The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

I hadn't thought yet about physio. I'm doing all the standard exercises they recommend but armpit is so tight it's a struggle. When I saw the breast surgeon last week I mentioned it to her, she had a quick look and said I'd I was still having problems when I see the plastic surgeon in a few weeks time they would be the ones to organise physio. Think it was a convenient way to pass the buck as the plastics team are at another hospital!

Mintyneb, yes the excercises are really difficult at first, I struggled. Looking back I wish I had gone to physio sooner - didn't go till about 8 weeks post op. But I didn't have reconstruction (I'm not bothering), so it might be different if you are seeing the plastic surgeon?

Evening, I hope you all had a good Bank Holiday weekend :)

I have been thinking of Sleepy and family a lot

It's been very busy, but welcome to newbies and hello to oldies.

I had a good weekend, though cut a bit short by an A&E trip yesterday. Not neutropaenic, just another possible throat infection. I had two IV antibiotics and I've got tablets too, so hopefully if I do have something it will clear up in time for chemo on Thursday :) these two week cycles don't leave much wiggle room

Tutti I hope that means you've decided to stay :) you are more than welcome here. Be angry if you need to. Everyone reacts differently and we generally just all muddle along together doing what we can to help each other depending on where we are in our "journey" (I always think the whole cancer journey thing sounds a bit naff, but it's hard to think of an appropriate word). As you'll have seen from reading past threads, pretty much anything goes here!

Morning all.
Welcome to all those that are new. I have had a quick read through and tried to catch up a bit.

Glad you have something to help with infection Leslie and fingers crossed it clears up quickly.

Mrs I hope the inflammation has settled down a bit for

Minty- i had all of my herceptin after my chemo as it had to be delayed. I hope it gets sorted for you soon.

Wee- glad that it wasn't lymphodema.

Thinking of you as always Sleepy.

Need to get up as I have to start sorting my classroom out. Two days to get more organised. Acupuncture tomorrow though- that has really helped my hot flushes and sleeplessness.

Love to all.

Good morning lacies.
sleepy sending you lots of hugs.
Leslie hope that infection is sorted.
I should have found out today about my CT scan, but got this has been posponed now as the results have not been made ready. So more waiting and nerves. Had hope to find out and get it over with, but the cancer way of life is always dramatic.

Royal- what a pain for you. The waiting is so horrid. I hope you are able to do something nice today instead?

Oh no royal that's horrid when you have been counting on finding out today. Have they said when the results will be available?

Speedy good luck with new term preparation :)

Morning Leslie. How are you feeling this morning?

Morning! Hope everyone managed to enjoy the bank holiday weekend sunshine. I don't know where this summer has gone- I looked forward to it so much and it seems to have gone in the blink of an eye and I haven't managed to do all the things I planned to do. Last week now and trying to drag it out as much as possible. First annual screening appointments to come in September so not looking forwards to that!

Minty, I had horrendous cording in the armpit for the first few weeks after surgery, and was so worried about it, but after a few weeks it began to ease- do as much as you can but don't overdo the stretching, you still have a lot of healing to do. Three months on I have full range of movement in my arm and shoulder now so I am sure yours will get better too. Try not to worry.

Leslie, hope you feel better soon.

Royal, sorry you have had to wait longer for your results, it's awful when that happens.

Sorry I've not mentioned everyone- but hi to all, hope your day is good.

Sigh yes more waiting. They suspect it "may" be ready by the end of the week.
How is your throat this morning leslie?
fresta i know exactly what you mean re your appointments! Let us hope it goes well.
Waving to everybody else.

speedy the thing I usually when I want to keep distracted is cleaning not really fun but useful!

I'm feeling much better thanks. My throat is still a little bit sore, but not bad at all. I'm seeing my oncologist tomorrow and I have the nurse coming today to take my blood.

I think I'm having my first scan this cycle, which I'm trying to be optimistic about :) I can't really find any of the cancerous lymph nodes that were on/around my neck so that seems like a good sign. And obviously if the chemo isn't doing its job they need to know. But part of me would just like to run away!

Fresta sending good luck for your screening appointments. Will you have a mammogram or scan or anything? Everyone seems to have slightly different check ups :)

royal I quite enjoy cleaning, do you? It's quite productive as distraction techniques go

Leslie I wouldn't use enjoy and cleaning in the same sentence!
However, the more preoccupied I am, the harder I clean so a lot of surfaces getting a very thorough scrubbing this week!

Thanks fresta that's good to know it all comes right in the end. I think I'm just feeling a bit down right now, tired of being tired, tired of being sore and probably more worried than I care to admit about my oncology appt tomorrow. To cap it all off I found I had another unexpected side effect of all this.... when I was in hospital I discovered a huge lump on the back of my head. Drs couldn't explain it but the nurse and I thought it was some kind of pressure sore due to being flat on my back for 24 hours. The lump has gone now but yesterday I noticed that I now have a completely bald spot in the same place- roughly 3-4cm diameter patch where I have absolutely no hair :(

leslie glad to hear you're feeling better and I hope chemo goes ahead as planned later on this week. Good luck with the scan too when the time comes

royal that's no good having to wait again. Let's hope they pull their fingers out and you get the results by the end of the week

speedy hope you've had a productive day in the classroom.

minty good luck tomorrow and sorry about the lump/bald patch

royal I hope you have been well distracted today I find cleaning quite satisfying

Good luck Leslie and Minty for your appointments tomorrow. I know Tutti said her surgery could be as early as tomorrow, I hope you don't have to wait too long.

Outlaw and Royal I hope you are both OK in the horrible waiting for results stage.

Had a long chat with oncologist today. She needs to run her recommendation past her colleagues (I fall into a grey area apparently and there could be several different valid viewpoints) but she would like to start me on another year long course of herceptin. To kick start things off I would need to have chemo but she is recommending I have vinorelbine as it works similarly to paclitaxol but without such harsh side effects (I had to stop the taxol last time due to neuropathy).

So it's not definite yet but she's making appointments for me to have a heart scan, portacath fitted and getting dates in the diary for blood test and first chemo dose. Things could change if all her colleagues disagree with her but if they don't I'll be back on the chemo ward before the end of September.

Gutted but not surprised

Minty I'm sorry you are feeling a bit gutted but the plan might change yet I guess, big hugs. At least this chemo sounds as though it will be more tolerable. I think after these sorts of appointments it always takes a few days to get used to the idea of what's been said and to process it all. It's good that you got to have a long discussion and talk everything through. Hope you don't wait too long for the final decision.

Thanks missy. You're right, it will take a few days of reflection to take it all in. But, if she does get the go ahead, I know I will trot up dutifully to the hospital every few weeks and let the medics do their stuff.

At least I know I will be done with chemo by Christmas and can look forward to getting back to health in the new year

Minty good news that your onc has a plan for you that allows you to avoid a taxane regime. I'm sure the vinochemo isn't as nice as I am imaging from its name, but if you can avoid neuropathy that would be good.

I'm 2.5 months post paclitaxel and my fingers are pretty good now, but my toes are still quite numb. How many taxol did you have? I was only down for 9 and I finished them, but I don't think I could have gone for 12 which many oncs prescribe. My onc wasn't a picc line fan and my veins were shot, and I was so tired, plus the neuropathy.

minty sorry you're looking at more chemo I'm glad it'll hopefully be a little easier than last time. I have a portacath and I love it! I have a numbing cream and last time I didn't actually feel the needle go in at all. I was watching the telly and wondered why it was taking so long then when I looked the needle was already in and she was doing the next step :)

My oncologist appointment went well. She thinks the sore throats are mucositis, so I'm going to have some antiviral medication and also not having the 5FU pump this cycle.

Evening Lacies. I can highly recommend my best friend's "French Sangria"(pear and apple cider with Calvados and soda) if anyone would like some.Very tasty but with a kick like a mule.It was very quaffable in the hot sun . I don't drink much normally.
Starved from midnight last night, anti sickness pills etc. and have been at the hospital all day, however they couldn't get me on the list and I was sent home at 3pm. I now have a date of the 15th. They've also requested PET scan and MRI and the histology, the BCN is going to 'phone as soon as they're in. So some progress at least.
Sorry to all who are still waiting for results or those who are suffering all the" joys" that cancer brings.

For those interested in Emu oil: There is no empirical evidence that it works, but a lot of anecdotal evidence that it is effective for both nerve pain, scaring and arthritis.
I have been using it and have had some change in sensation... but this may just be natural healing.
The BCN told me that after my ANC, I had to moisturize the skin and generally look after the skin very carefully. It moisturizes without being greasy so is at least accomplishing something.
I used Bio Oil last year after my knee operation. I have a scar across the knee and three from the key hole (which was abandoned). I did a control experiment on the scars. One of the key hole and half of the wide scar got bio oil and the rest of it didn't. There was absolutely no difference, so thought I'd give this new snake oil a shot.

Apologies for what is quite probably a ridiculously stupid question, but what exactly is the role of the BCN? One was with me when the consultant was talking to me about what to expect and she sat with me for a while till I got myself together and gave me a number to call. I was a bit too out of it to process what the number was for - is it just someone to talk to, psychologically speaking? Or would she be able to let me know what the biopsy showed unofficially?

The multidisciplinary team doesn't meet till Friday and since biopsy was Thursday they said I wouldn't be able to get me consult till after the following Friday (coming) - so my appointment is on Wednesday next. This has already been a ridiculously long week. I just want to get on with it. I think...

outlaws not a silly question at all. BCNs seem to vary by hospital and individual but generally they are there to provide support and an interface with the medical team. They sit in on key appointments so they hear exactly what you are being told by the specialists so they can help answer any questions. They can help you with explaining your treatment plan, provide an ear to talk to, in some cases a shoulder to cry on and often can be badgered to chase up results for you. But, the service varies enormously - some women have never even met a BCN, others can be notoriously difficult to get hold of whilst others have helped women tremendously when they have been at their lowest. I hope that yours can give you whatever support you might want.

You are at the one of the worst points now waiting for results, the days and nights never seem to end. But weds will come round and then you'll know what you're up against.

leslie glad your appt went well and they seem to have an answer for the sore throats. I like your reassurance on the port :), if my treatment goes ahead I'll have at least 34 jabs in the next year so a port would be a godsend!

mysilly I was down for 4 lots of paclitaxol every 2 weeks (there seem to be so many different regimes for these drugs). I got neuropathy symptoms after the first dose so they lowered the strength for the next one but the symptoms got worse so they wouldn't let me carry on! It will be 2 years in November and my toes are OK but my fingers have still not fully recovered. One of the worst things is when the weather's hot or I'm having a hot flush they swell up and go bright red and sting and burn.