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Cancer support thread 63 for a handhold or advice and anything in between

(996 Posts)
purpleunicorns Mon 25-Jun-18 18:01:48

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much grin

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

WhatWouldLeslieKnopeDo Mon 25-Jun-18 18:59:53

Thanks for the new thread purple smile

I've just copied and pasted from the previous thread as nothing has changed: I'm having chemo (FOLFIRI + cetuximab) for stage IV colorectal cancer (lung mets and lymph nodes). Stage III diagnosis October 2012. Recurrence April 2016. It's incurable, but currently treatable.

Dulcedelecherocks Mon 25-Jun-18 19:11:48

Hey ladies and thanks for new thread purple.

My story- taken to A&E early March and had emergency op to remove stage 3 bowel cancer. So far nothing found anywhere else. Started last round of chemo today.

Adle that is outrageous! I did a quick quote and it came up to £1200 for annual world wide cover. What I would say is have a look at your existing insurance and check if you're covered for everything else apart from cancer. Mine does cover and as I'm just going to get some sun in Europe, I'm not buying any extra insurance this time. I can cancel hotel up to 2 weeks before at no cost and the flights were £700 for the 3 of us. Any medical help can be provided with the European card. So I'm winging it until I find a suitable option.
Tq amazing news.

Afm, I feel utterly shit. Bloody oxi hurt like never before and I was almost in tears. Can barely move arm and hand, and they did it in my right one as the vein was nowhere to be found on the left. Came home and slept for the whole afternoon and now feel sick. But is done and I have to try and be positive. 14 days of pink pills and counting.

Adle you're mad brave to move now! But it's a fresh start so I salute you. I'm planning to move early September if my buyer doesn't screw us over so after I finish mine. Is it your third one this week? Nearly there too.

Hello to everyone else and sorry for not name checking

Mrspotter12 Mon 25-Jun-18 19:30:58

Hi everyone,
I found a dent in my left breast at the end of the Easter holidays while in Spain, saw the doctor on the Monday and was urgently referred. He found a lump in my armpit but not in the breast.

When the consultants met up they downgraded me (under 50, not pregnant and no maternal history) and I was told it was a 9 week wait for an appointment. I asked for a cancellation which I got, so was seen around the two week post referral mark.
BTW breast cancer is in my dads family!

At the appointment I had a mammogram, ultra sound and biopsy. They found a lump in my breast but not my arm pit and I was told it was cancer.

Went back the following week and was told that it was oestrogen and progesterone positive and the sample had been sent to Christie's for Her 2 testing. I was told it was non life threatening.

A week later (clinic is a Wednesday) I was told it was her 2 - so I would be in for a lumpectomy on that Friday!

Three weeks later I went back and was told they'd found another lump and I was scheduled for a single mastectomy the following Thursday.

I had a staging scan on the following Wednesday- all clear and then my left breast was removed on the Thursday - I was in for two nights.

I am now lopsided as my remaining boob is a dd/f and they won't reconstruct until I'm totally clear as I'm a type 1 diabetic and we are more prone to infection 😿
I go back this Wednesday to find out what's next.
What a helluva essay for thirteen weeks!!! It has been a rollercoaster but my advice would be talk to people and ask for help!!!!!

purpleunicorns Mon 25-Jun-18 20:07:30

Dulce if you have a hot water bottle or wheat bag try it on your arm to see if it helps, hope you've got people running around after you so you can take it easy. The worst parts over now, I used to tick off the days in my diary until the end of treatment

Wow Mrsp, written down like that it really has been a whirlwind for you! Fingers crossed you'll be all clear on Wednesday so you can get a new boob. Did they say how long you'll have to wait for the reconstruction if everything's clear?

WhatWouldLeslieKnopeDo Mon 25-Jun-18 21:07:50

Oh Dulce you poor thing. Thank goodness it's over. You don't have to be positive. You'll get through this though and you will feel better flowers I second the hot water bottle/wheat bag. That used to help my oxaliplatin veins. It's such a horrid feeling. Sleep as much as you can to pass the time flowers

Mrspotter fingers crossed for Wednesday smile

noodles44 Mon 25-Jun-18 21:20:29

Brilliant news TQ I did wear myself out at the weekend, but I needed to as have had pretty fretful sleep since my appt, so the sea air did the trick on Sat and I got 12 hours solid sleep under my belt (I cannot remember the last time I did that!)

Leslie glad you got some good sleep and your back has improved.

addled £2.5k for insurance?! Was that for the year or one trip? That is ridiculous. I hope you find a better/cheaper alternative. Apologies as I cannot remember where you are in treatment, have you completed it or are you mid way through for that quote?

purple thanks for starting the new thread. I hope you are feeling well in readiness for the chemo in July.

mrsp Wow - what a whirlwind. Do you mind me asking how having a lumpectomy was? I have discovered a lump under my armpit and was referred to a breast clinic at hospital. I was examined, mammogram & US. Biopsies were taken by the radiologist consultant 2 from the lump (which is a lymph node) and 2 from a tumour in my breast. She said a few times she thought it was something and described why, so I feel like I will get a malignant diagnosis, at the least she said I will have a lumpectomy. She said she was telling me straight now so that I believe her when she says it has all gone. I am now wondering if I am mis remembering what she said, so impatiently waiting for my appt on Thurs for more info.

dulce sorry you are feeling so dreadful. No advice but have some brew & cake from me

TwitterQueen1 Mon 25-Jun-18 21:20:49

Thanks for the shiny new thread Purple

Ovarian cancer, stage 4, dx March 2017. Chemo followed by radical hysterectomy & debulking, followed by more chemo. Was on a trial that was supposed to lead to an additional 12 months chemo of Avastin / Bevacizumab but after NED (no evidence of disease in August, cancer reappeared in November.

Have just finished 6 lots of Caelyx, to which I've responded very well. I've been given a 'holiday' for a few months (unless cancer grows more quickly). It will come back. I will need more chemo.

purpleunicorns Mon 25-Jun-18 21:31:40

TQ how did you find the Avastin / Bevacizumab chemo? I'm having a chemo mix and that's what I'll be having depending on how my kidney function test goes. Did you get neuropathy from it? I'm dreading not being able to drive

TwitterQueen1 Mon 25-Jun-18 21:52:24

Purple my mix was Taxol (aka Paclitaxel), Carboplatin and Bev. Taxol is the 'toxic' one in the mix - the other two have fewer side effects. As part of the trial I actually had weekly (not to be recommended) chemo of Taxol, with the Carbo & Beva every 3 weeks. Beva has fewer side effects than the other two.

Yes I had neuropathy but not enough to limit my everyday activities. I think that if it was bad enough that it impacted your driving they would change the drug. It's tingly pins & needles - not painful. I worked for a lot of the time, drove as normal etc. I lost my hair (which I wasn't particularly bothered about as I have friends who've lost it before & it comes back), plus everyone told me the pixie look suits me (it does grin).

A couple of my toenails went a bit manky - they still are - and this impacted my shoe-wearing! I had to invest in a pair of sheepskin slipper type things which didn't put pressure on my nails. So sexy. Not.

The steroids they give you for the first few days keep you awake half the night (I used to wake up between 3-4am). Nausea is well controlled. I didn't need the additional tablets for that. Sugar was my friend whenever I did feel sicky - which is why I put on all the weight I lost from my op.

Tbh, the worst things were chemo brain - which is real - along with zombie trance. The world goes by in front of your eyes and you watch it pass...

purpleunicorns Mon 25-Jun-18 22:06:12

I think that's the same mix I'm having, good to know you still managed to work through most of it. I've checked and I don't think we'd be entitled to any benefits other than ssp, plus I'm only having it once every 3 weeks so hopefully it will be manageable.

The steroids last time kept me awake all night but I've got sleeping tablets ready for this round

I'm not too bothered about losing my hair (although that may change when it does fall out, I'll probably end up looking like a potato confused) I am however looking forward to not having to shave my legs grin

TwitterQueen1 Mon 25-Jun-18 22:14:35

I worked from home full-time with an understanding and accommodating employer. Not sure I could have coped with an M4 commute each day....

Mrspotter12 Mon 25-Jun-18 22:29:53

Hi guys, it has been a whirlwind but I am eternally grateful I got that cancellation!!!!
Initially the surgeon suggested 6 rounds of chemo but when we pressed for more info he basically told us the oncologist will decide. Not sure when I'll see him (I think the three at clinic are all blokes!)

Mrspotter12 Mon 25-Jun-18 22:32:44

noodles I would rather be honest, the lumpectomy did hurt, took about 2.5 weeks to start feeling better from it. I would advise you to get the pain killers, think about sleeping tablets, and take all the help offered. And if none is offered - ask!!!! 💐💐

chasegirl Mon 25-Jun-18 23:01:55

Hello again. I was called for a routine mammogram at the end of April. They are rolling out mammograms for women age 47 where I live.
Got recalled for investigation and had a biopsy at the beginning of May. They thought it was just calcification. Results then showed dcis so had a lumpectomy. Results of that showed part of the lump was cancer so then had a sentinel lymph node biopsy to stage the cancer. Luckily thus showed no cancer cells in my lymph nodes.

My Dad sadly passed away while waiting for the results.

Just had my appointment to see the oncologist for my radiotherapy come through quicker than I was expecting. Its on Wednesday. Not sure what to expect for that at all.

My boss is coming to see me tomorrow for a formal attendance management meeting as I have had over 35 days off sick angry. Had 6 weeks off.

My sick nite ends on 30th June so I was expecting to be back at work next week.

noodles44 Mon 25-Jun-18 23:04:04

mrsp thanks for that. I did think it probably would be painful afterwards as I can still feel it ache at the biopsy site for my lymph node. The breast biopsy site has not bothered me at all.
I shall load up on pain relief, thanks for the advice.
Thank goodness you got the cancellation, even if it had not been something that warranted immediate attention, 9 weeks would have been an awful long wait. I am 46 with no history of BC In the family. My results appt is 13 days after my biopsies. I was lucky to go to a one stop shop for my appt/mammogram/US & biopsies I think though. I found the lump in my armpit on 2nd June and went to the docs on 5th June initially so my results appt is probably pretty quick compared to some people.

addlebrained Mon 25-Jun-18 23:24:15

I agree dulce that the heat helps and I have had heat pads on during the oxi because it was so cold and painful. I can’t believe you can type after the iv! I can’t see straight for at least 2 days and I am (as I’ve mentioned numerous times) dreading Thursday!

I will try another insurer... I also have to get this house sale through (Not my deadline but these stupid English chains make it impossible to do things at your own pace!) and have about 1000 phone calls and other crap to sort tomorrow as well as oncologist appt and sports day and bloods to squeeze in!

My story is similar to dulce and possibly tayto as I am stage 3 bowel cancer picked up after I wandered into a&e with tummy pain and a lump on the right side. Starting cycle 3 of 4 (oxaliplatin and capecitabine) on Thursday...

purpleunicorns Mon 25-Jun-18 23:31:04

Do they do the lumpectomy while you're awake Mrsp? If they do noodles it might be worth getting some Emla cream to numb it beforehand

Chase if they start being funny with you at work remind them that cancer is classed as a disability and they can't treat you unfairly because of it angry radiotherapy is easier than chemo, I had no side effects at all although you probably will get tired from having to go to the hospital every day

Taytotots Tue 26-Jun-18 00:36:56

Thanks purple for the new thread.
I'm in same boat as Addled and Dulce. Diagnosed with stage 3 bowel cancer at end of Feb after going to a+e with abdo pain. Partial colonectomy and four cycles of Capox - currently on last one with four days left - not that I am counting or anything grin.
Dulce sorry you're suffering after the IV. Hope the heat helps.
Chase hope the meeting is just a rocky box exercise. As Leslie says you are protected if they do get arsey.
Addled how much?! shock. Luckily we have to have private medical cover here and that covers me abroad too. Was going to look for cancellation cover so hoping that isn't too dear.

Dulcedelecherocks Tue 26-Jun-18 01:45:29

Thanks ladies. I did have a heat pad while taking iv and have now tried hot water bottle which has helped.
Have steroid insomnia sad((
Addle and tayto whereabouts in the world are you?
I met a lady at the waiting room who has exactly the same as us but her treatment is very different and I wonder why. She's had radio and having 3 courses of oxi plus something else (not xelox) then surgery and then 3 more courses at the end. Is it because we had emergency surgery? She was told her tumour was too big to operate but I thought mine was fairly big as well. Anyway I'm just curious as to why it differs.

Mrspotter12 Tue 26-Jun-18 07:42:05

purple it was s general and I went home that night. But when I was on the ward following the mastectomy a lumpectomy lady came in but she was older and fainted so she had to stay over.

chasegirl Tue 26-Jun-18 07:46:33

Thank you Tayto and Purple. I think it's just 1 of those things that has to be done but the letter is awful-stating that I need to be aware the business may not be able to support my sickness confused.

Gonegrey31 Tue 26-Jun-18 09:02:30

Hello everyone,
Just posting to mention an article in today's Times newspaper about travel insurance for cancer patients. Journalists have done a price comparison trawl, and found a company called "Insurancewith" - a specialist travel insurer - offers the most competitive rates.

Wishing each and every one of you all the very best - I am in awe of your collective resilience, as well as your kindness and compassion for each other.

purpleunicorns Tue 26-Jun-18 09:09:45

Thankyou Gonegrey, hopefully that will help Addle and anyone else looking for holidays.

Even though we've never met and don't even have any idea of what each other looks like, I like to think we genuinely care about each other. I couldn't have got through my diagnosis without this bunch smile

WhatWouldLeslieKnopeDo Tue 26-Jun-18 09:45:10

Dulce I think a lot depends on the size/position of tumour. It would have to be very big or awkward to be inoperable, so then they use chemo to shrink it to make it easier to remove, then more after to catch any stray cells.

I hope you managed to get some sleep flowers

chasegirl good luck with your boss flowers not what you need right now!

Waving to everyone else

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