CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Thanks Mysillydog, I've just read the news re the APHINITY trial too. I'm so so angry that there are effective and safe treatments available, but the NHS won't fund them. To be honest, I'm furious about the state of the NHS in general, and how it's being allowed to go down the tubes, which is what causes the ridiculous posts like you experienced. There is no need in this rich country of ours for people to have to fight over who should be treated, whether it's about IVF, knee replacements or life extending drugs.

Hello lacies.
Leslie, so sorry about your friend. Like mrs I tend to read more than post. Not much to say really and trying to go along with life and being there for DS.
Mrs, good to hear from you. I hope the check up is reassuring and that the whole process does not take long.

Waves to all
I've been away on a couple of short breaks with family so a bit behind on here. Hope everyone is doing ok. Sorry to read about your friend Leslie
Flippy like you I am too. I am interested in some drugs which may help me but although the NHS have access to them my cancer is the 'wrong type' (not lung cancer). They are treating me as a lung cancer patient but I can't access the new drugs It's very frustrating.
I am seeing a top onc in London tomorrow to see if he can offer any advice or treatment options.

The sun is out here so I hope everyone is having a good day.

Hi all.
I managed to get an appt this morning with my oncologist. The red blotches around my scar are, as I feared, the cancer. Surgery didn't get rid of all of it. I know people use the word devastated a lot on MN - but I am devastated. Every stage of the bloody cancer hasnt gone to plan. Chemo didn't work, clearly surgery hasn't fully worked and now all my hopes rest on radiotherapy. Which as I've always viewed as a precautionary treatment than an actual 'cure'.
I keep thinking if I'd had surgery first and then chemo maybe the outcome would be different? I don't know. I do believe they put me on what they thought was the best route based on how I was to begin with - but I'm now very scared.

I don't know what else I can do to help myself. I'm taking turmeric and black pepper supplements but apart from that I don't feel very well informed or sure what it real and is hocus pocus.

I have been assured they have more drugs - not chemo / but antibody type they can give me. I was meant to be having my port removed tomorrow but not anymore.

I'm trying not to think the worst - but nothing so far has exactly gone in my favour.

I did win a £30 candle from a local designer furniture shop yesterday though

rocket I'm so sorry to hear that the bastard cancer hadn't been killed by the chemo and surgery. Hopefully they'll swiftly get you on a plan. Do you have to have more biopsies?

rocket I am really sorry to hear this. I'm not entirely clued up on types of breast cancer. Is it in the skin? Would further surgery be an option? I hope the radiotherapy works well. Do you have a start date yet? amber is clued up on which complementary type stuff has been properly researched. From memory... vitamin D and aspirin are two to look into. Obviously check with your team, and aspirin isn't suitable for everyone. Hopefully she will have some helpful suggestions next time she's on MN.

It's good they've got the antibody drugs too.

But not the news you wanted at all

I've often wondered how things might be different if I'd made different decisions. Sometimes it is hard to switch that off. But I remind myself that I can only make the best decision for me at the time. It might turn out that it would've been better another way. But equally perhaps it's useful that they know the chemo didn't work well for you. If you'd had surgery first then you wouldn't have known the chemo wasn't helping.

I hope your luck will improve from here well done on the candle!

chewing that's shit. I hope the specialist has access to better stuff. Did you enjoy your holidays?

royal it's lovely to hear from you. I'm glad you are getting on with life

Mysillydog I'm really sorry you had that reaction. Well done for starting the thread. People can be so weird about the NHS. I bet they'd think differently if it were them or their sister or even their mother being denied the drugs. Ideally there would be enough to go around and everyone could have all the treatments they need. But cancer drugs should certainly be near the top of the list!

mrsrhod good luck for your check up it's a pain they can't do it all in one go

Chemo today. Feeling a bit bleurgh!

Oops sorry rocket I asked a lot of questions feel free to ignore

Leslie I did ask today if this was now considered skin cancer but it's not, still breast.
I start radiotherapy next Wednesday, so not really much can be done until that is underway. I've had the planning scan so it's 15 days of treatment from then on. I will have a thing called a bolus which is a thick sheet of gel that will be on my skin which disseminates the rays over a wider area so the rays really attack all of the skin. I am going to be very sore. Until that soreness goes away it may be hard to tell if the cancer has gone.
Pepperabbit He did say they could do a biopsy but he knows and I know that just by looking it's pretty obvious what it is. I will have a body scan after the radiotherapy.

I take high dose Vit D already as had a very low reading a couple of years ago after a bad fall when I chipped a vertebrae. Was worried I was osteoporotic (sp).

DH isn't taking it well at all. I feel like he's thinking the worst and his knee jerk reaction is to put everything on hold. This is despite for at least the next 6 weeks we are on the same path that we were on yesterday before this latest confirmation.

Would be good to get amber thoughts at it was she who made me go and read about turmeric and black pepper.
Everyone mentions no sugar - I don't put sugar on anything and rarely eat processed foods etc but I do like chocolate and fruit.

Rocket I don't know what to say Just try to keep positive. It's good that they have some drugs still to try x
Leslie hope you feel better tomorrow. I did enjoy my holidays. One was close to home and the other was abroad. Took a few days to recover from each trip as I am feeling increasingly tired now.

Oh rocket I'm so sorry - this must be so frustrating for you. I'm sure there are many more treatments you can have to get things back on track.

Leslie my condolences to you.

For all the other lacies I wish you the best day possible.

rocket fingers crossed for the radiotherapy doing its job, though it sounds very uncomfortable especially with the bolus! I'm sorry your DH is struggling. Even though nothing's changed for the next few weeks, perhaps it's just the last straw having something else unexpected. The various cancer charities have helplines if he needs to talk it through with someone neutral.

chewing I hope you got some sunshine and that lovely warmth that seeps right into your bones :)

I'm having a lazy day today. I always feel a bit grotty while I'm having the pump. It's not a very nice looking day anyway so not really a hardship to stay indoors and potter about!

Just popping in to wish you well for your trip to the top oncologist today chewing

Hi everyone. I'm just checking in to wish everyone a nice weekend. I've been lurking a bit but the thread seems very busy ATM so not been able to catch up with everyone.

Rocket and Chewing my thoughts are going out to you too and I'm hoping you both get the best treatments available.

Lesley, sorry to hear about your friend

Evening all. It's been a long day.
The onc was very nice but needed more information before being able to discuss any treatment options. He wanted various test results but none of these tests have been done so far. He said I was an extremely unusual case and not seen anyone with my diagnosis before. I present as being very fit and healthy which is not what you would expect with my prognosis. He recommended another biopsy so I am having that done early next week. The roller coaster continues....

Goodness me chewing I don't know how you can respond to that. Why send you to the onc before the tests have been done - surely that's just wasting everyone's time?! I'm so sorry you're going to have to go through more procedures and waiting. I hope you have things to distract you

Argy the tests weren't done because the NHS don't do them as a matter of course and I don't fit their criteria apparently. I did ask for a certain test but was told that they don't do it however I am now getting it done after contacting the pathologist myself and agreeing to pay for it!
I self referred to this top onc for my own peace of mind after being told that nothing more could be done.

The onc treats all his patients as individuals so takes the time to understand how the cancer works to enable him to determine the best treatment. He is private but also works in the NHS and said these tests could have been done by them
I shall get my biopsy results and take things from there.
Hope everyone has a good weekend.

chewing how frustrating to have another delay he sounds like an excellent doctor though. I hope the test results come back asap and that he can sort out a suitable treatment plan. I'm glad you're seeming fit and healthy :)

I hope everyone has a good weekend sending lots of love to those lacies who need it, especially rocket

As a warning, I don't know if anyone here watches Grey's Anatomy, but there's a breast cancer story in the current series. (Sorry, I don't like to post spoilers, but thought it might be upsetting to some.)

Hello everyone, haven't managed to get on the laptop for a while again, did read and try to catch up on posts last night, Chewing and Rocket sounds like you're having a rough time with things and Leslie so sorry about your friend.
Mysillydog people on this site seem to be getting worse at being utter arseholes, it just seems that people have no compassion for others and just think of themselves. It's not a race to the bottom/I have it worse than you so your situation is irrelevant. I find it incredibly sad. There were some awful comments on a post about widowed parents allowance how people should plan for the future and make sure they have life cover and basically tough if you haven't and we shouldn't be wasting tax payers money etc etc, even though it's a "benefit" based on the deceased NI contributions..
So my news is that I had my CT scan and it only blooming well showed up that I have a pulmonary embolism.... Which is super and now I have to inject myself with anticoagulants for 3 months minimum...
I've had two rounds of cetuximab and starting to get a lovely rash on my face around the nose mostly. Have the three week break though so have booked a couple of nights away to Norwich, paid the extra to make sure we can cancel last minute in case anything goes horribly wrong beforehand.
Also, annoyingly, found out that I missed out on full pay from work for 6 months by literally two months :( Because I started work in January 2013 and my sick pay started in November - you need to have worked for 4 years to get 6 months full and 6 months half pay but because mine was just under I only get 4 and a half months full and then 4 1/2 half pay. I know teaching is fairly good for sick pay and it could be a lot worse (I debated changing jobs last year ..) but it's frustrating as it does make a couple of thousands pounds difference....
But aside from all that things aren't terrible :) Children had good school reports at parent's evening and my new bedroom in the extension is being painted as I type. Going to the neighbours for a lovely Sunday lunch tomorrow and friends taking me to dinner on Monday.
Hope everyone else has a relaxing and fairly healthy weekend.

fluffy SNAP! My first CT after starting treatment also showed multiple bilateral pulmonary emboli I received a panic-inducing call from the duty radiologist at about 8pm one evening. I assumed they had found a horrific tumour or something. It was quite a relief (only in cancerland, eh!) to hear it was just PEs. That was September so I've been on the injections for almost six months. I'd hoped to change to tablets soon, but they've just given me another two months' supply. How are you finding them? I've mostly managed to avoid bruises but my stomach is getting a bit tough and lumpy.

The rash sucks, but I expect your team will be overjoyed! My lovely oncologist did a little cheer it has settled down now and I just get a few spots around my nose and chin. I'm on permanent antibiotics for my gross toenails so I think they subdue it. If it gets really bad they can give you those, or a lotion.

I'm glad you are fitting in some fun things too. Always good to have a little holiday to look forward to. And the new bedroom sounds exciting :)

MN is being very slow for me today.

Chewing, it sounds like the new onc is a good thing for you, I really do hope that they can come up with an effective treatment plan.

Ach Rocket, how totally and utterly shit for you. As Leslie says, we can only make the decisions we feel that are the best for us at the time. I wish I'd done things the other way around and had chemo first, but at the time I didn't know the cancer had spread to so many lymph nodes or that there was an alternative chemo regime. Everything happens so fast, your head is spinning trying to take it all in, and you've just got to do what you think works for you at the time.

I've had some worrying visual disturbances, headaches, dizziness and general pressure-y feelings around my eyes - so not the catarrh in my ear that my GP diagnosed, and I'm now waiting for a brain scan. My onc thinks it's 'unlikely' that the cancer has spread but they need to check. You can all imagine how I feel about it. I'm freaking out a bit because after the steroids with yesterday's chemo the headaches eased, but they're back today. I've been waiting almost 3 weeks for the CT already, if I don't get an appointment this week, I'm going to go private - again.

Fluffy, that's annoying about the sick pay. I know what you mean about some of the general shittiness on this site these days. I've been on MN for over 9 years, and I'm pretty shocked by some of the stuff I see now. This is about the only thread I post on.

Hope everyone is doing ok over the weekend

Flippy I'm sorry you're still waiting for your CT. Any chance your nurse could hurry things along a bit?! After all you've been through it's not really fair to drag out the horrendous waiting for so long. I hope you can avoid going private, though completely understand why

fluffy a public service announcement - do not inject your blood thinners in your thighs if you can avoid it. I decided to try it today. The district nurse recommended it and the leaflet cheerily says I can use the outer thigh. But ouch! I couldn't really pinch enough flab. I store all that on my inner thighs my whole upper thigh was throbbing. I sing a little song as I inject it, as a distraction. But tonight's performance was punctuated with lots of swearing.

I hope everyone gets a good night's sleep.

Morning all, finally checking in to say hello.

rocket I'm so sorry to hear that the cancer is still there, really hope the rads work and that your team have something positive in reserve as well

chewing sounds like you've found a decent consultant there - hope things can move quicker now.

flippy sorry to hear you're still not feeling great. They sound worrying signs but fingers crossed your oncologist has got it right and that there is a more innocent explanation.

leslie ouch! Don't envy you all those jabs!

fluffy what a pain about sick pay. First time round I was with a company (revenue of over £3 billion) that gave me just 4 weeks paid sick leave as I'd been there a year. I did manage to get that increased to 8 weeks (max under their policy) but that had to cover me for 8 cycles of chemo, surgery, 4 weeks rads and a year of herceptin. Those old timers on here will remember the hassles I had with my boss! Anyway this time round I'd only been with my new company 3 months when I got my 2nd diagnosis but I qualified straight away for 6 months full pay and 6 half. Although I went back to work part time after 3-4 months, the difference it has made to my mental health has been immense.

So I'm trying to carry on as normal back at work almost full time. But I'm tired, fed up of side effects and recently discovered my ejection fraction is still going down. So I've been started on rampiril and will have another echo later next month. Herceptin is still carrying on for now but will wait and see.

DD dislocated and fractured her arm at gym club 2 weeks ago so ended up with surgery and wires put in. They're due to come out on 20th and we're desperately hoping all is OK as we go on our first holiday in 3 years (thanks cancer!) on 2nd April. We're heading to the national parks in utah for what would be lots of walking, off roading and horse riding but suspect a lot of that will be scuppered now .

I'm also getting worrying signs that I'm heading towards a frozen shoulder again. I had it a few years ago but it's the same side as all my surgery so it's obviously decided it's had enough. I'm now religiously exercising it every day in the hope I can stall things.

That's about it I think! I know I've not caught up with everyone but a big wave to you all. Shout out to mrs good luck with your consultant and mammo appts, I do hate annual review time

Hi I've been lurking a bit but life in the real world has been busy.

My DB had a heart attack and is in intensive care, it's been a week and he hasn't properly come round.it seems enevitable that he has brain damage due to lack of oxygen. He is a chronic alcoholic and it's almost as if we've been waiting for something like this to happen, but still so hard to deal with.

It been my week recovering from chemo so I haven't been able to see him. I've been on lockdown trying to avoid hospital. I did end up in for one night, neutrapenic again but no infection they could detect so I'm back home with more injections and antibiotics just in case.

Leslie hope you are feeling less grotty today.
Chewing oncologist sounds good, although delays frustrating.
Rocket -ARSE hope the radiotherapy blasts it away
Fluffy Norwich is lovely (might be biased)
Waves to everyone - Love and healing thoughts to you all.

minty sorry to hear about about your DD's arm. Poor thing. I hope you manage to enjoy your holiday! And I hope the exercises help with your shoulder too

Halfbaked I'm so sorry to hear about your brother how very difficult for you all. I hope you are able to visit him soon.

I had a grim day yesterday, but seem to be on the mend today.

Sorry haven't posted for awhile.

I have been on tamoxifen for 2 months now and it's been tbh a b&£@ch (excuse my French!). I guess it is going to take awhile for my body to get used to it but the worse has been the anxiety attacks. Suddenly it can seem like the world is going to end NOW. I have never had anxiety or panic attacks before and they are scary. The GP said it should settle but has anyone else had this? Please tell me it gets better as I feel crap at the moment.

Dora