Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Oh @Lisdeflores it's utterly horrid but fingers crossed it's hopefully either just a procedural thing, or even better some positive news.

@Silkierabbit I had delayed DIEP flap reconstruction 17 weeks ago tomorrow. It was a long op - 10 hours. The bear hugger for 15 hours after was a tw@t. I have a hip to hip scar and they have placed my belly button off centre. BUT it was the best thing. I have cleavage that will change shape as I do if/when I put on weight, it will change temperature and, with the best will in the world, be subjected to gravity at the same rate as the non reconstructed side. I was a 34GG prior to surgery (t'other boob was reduced as part of the 10 hours), hated being flat with a passion I can not fully describe (husband barely saw me naked) and now - ta-dah! I have boobs which are a 34F! Yes, they need a bit of evening up, and I have what I refer to as Cornish pasty ends on my hips which need tidying up, but it was without doubt the right option for me. I am soooo much happier than I thought I'd ever be 😁. Back to work in 6 weeks (desk based) and, being honest, could probably have gone back at 4 weeks, back doing hard exercise by 8 weeks 2 days 😇. I may not have mentioned that to the reconstruction nurse, as it's supposed to be 12 weeks, but I know my body...

Liz Hopefully its just a procedural thing. Ours did F2F with oncologist every 3 weeks during my chemo. and it was literally a catch up for me to say how I was finding things. I got them moved to over the phone, if you prefer that maybe ask and see if they can shift. Ours would unless you needed tests done.

Thanks so much Ican't that's really useful. I don't mind not looking perfect after I just am worried about looking like someone who has been in a warzone on their middle. But that all sounds very hopeful on that front. Glad its gone well for you.

Hi all...frustrating day for me today. Chemo #2 scheduled (TC) so get to the centre for 8.30am, things seem to be moving a bit slowly but eventually get port connected and about to put cold cap on. And then informed there is apparently a national drug shortage of docetaxol and the delivery hasn't arrived at the hospital and so they're not going to be able to proceed with the treatment today. They were very apologetic and clearly it's not the staff's fault in the slightest. But they said they'd ring later today to confirm if i should go back in tomorrow or Wed. Didn't hear anything so phoned, no answer, emailed, no response. So now in limbo not knowing if I need to go back tomorrow or not. I know in the grand scheme of things a few days isn't going to impact any outcomes but you get all geared up for treatment and the side effects you know will follow and so when it doesn't happen as planned, it throws me a bit.

That happened to me the first time I turned up for chemo @Atreus - I was completely hysterical, everything had been absolutely appalling before that and I'd psyched myself up for it, and I'd not eaten for 48 hours as I was fasting and they told me that they had made a mistake and my chemo started the week after, despite having had a pre-appointment the day before and told that I had to come in to get steroids for it to start the next day. There was another time as well when they cold capped me then said my drugs were going to be four more hours. I ended up sat in that chair for about 11 hours that day, I also remember trying to phone up the day before to find out whether chemo was going to be on or not and not getting an answer. It was all awful. Also a bit scary they're running out of drugs, hope they find you some

@Atreus that's shitty, as if chemo isn't crap enough by itself without being messed about like that. I hope they can give you some better news tomorrow and at least keep it informed even if you have to wait.

I am in ow ow ow mode with I think probably cording after my lymph clearance. It doesn't sound that common online for it to be that painful? My breasts have been pretty well okay after lumpectomies both sides, bruised and sore but not horrendous. I've had the tingling and numbness the surgeon predicted but again I can live with that (had multiple lymph nodes with cancer so I was well on board with the full clearance). But the (cording?) pain - every so often/if I move wrong it feels like a tube of hot acid just popped open in my arm.

I am happy to read online that cording generally resolves very well with treatment and I'm certainly willing to work at it. But bugger me, I was not expecting this. "Tight uncomfortable" feeling they say online, not "hot acid" 🙄

@Whattodotomorrow I hope the above doesn't put you off/cause concern because as I say I don't think it's that common!! Good luck with your decision, my tactic was to imagine myself six months forward. What decision can you live with and think "ah well, I'm still glad we did it this way" even if the outcome isn't perfect?

@CoachBeardsJane blimey you've been on a rollercoaster!! Completely off topic of thread, but please can I ask what your username is from? It's very random 🙂

Haha! It's from Ted Lasso, I wanted 'Ted lasso's moustache but it was taken... coach beard is the one on the right and his girlfriend is Jane

Love that @CoachBeardsJane I'm having an mastectomy tomorrow and will be at home for four weeks so I'm planning on watching Ted Lasso as never seen it :)

@AllotmentTime sorry you are in so much pain. If it is cording you can feel the cord like a bit of string running from your armpit down your arm to the elbow and maybe on to the wrist. Stretching it hurts but it will snap eventually. I think I’ve found a new little one in my messy scar that is like cheese wire.
The other cause of pain is the nerve damage. There will be numb areas and there will be areas that feel like a patch of nettle rash. I found either a cold or hot pack held against it helped. Also paracetamol ibuprofen and codeine as needed, with night time amitriptyline which I still take 18 months later as it helps with sleep and anxiety as well as pain.

Fingers crossed for you @Atreus . It’s worrying when they say there a National shortage.

I’m waiting for the chemo nurses to call. I’m just not sure what to say to them. I can play down the side effects of Cape and carry on or big them up and get a dose reduction. I will just go with the flow I guess.
I was listening to Ian Marchant on Radio 4 just now talking about his prostate cancer and his limited life expectancy. He was very eloquent and straight talking and his advice to other patients was to keep fighting if you want to live longer. And he said good luck to us all. I liked it.
Sending strength and calm to you all and good luck!
Top

Ooh now radio 4 woman’s hour talking about managing fatigue!

Atreus So sorry that happened and hope they phoned and said today. That was happening during my chemo too but not to me. I don't think delays during treatment have any effect on success rates but its frustrating to waste a day and get psyched up for chemo and it doesn't happen.

Allotment I never had anything like hot acid but did have cording until I rammed it and made it snap, not the official way to do things. But I wonder if that's nerve pain rather than cording. I would speak to your team about that and see if there's anything they can offer to reduce or stop it like meds or a solution. I have found swimming helped my recovery once allowed but don't know if it could help with that, possibly not but at least it's cold. It helped me regain feeling and use of arm.

Top I would just be honest with your symptoms but add you are worried about a dose reduction will reduce effectiveness and they can then make a balanced decision. That's what I did with chemo and neuropathy and they didn't reduce then but later on went to 90%.

Thanks everyone for your support. No chemo for me today...they called earlier and said they still couldn't get hold of any and fingers crossed for tomorrow but tbh it sounds doubtful. So I'm off my head on steroids, awake from 3.30am with nowhere to go! But I'm channelling my frustrations into potting plants and eating salt and enjoying the fact I have my taste buds for a couple of extra bonus days by eating salt and vinegar crisps!

@Atreus - that’s sounds frustrating. Being able to eat crisps that taste like they should is a win though! Enjoy those.
I'm crossing everything for your drugs to turn up tomorrow.

It’s National Afternoon Tea day this coming Friday (who knew it existed!?!) - shall we set a time for the collective afternoon tea on this special occasion?

Thats a great idea @LemonDrizzle10 I'll bring coffee and walnut cake and lots of coffee

@Atreus what a duckaroo, getting all ready for treatment and then not going ahead. I'd be very miffed at having to have the steroids but glad you're using them constructively.

Due to the way my brachy schedule has fallen I've got a whole week and two days of not having to go into hospital. I was so looking forward to it but I've kinda just collapsed to be honest. Done some light exercise but sleeping loads and all my vague plans have gone out of the window. Had a 'normal' day on Sunday which was great, went out for lunch and to watch a rugby match and was feeling perfectly good, so it's side swiped me a bit.

I'm also mildly irked that close friends and family keep telling me I've 'breezed through treatment'. I have got lucky and haven't had many very nasty side effects for much of treatment, but developing DVT wasn't much fun and I am physically and emotionally exhausted now. Gosh I sound like a right moaner! But honestly, next time someone tells me that I'm going to kick them.

Might listen to that fatigue thing on BBC Sounds @TopOfTheCliff it sounds interesting. I think I'm struggling a bit because through most of treatment I've been fine, and despite being warned that it is a cumulative affect and it's quite common to get worse when treatment ends for a bit I naively assumed I was the exception!

Wishing everyone energy and peace xx

@ClashCityRocker I’ve got worse now my chemo has finished. What hair I clung onto thanks to the cold cap is now falling out at a rate of knots. My skin is really sore - feels like I’m sunburned but that’s not happened. I’m telling myself that…this too shall pass…

Shall we have two collective afternoon teas? Elevensies and high tea at 4pm?
Some of us may miss one due to nap times…

@ClashCityRocker it was presented by an OT explaining the 3 Ps. Pacing planning and prioritising. It made sense.

I had my call from the chemo nurse and explained my weariness. We agreed I will trudge through round 4 Cape on the same dose and see if it gets any worse. I’m not filled with joy at the prospect to put it mildly.

I'll probs forget to be honest @LemonDrizzle10 nothing to do with treatment but just an age thing - like Lin on The Change, anyone watched it??

Thabks @AllotmentTime for the six months ahead thinking. That’s a good strategy to have.

How frustrating @Atreus but glad you are using those steroids to good effect. It was amazing how much cleaning I managed the day before chemo on steroids!

Thanks for the woman’s hour fatigue mention. I’ll def listen to that and @TopOfTheCliff I wish you good spoonage (I just made that word up but hopefully you’ll know what I mean!).

@Whattodotomorrow it’s a great word! Thanks

I have a load of gift vouchers to use up so DH and I are going to venture out of our rural town and visit DS in that there London in two weeks time. So far the vouchers cover a Thames boat ride and Tea at Harrods. I fancy the Abba thing if it’s still on and maybe the Greenwich Maritime museum. Any other suggestions?

@LemonDrizzle10 I love the idea of tea on Friday. I may have to make your namesake

@LemonDrizzle10 definitely a double sitting to accommodate nap times!

@ClashCityRocker I don't think I would ever tell someone who's had DVT that they've breezed through treatment!!! 🙄🙄🙄 you're justified in being annoyed with that!!

@CoachBeardsJane thank you for the explanation, lol 😁

@TopOfTheCliff i wish you a whole drawer full of spoons and one or two sporks as well. Hope it gets better.

Hmm I'm now another one with a decision to make. Just had my surgery results. They found another lump in surgery plus further DCIS, didn't get clear margins on all of it, so now I'm choosing between a mastectomy or a second lumpectomy.

On the other hand the lymph node outcome was way better than expected and only one cancerous. So that's fab news which I was not anticipating. I take back what I said, I needn't have had that full clearance 🤣 still though, that was the right decision based on what we thought at the time.

But now do I go for second lumpectomy and then radio later, or given that we know this breast has/had at least two cancers plus DCIS, (plus other papillomas and whatnot, they're always finding another thing to check) do I go for the mastectomy?

In theory the outcomes of lumpectomy plus radio vs mastectomy should be the same, but that's for the population as a whole compared to for me when we know I have a lot going on in that boob!

In the meantime thanks all for the sympathy and tips. I am maxing out my paracetamol and ibuprofen today with a view to taking the codeine later. I have had the drain out now so can start moving that arm more, I'm in hopes maybe that will help. Setting to with a will on the physio exercises! (As soon as I've had a cup of tea and a rest...)

Tough one @AllotmentTime - I always thought if there was any doubt, I'd just have a mastectomy, but when it's a real life choice it is different. Don't push yourself as you recover, your body needs to be pampered and you need to regroup your thoughts, as you're left with a situation you didn't expect.

I'll do the scones for Friday afternoon tea, if that works for everyone?!!

It's really good! Good luck tomorrow