Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

Hello everyone and welcome marsbars

TQ How is your DD? Hope she's feeling better

Mysillydog I am taking medication for my post op nerve pain. I tried amitriptyline which was great for helping me sleep but did little for the pain. I am now taking pregabalin. It's only been a couple of days so don't know if it's working yet.

Sending good vibes to all those waiting for scan results/tests

I know I'm repeating myself but this really is such a lovely, supportive thread. Thank you everyone for your kindness and warm welcome; I'm really very touched.

Those LGFB workshops sound really wonderful, what a fabulous idea. I hope you have a lovely time purpleunicorns you'll have to let us know how it goes

Mysillydog sorry the pain is getting worse. I hope that's only temporary and that it'll improve soon are you on any medication for the pain? Like wombat I didn't find amitriptyline effective my nerve pain, but gabapentin really helped.

MarsBars I'm glad you think so. We try our best! :)

Waving to everyone else

Thanks Marsbars, if I get there early they'll even paint my nails. Shame I'll have to take it off before I go to work the next day Good luck for your tests, the waiting is definitely the worst part of it as you end up imagining all the worst case scenarios. Hopefully you won't need to be with us for too long

Just popping on to say hello, & welcome (and commiserations) to our newbies.

My biopsy on Friday has left me really exhausted. I'm in constant low-grade pain.

I think they had to go down a good inch to remove the node, so I suppose it's not surprising really.

However, my spirits are ok, considering.

furryface I'll be thinking about you on Wednesday.

Ttfn.

Hello - this thread has moved so fast I haven't caught up, but thought I'd post before I get even further behind
Had my first zoladex implant last week - nurse was lovely, but again aghast at my experience with the registrar (she accidentally prescribed a triple dose and luckily the pharmacist spotted the error)
Only side effect - apart from my usual allergy to plasters which I forgot - was that the hot flushes have got worse again. I am very weary of them, and it now feels like I have to do the whole menopause thing again [cross], I am having a mirror of your experience so far mrsrhod and it's no fun. Took DD shopping on Saturday and was the only person in a Tshirt .....
Best wishes to all awaiting results and tests, leslie you are a complete star keeping the threads running and remembering everyone.
mysilly thinking of you and hoping that the neuropathy and pain ease soon - or they can give you something to help.

miles take loads of painkillers. There are no prizes for putting up with pain. I’m limited on which painkillers I can have (no aspirin or NSAIDS), but can have full normal OTC doses of paracetamol of the blissful paracetamol/codeine (latter needed for several days after bone marrow biopsy - though I had only 24 hours of ‘don’t get this wet at all’)

Do you know what’s OK for you to have?

My chemo (first two weeks) was by tablet - under strict instructions to take with food to minimise risk of chucking it all up. No question of fasting on that kind of regime. The drug I’m on now is mainly for CML, but is sometimes used for some types of lymphoma. I can’t have grapefruit, valencia oranges (mysteriously other oranges are OK) or pomegranates. So if you have a passion for any of those, bows the time to indulge it just in case!

First day back at work today. Felt ridiculously emotional on the commute in, lots of head tilts and pursed lips from colleagues. Got a decent amount of hugs! Did anyone else feel really lacking in confidence when they went back?

for Cookies. Well done. Hopefully that's the worst bit over. My contract finished while I was signed off sick so I never went back. But I returned to uni a few months later and it took me a while to get my confidence back. Partly chemo brain and partly having been out of the loop for a while, I think.

pepper I'm glad the first injection went OK, but how frustrating about the hot flushes

Miles I hope the pain wears off soon

I hope everyone is alright this evening :)

waves to all
I was lurking sheepishly, having posted on the last thread, where everyone was amazingly supportive.

Just wanted to say to MarsBars that I am in a very similar boat - 4 month history of odd but not alarming gynae/digestive issues, wee trip to the GP, called back straight away due to elevated CA125. I have my ultrasound scan on Sunday, and am alternating between positive thinking, and cold, sweaty panic. Oddly, I am feeling better as the scan date approaches, as this should be the first step on the path to getting sorted, whatever the cause might be.

Good luck to all those waiting for results .

Turn - I think you make a really good point, there's relief in finding out the cause of a problem. Even if you don't like the answer. Really hope the scan goes well.

Thanks Leslie, yep day one done!! It's lovely to be back in familiar surroundings, but trying to catch up with where the team is at is tough. I'm definitely doing a lot of overcompensating! I love being part of my team (we have a v fun title) but I feel out of the loop.

Hi pepper I'm pleased to hear you got the zoladex injection from a nurse, not diy. Yes I have had more hot flushes which had pretty much stopped on the anastrazole but to be honest they haven't been too bad, better than I feared. I've had 4 jabs now and the thing I am troubled with is painful joints again, they've come back in the last month or so and I'm feeling very uncomfortable. My appt with the oncologist has finally come round and I see him later today. I'm going to ask if he will write to bupa in words of one syllable to ask them to perform the surgery, ovaries and tubes. It's my last chance to get this done privately, I can't get a date from the NHS, consultants secretary is absolutely not committing to even a likely month.

iVampire thank you:) . I am taking loads of painkillers (luckily I can have them all atm), but it's just such a mobile area, it's hard to stop the stitches from tugging. I've actually taken the dressing off a day early, as it was giving me humongous blisters, and the RELIEF.
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LeslieKnope* are you doing a PhD? Are you going to be Dr Leslie Knope?
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Cookiesandwine* I'm dreading telling people. At least it's over with!
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Rhodgilbert* hope they give you a date for your surgery soon.

My friend came over today, and we had a really good old chat about it. It felt good - though also hard - to talk about it all with a sympathetic soul.

Hope everyone's having a good day!

mrsrhod good luck with the oncologist today maybe we all need to turn up with pitchforks at the BUPA office...

Miles sadly no, not doing a PhD. I was on a placement year when I was diagnosed so had to go back and finish my degree. I'm glad you had a good chat with your friend :) hopefully the pain will improve soon

Waving to everyone

My oncologist was incredulous that bupa are not able to understand letters written by consultants and yet feel confident enough to reject treatment based on a lack of understanding and believing. He's going to write back for me but I'm not getting my hopes up. It was a weird appt, I thought he was getting annoyed at me but thankfully I realised he was pissed off with the insurance company. If this doesn't work I'll remain on the NHS list. I really wanted to get this done before dd2 comes home from university for Easter. She will be revising for her finals and completing her dissertation. She deserves to do this without the slightest worry for me, her A levels were during my initial year of treatment and all the emotional upheaval, I don't want that again for her.

Leslie and Furry good luck for tomorrow. I hope the results are positive.
MrsRhod you've had such a difficult time... I hate too that my DDs are having to worry about this whilst they've been doing A levels, and now 1st year and final year. They shouldn't have to be thinking about their parents' OC and leukemia.

DD's latest test results seem to be normal although she's still suffering with cough / chest and tiredness. Home this week though so she can rest properly.

It is 3 weeks today since my surgery - has anyone else waited this long for pathology results?

Hi ggirl Do you have an appointment to return post op?

My op was on 3rd Jan and I haven't seen the surgeon or chest clinic but I rang my Specialist nurse and she told me my pathology results. I'm just waiting to be told 'officially'

Hi all, I’ve been pointed in your direction for some support. I’m a 29 year old mother of two who had just been referred to the breast clinic. I first realised I had a “lumpy breast” at the end of last summer. The GP felt it was glandular and nothing to worry about. I’ve had a cracked nipple which healed and then cracked again in the same place 6 months later (last weekend). I’ve been back to the GP a few weeks ago and again today and have finally been referred. I’m petrified at the thought of what could lie ahead and even looking at my 2 beautiful little girls is making me well up. I’m hoping for the best but really finding it hard to stay positive right now. I know you’ve all been where I am so I’m hoping you can tell me how you managed to cope with the not knowing. Thanks.

Hello everyone I’m sorry we are all on this board. I’m currently waiting for biopsy results on an odd discoloured patch on my outer labia. I suspect it will come as vin, so potentially pre cancerous cells similar to cervical cells. I have lots of little brown patches on my labia, though, so am shitting myself I’ll hzve to have them all removed! Hope others are doing ok.

ggirl I didn't get my pathology results until my six week post op check. I assume they were available before that though. I hope you hear soon

mrsrhod I'm glad he was angry on your behalf. Hopefully he will write a strongly worded letter and get it all sorted out!

TQ good that her results were OK. I'm sure some TLC at home will do her the world of good :) and probably nice for you to have her home too!

wombat how are you doing?

Happyland88 welcome :) hopefully you won't need to stay here long! There's a few others in a similar boat at the moment so if you read through the last few days' posts you might glean a few tips. But tbh it's just a case of grinning and bearing it somehow. Just do whatever you need to do (within reason) to get through it.

Haggisfish sorry to hear that. Do you know when you'll get the results?

Furry good luck tomorrow

Thank you TQ I'm feeling quite blasé about it at the moment

I went to choir this evening and I didn't need my inhaler at all (until I went outside into the cold air at the end), didn't have any coughing fits and managed lots of long, high notes it's reassuring that it's improving as I was starting to wonder if it was cancer rather than asthma

ggirl I became very friendly with my consultant’s secretary during my wait for results! The lab was completely backed up so they were calling every day for me and moaning! If you’re concerned don’t worry about calling them.

thanks cookies and leslie - sometimes I manage to forget about waiting for the results and then I get a well meaning text from someone asking about them .

haggis and happyland- sorry you're finding yourself here but it is such a supportive thread I'm sure someone who has similar stories to you will be along to give advice. Waiting is just shit , I find distraction the best way to cope , keeping as busy as I'm able to be. Hope you get some reassurance soon. x

ggirl It's still early days in your recovery, don't be too harsh on yourself and do take it easy. As Leslie said there is a lot of healing to be done in your body first. I have a feeling the staining for Neuroendocrine does take a little longer, I may have dreamt it though!

Sorry more of you have had to join us but a hello and welcome from me too.

I hope those of you awaiting results are bearing up will waiting.

Everyone else I hope you are keeping as well as you can and that your treatment isn't too harsh on you.

Thanks for the warm welcome everyone. I’ve RTFT to get to know you all a little. Sending positive vibes to everyone