'd have to ask to get that sorted though. I was sent home from hospital with antibiotics like flippin torpedoes which were horrible to swallow and had stupidly said no to the liquid they'd offered me cos my throat was so sore. Failing that, can you chop them into smaller pieces? I'm sure you'll be ok swallowing them but I know what you mean. Im sick of taking tablets and sometimes feel like I can't swallow another one.
Are you managing the injections ok? Can district nurses help if not?
Hugs for you

wtf I feel quite detached from it all as well as if it isn't actually my life, I've definitely got a bit of a doppelganger thing going on.
I guess with the end date of the chemo it was a goal that you were working toward. Now that you're there it's a bit of a now what situation. I think loss of faith in the body to do the right thing for you is a monumental thing to come to terms with. I think I'l be scanning the horizon for the what next for a long time to come.
I think we need to remembef to reward ourselves for every tiny step and know that we all are actually pretty magnificent, however we look or feel.

My dp is semi retired so I have good support. My 2nd son is actually an F1 Dr who works in derry but is home this week on annual leave so he has been amazing. He is off back to derry today.
I think the injections will be OK, I did yesterday's one. I used to work with a diabetic child who gave their own injections aged 5. I thought of them and just popped the needle in!
I have a tablet cutter which worked one one big pill but annihilated the other. I think it's a mind over matter thing. I had a GA for a procedure back in August and choked on a pill I was given after, so it all stems form there I think.

I have the most spectular brushing from the haemorrhage, we're going to take a pic a day so I can see the improvement.

bridget sorry to see you were up so early, hope you are resting now.

Oh catnidge poor you, I am so sorry! All very crap, and pretty awful that there wasn't an ICU bed for you. Taking oral meds is difficult after surgery and there are so many of the fuckers, I remember I had to make a chart. How many days injections have you got? I think I had 20 altogether but did the first few in hospital. Sending you very warm healing wishes and massive sympathy.
Oh yes WTF I am always up in the night! At this stage between chemo treatments I sit in the kitchen with tea and toast for an hour or so, listening to R3, it's quite cosy. I did get more sleep last night than for the last week so that's good. Sorry you are having a hard time atm, hope you have some nice moments with your fella today (sounds like he'll be glad of a quiet day too!).

@catnidge my goodness it never rains...Your surgery was pretty huge without complications. I think it's common to feel emotional immediately after a big milestone and surgery is definitely that. You are entitled to feel sorry for yourself and you must rest until your strength returns. It's not easy when you are used to running a busy family. As to tablets, we had a problem with my elderly mother. She needed antibiotics and was given horse huge tablets which made her vomit. We really had to battle with the GP to get them in syrup form but they gave in and it's made life so much easier for her. Can you get DP to give you the injections? Sometimes we need to ask for help.
@WTF99 sorry you are feeling deflated. I guess that goal on last chemo has been the only one in sight for so long that it's not surprising you feel a bit down. Getting full health back will be slow but I'm sure another week will see a difference.
@Bloodybridget A cold can knock you for six when you a.e fit and well and you are far from that. (DH has been "suffering" badly this week). I have a history of nosebleeds and they used to give me a cream called Naseptin. Don't know if it's worth asking?

I'm less dizzy, mild nausea, but appear to have numbness in left foot and hand - like a trapped nerve? If this is peripheral neuropathy I wasn't expecting it after one treatment. I was going to ring up tomorrow to find out if they were going to start Herceptin on Tuesday, I will mention it.

catnidge the three brownies I've eaten so far have been ok

bridget I've got 10 days of injection as and 10 days of horse pills so each one down/done will be a small victory.
Whilst you've enjoyed night time tea and toast I hope its not too long before you manage an all nighter.
Although I couldn't mange a brownie right now the thought of one is pretty good. So I'm going to set myself a target to be able to make some and enjoy them I a few weeks time.

skap I would not trust my husband with a needle! Think I will feel better being in control of it!
I hope you get some answers re the hand and foot and find something to help relieve it.

I'm trying to motivate myself to get in the shower but am being firmly held in pkace by a large cat and hot water bottle!