CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Thanks vampire, it’s on my shopping list along with nail oil to hopefully prevent my nails falling out and a kindle to give me something to do while having chemo

Biscetti - tonight’s your night for painting the town red. I hope you’re properly over last week’s nausea/heartburn and can enjoy it. Have you decided on a dress?

Hello all May I join?

I’m Miri, I’m 32 now. In May 2014 I was diagnosed with a high-grade undifferentiated uterine sarcoma (stage IIA). I was given a poor prognosis (less than 50% chance of surviving for 2 years). I had an abdominal hysterectomy - they removed uterus, cervix, and Fallopian tubes but left the ovaries because they appeared disease-free and they wanted to prevent premature menopause if they could. I then had 4 cycles of adjuvant chemotherapy (doxorubicin and ifosfamide). Finished treatment with no evidence of disease in my body and have been on regular follow up ever since - initially scans every 6 weeks, them every 8, then every 12, and then in October 2016 we moved down to 6-monthly.

In September 2017 a routine MRI revealed what looked like a small tumour on my right ovary. A PET-CT scan confirmed a malignant growth. On 2 November I had both ovaries removed - surgeon wanted to try keyhole, but it turned out that the tumour had adhered to the pelvic sidewall and was very difficult to remove so they converted to full open surgery (reopening my hysterectomy incision).

I’m now 2 weeks post surgery to treat my relapse. Still feeling sore and weak, and currently being seen by the practice nurse every 2 days to manage my incision which isn’t healing. I’m seeing my oncologist tomorrow and the surgeon next week. No idea what the next steps are - oncologist was waiting for histology results before making any decisions. Hoping tomorrow will bring some answers

To complicate matters, after I crossed the 2-year rubicon, my darling wife and I decided to try for a baby (we had always planned to have a child; my original diagnosis delayed us). So we spent over a year having fertility treatment with donor sperm. IVF worked for us; my relapse was diagnosed 2 days after DW’s 12-week scan. She’s now 19 weeks.

So, here I am. Our first and much-wanted child is on the way, and we have no idea what the future holds, in either the short- or the long-term just now. Sorry for the long post. for all of you. This is shit, shit, shit.

Hi royal I'm not too bad thanks apart from a constant headache since the zoladex implant on Friday. I can't take ibuprofen any more as I'm now on blood pressure tablets too (thanks again anastrazole) and paracetamol doesn't touch it. A friend has told me about some strips that you stick on your forehead which are supposed to be good so I'm going to research those and have a walk into town to get some if they look ok. I still haven't had any hot flushes or sweats but I'm sure they'll arrive. how are you?

Greyboot no wise words, just warm thoughts and hope that today will not too be traumatic. I had to look up leiomyosarcoma - I have not heard of this before. Keeping everything crossed for you.

Purple my Kindle Fire is the 1st thing I put in my chemo bag! It's absolutely brilliant.

Leslie I hope you're feeling a bit better this morning and that they don't stick too many needles into you!

Waving to everyone else!

Hi miri

So sad you’re here, but welcome.

Waiting for results is really tough. I hope they have proper answers for you tomorrow, and an actual plan for what can be done about it

Hi everyone, I was hoping you might have some collective words of wisdom for me.

I’ve got a referral to the breast unit this afternoon. Basically I woke up one morning and my right breast had swollen overnight to almost twice the size of the left, with a really prominent palpable vein. Went to the doctor who found a firm lump on examination and referred me.

I’m a real mixed bag of emotions about it. Part of me is resigned to having breast cancer (my DM was diagnosed at 49 - although I’m only 30 now) so quite calm, another part is absolutely terrified and another is telling me that I’m being stupid and pathetic for wasting the clinic’s time as I just got my period and I should cancel the appointment (even though DP would never let me).

Any kind of advice appreciated! So much love to all of you on here who are going through some real crap and dealing with it like troopers

Hi screenburn, I haven't heard of anyone presenting quite like that before but your gp is absolutely right to send you along. You're not wasting anyone's time and hopefully it will be something other than cancer. Do you know what to expect later? Usually it's a physical examination then mammogram and ultrasound. If everything looks clear I think you'll find that out by the end of the afternoon. If they need to take a biopsy then you'll be given a date to go back for the results the following week. If they take a biopsy it doesn't mean it's cancer, they're just checking thoroughly.

It's not the best way to spend the afternoon but it's usually all very efficient and the staff are kind. Is someone going to go along with you?

Thanks for the reply Mrs, that’s really helpful. I’ve been trying to avoid google so had no idea what to expect! From what you’ve said it sounds really well organised - can’t believe all that gets done in one afternoon.

DP is going to go with me thankfully, I think I’d just freeze up on my own.

Hi Greyboot

I don’t have any words of wisdom - apart from to say hello to a fellow gynae sarcoma patient, and to say I have everything crossed for you.

My understanding is that brain mets would be incredibly rare for sarcoma - the cancers known to cross the blood/brain barrier are breast, bladder, lung, kidney, colon, and melanoma I think. So all I can say is that I hope the laws of probability are on your side Hope you aren’t going alone.

Hi Miri, I’m 34 and Just been diagnosed with 2b cervical cancer so it looks like I’ll be getting a hysterectomy after some chemo. I don’t have much advice as I’m still pretty new to this but treatment gets better all the time so it will be a lot better than when it was back in 2014. Keeping everything crossed that tomorrow goes as well as it can

And congratulations on your baby! Although I don’t envy the sleepless nights. Mines 15 now and I still remember the feeling of walking round like a zombie

Just checking in. Daughter Having such a rough time in hospital. Chemo very tough on her other illness. Conflicting advice from nurses and different doctors driving me crazy! Hopefully today after last day of full chemotherapy yesterday she will just sleep. She has been almost comatose for 4 days! And this is just cycle 1. We now know that we can't get specialist support for meds via PORT in community ( she can't take oral meds at all so even drugs normally given by mouth have to go through PORT) so she will be inpatient for 14 days each 21 day cycle plus extremely likely she will need transfusions and IV antibiotics ( even people who can take oral need these) at several points in the treatment so may end up being in for much longer. It makes it sound such fun. And isn't being in hospital expensive?! We are spending a fortune on food for me and husband as we can't bring enough stuff in , we live two hours away and relatives aren't allowed to heat food up,on Ward so I living on m and s salads and Burger King. Her DLA for her normal illness will stop after twenty eight days as inpatient which because of stays previously will be in a couple of weeks. Husband has to go back to work next week as we need the money. I wish I could,feel,positive. Sorry, not a happy post. Love to all

screenburn I have had 3 LO with breast cancer. Obviously it's scary. I am so sorry for your diagnosis. All I can say is that new treatments are being developed all the time. Look at Second Hope which a friend was involved in. X

Hi everyone

Hi Greyboot

I've delurked to tell Greyboot that my husband was diagnosed with leiomyosarcoma (20 years ago). And following a seizure (some 17 or so years later) he was also diagnosed with an anomaly on his brain called a 'cavernoma'. A cavernoma is a little blob of disorganised blood vessels like a raspberry (yeah, they're described as that!). There has been some research to show that there is a link between the two conditions due to a faulty gene.

Cavernomas can certainly cause numbness especially if they bleed a little bit, but mostly they just sit there in your brain not doing very much, and they turn up in tests as an incidental finding.

Of course I'm not saying that's what you have, but there is a good chance that's its just a mildly misbehaving brain raspberry. And equally there's a chance that it's absolutely nothing at all. Everything is crossed for you.

As for me... I've been lurking for a while since having El Norko whipped off in June due to IDC. Had radiotherapy, no chemo, on Zoladex, have just been taken off Letrazole due to shocking migraines, and will be starting Anastrazole in December.

There's nuggets of wisdom and hope in these threads that have kept me sane. So thank you everyone from the bottom of my heart.

Hello everyone.

Leslie I'm sorry to hear you're in hospital again. Hope you have managed to eat something.

Mamma Fingers crossed for DH.

purple How was the biopsy today? Hope you're not too sore.

Twitter Good luck getting the shoe on tomorrow.

Greyboot Did the MRI go ok?

Miri Congratulations on your impending new born. How exciting for you both. Good luck for tomorrow.

Screenburn I hope the swelling turns out to be hormonal and nothing nasty.

carbuckety It sounds really gruelling for you all, especially DD. Sending you hugs.

to everyone.

(That turned into a mega post )

I GOT MY SHOE ON AND WALKED INTO TOWN !!! Yay go me . It's little victories like this that matter.... It's a tiny little 'fuck you' to the whole body filleting, the 18 weekly lots of chemo, all the biopsies, stomach draining, lung draining and every other sodding thing.

It's going to take a whole lot more 'fuck you's' yet though. Next step is to improve on fitness.

I think it must have been an infection. I stuck my foot in the washbasin today (I impressed myself with my ability to do this without falling over btw, I am not young nor especially flexible) and when I pressed the nail afterwards lots of water oozed out... gross.

It's going to take a whole lot more 'fuck you's' yet though. Next step is to improve on fitness.

HOw are you doing Leslie? I hope you're not feeling too horrid. Hello to you Miri sorry you are here but you're in a good place for support. Purple and greyboot how are you doing?

Thankyou for all your kind words everyone. I’m afraid I’m not good at seeing who has said what on my phone, but do need to say special thanks to Miri (and congratulations!) and Tess for delurking for me!
It took 3 tries before I was calm enough to be scanned.
I’m not a panicker normally! Last time I panicked, but was ok on the second go,but today!!
Even though I close my eyes, it’s having the face shield thingy that I hate.
Still it’s done now

I went to hospital fully expecting to have a loads of needles shoved in me but when they did a scan to see which lymph node was going to be the best to biopsy they decided they all looked pretty normal and there didn’t seem to be any issues with them. That’s the first appointment I’ve had where I haven’t come out with more bad news. I almost cried with relief

Next appointment on Monday to discuss chemo treatment

Evening all

It's been busy here today!

Greyboot well done on getting through the scan. The face shield sounds unpleasant. Do you have any idea when you'll get the results? Fingers firmly crossed for you

Welcome Miri. Congratulations on your wife's pregnancy, though I'm sorry cancer is interfering with such a special time. LittleGreyCat was diagnosed while pregnant. There was another poster too, but she hasn't posted for quite a while. Good luck at tomorrow's appointment

Twitter hooray for your shoe! Excellent news. Have you been doing salt water foot baths? Might help with potential infection.

StandBy it's lovely when a lurker de-lurks :) nice to meet you!

carbuckety sorry things are so tough. And very frustrating about the port. Are you allowed to boil a kettle at the hospital? If so you could take some of those flavoured couscous/rice/pasta sachets.

Screenbyrn how did you get on?

mrsrhod you poor thing. My sister gets migraines and uses those strips sometimes, or a rub on stick thing. I think it might be called 4head, but I may have imagined that!

Waving to everyone. I'll leave it there as I'm typing one handed (temperamental cannula) and it's hard work. I haven't thrown up since lunchtime :) I'm managing sips of drink but not much so having fluids too.

Cross-posted purple that's great news :)

Busy day for everyone! Lots of love to you all.
Leslie sorry we didn't get to be virtual chemo buds today. I did get my treatment as my rash is a bit better, so that was a relief. They've decided to give me cold boots and cold mittens, to complement my cold cap. I look like the ugly offspring of a jockey and crab (as well as frozen); if you need a laugh in hospital, I will pm you the photo. I'm sorry you're back in; I remember post-op adhesions popping - will yours do that? Wishing you a speedy resolution of the obstruction x
Twitter - well done on your victory walk! Have you been referred to chiropody to help with your toes? Mine are less scaly so hurrah to winning toe wars x
Purple - awesome news. So pleased for you.

Miri - such lovely news for you and your dw, followed by such confusing, shitty news. I hope the joy of the former keeps you strong and that tomorrow goes well
carbuckety might seem a bit random but do you have any mates who'd lend you a camper van? You can plug in a microwave, use the hob on gas, boil kettles etc and even have a quick, comfy kip if you need a break? Even a very small one with a kitchen (like a Bongo or VW camper) would be like a little home from home for you? Continued courage and strength to you and your daughter.
Good luck to screenburn and greyboot and hi to everyone else.

@carbuckety the gov. website says dla doesnt stop for a childs admission into hospital

i also thought the 28 day rule was for consecutive days - its states a stay of 28 days ...not adding up the days over a few months ??

Thanks for the kind words everyone.

Just back from seeing the top brass Prof. The pathology report from the surgery was encouraging - the only diseased tissue was from the right ovary and right side of the pelvis, and the left was clear. So it was a very localised recurrence, and they think the surgeons removed it all. I had chemotherapy last time but that isn’t on the cards this time, but they’re considering some very targeted radiotherapy to the right side of my pelvis to mop up any stray cells. The Prof is going to call a colleague of his who is a specialist in gynae radiotherapy and ask her opinion. Hopefully I will know in the next couple of weeks whether that is going ahead. Am nervous about the idea of radiotherapy - I’ve never had it, and am trying not to read about side effects etc.

I’m pleased that chemo is off the table - my bloody hair has only just grown back after the last lot

Finger crossed for you Miri

Leslie I hope you are home

That sounds promising Miri I shall keep my fingers firmly crossed from news from the expert

Halfbaked how are you?

nicky I can't get to grips with Youtube at the mo, but did you ever watch Black Books? You've made me think of Manny and his heat be gone booties I'm glad your treatment went ahead and that the rash has improved. My mind is boggling at thought of adhesions popping - what happens? Is it audible?! Nobody has mentioned that but I don't know.

My pain came back and I threw up lots again this morning so alas not going home for a few days. They did an abdominal CT and no sign of any physical blockages. They think my gut has slowed down in protest. It's done this before so not a huge surprise. I was referred to the palliative care team who are fantastic and have sorted much better pain relief and antisickness meds. Also had a less-than-welcome visit from the chaplain who interrupted my nap after several hours of constant retching and wouldn't leave

I hope everyone is having a fun Friday night...