Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

@Fuckmyliferightnow crikey - weren't you the lucky one! Ghastly business. I've got new respect for the hated injections though - when they work. My docetaxel was also cut to save my poor feet and they are a lot happier.

I didn't realise other people's chemos were so short. I did notice that no-one stays longer than me on the day - now I see why. It's OK - just a bit boring but I take loads of stuff.

@backformore don't let our tales of woe make you anxious. Chemo is not quite the same for any 2 people and chances are your day will be boring and just a bit unwell maybe for a few days. But if you are unlucky - drs have seen it all before and will deal with it.

Let the nurses know you are anxious about IVs (I always tell people) so they e.g. don't give you the new student nurse and get someone who's good at it. Mentally, I practice dissociating the process from the pain. We've all had kids right, so we know what real pain is. IV pain is really not that huge - I mean yes, it hurts a bit - but it's not up there with labour. So I try to first get a grip on the pain as just a bodily sensation that will not go past a certain degree - so the thing that's difficult is then the process (which does make my brain melt) but that process itself does not take all that long - it doesn't go on and on - once it's done you can put it aside (and if you are a short chemo you may not have to drag your stuff to the loo!).

@AlbertCampion I think low moods are to be expected but I also think they can be drug related. I swing wildly - I get suicidal which is quite bizarre in the circumstances. I also get a bit manic. Dh is training for sainthood

OOOOh @InOtterNews sending good-results vibes.

@backformore I feel exactly the same, this doesn't feel like it is happening to me. I am afraid of the same things as you and I feel very tearful most of the time. My have two main fears, vomiting and being carted off to hospital with an infection. It is hard isn't it? xxx

@Lizdeflores thank you for those timings, that is very helpful to know. Part of the problem for me is knowing what to expect so I have a better idea now. I spoke to Macmillan this morning and she asked me how I was feeling about Christmas and I said 'really flat' and then I felt like I was being such a misery and felt guilty about that. I have a grown up DD who has her own house so no little ones at home. It must be hard for those with small children.

@Acinonyx2 that is good advice re the pain. Whereabouts is the pain with chemo when it is being administered? Is it in the vein itself?

@InOtterNews hoping your results are good.

My bowel problems rumble on, if you'll all pardon the pun. I have gone from total blockage requiring an enema in hospital a week ago to completely the other way now. I have a Tesco shop coming tomorrow so will add on a couple more packs of Tena pants as I can see they will be needed .

@FizzyOrange there is no pain with the chemo itself (you could think of it like the after cut hair drying at the hair dressers) - I was just referring to actually putting the IV in. (I have some pain but only for a bit with the drug I'm allergic to).

Have you got any loperamide for diarrhea? I don't take it often as I'm more afraid of constipation! I have a kind of rule of 3 - after the third loose watery go in half a day I take one - but only if it's watery.

Morning all. I hope the white cells are building nicely for @Bloodybridget and @Fuckmyliferightnow
Those filgrastim injections are the devils work but they kept my white cells up nicely.
My first FEC chemo was given in a local community hospital using big syringes and the nurse basically whooshed everything in really fast. The whole thing took about 50 minutes and left me a bit shell shocked. The second time was back in the chemotherapy ward (which keeps relocating due to Covid). The nurse was great and took lots of care and did it all with infusions that took about 3 hours in all but I had far less side effects. He did a bit of a prune mouth when I told him about my first experience
I had such an exciting morning today. I dressed up smart in tunic tights and boots and drove myself over to the testing station for my pre op swab. First time behind the wheel in months! And the last probably too.

@FizzyOrange my chemo was pacitaxol and carboplatin one took 3 hours and the other 1.30 I was in the unit for 6 hours. The actual chemo caused me no pain the only thing I've hated is the cannulation, I do regret not having a picc. Apart from that I found chemo quite relaxing, comfy chair,bit of a doze and listening to music/podcasts. I did always pack some woolly socks as my feet got cold. My top tip is wear elasticated waists that you can yank down one handed when you need the loo. I know we all react to chemo differently but I have never felt nauseous or vomited. When I got the list of possible side effects I thought I would get them all but I've been pleasantly surprised

@Acinonyx2 Oh I see, thank you. I do have some imodium in the medicine box but I am also terrified of constipation after my dynorod enema last week so I am cautious! The rule of 3 sounds sensible though.

@Lizdeflores I will be on the same chemo drugs as you so I do feel encouraged by your experience. I will definitely wear elasticated trousers, that is a good tip. At what point did you lose your hair? This isn't a huge deal for me as my hair is not that nice but just so I am prepared.

@TopOfTheCliff it is strange to appreciate something as simple as a short drive isn't it? When I came out of hospital last week, my daughter was worried I was cold as we were waiting for the taxi, but it was so nice just to feel some (cold) breeze on my skin having been shut inside for nearly a week.

@Acinonyx2 my feet have improved bit when they were bad, they were bad!

@TopOfTheCliff aren't they just? Only they've not kept my neutrophils up, but I am always on the low side. My body doesn't make many naturally.
I have a feeling they won't be going back up on their own anytime soon.

Hi all,
Sounds like lots of you are starting treatment soon? I hope any side effects are not too troublesome and short lasting x
No news from hippiechick?
Well, I heard today that my appt at Sheffield is scheduled for 6th January.
The secretary was very helpful when I explained we lived some distance away and has given me a later appt slot.
I was also initially pleased that ds2 would be back at school but now the media are reporting a staggered return for pupils so...
He's a really anxious child so I was hoping to go to the appt without him knowing.
I've just told ds1 I need further tests etc
It'll be a day of tests (again) but I'm not googling in case it involves needles and eyeballs 😬
I'm going to sign off til after Xmas and try and foster some festive spirit 🙄😁
Thinking of you all especially fizzy, bridget, starmer, albert sieze liz top acionyx
Much love xxxxxxxxx

One thing I have done is ask for a copy of the referral letter...

Hi @FizzyOrange My hair started falling out two weeks after the first treatment. I had long thick hair so I went for the chop first and then a closer shave when I got fed up with fishing hair out of the plughole.
Happy Christmas to you @Shrillharridan we all deserve a good one xxx

@Shrillharridan Happy Xmas and hope the coming tests give you much needed answers.

[quote Trumpton]**@Hippiechick162* @Skap* and all you fabulous people.
Hello !
Long time no speak .Hippie, I hope your bone scan gives you results we all hope for .
I spoke to Wythenshawe a few weeks ago and told them in view of time span I would not be going ahead with DIEP. It’s been too long ( 8 months ) for me to consider such a big operation that is now purely plastics .
I have spoken to team here and have had a video consultation with psychologist so will have the skin saver implant taken out and a prophylactic bi- lateral mastectomy ASAP on island .
Huge sense of relief as it will also lessen ( but not remove completely) the chance of the HER2+ cancer returning .
I see the breast team here on Monday and hope for early January .
I have my last Herceptin on 18th December so should be good for my birthday ( Christmas Day ! )
Hoping to get nice candles for all the wonderful oncology staff .
I send huge good wishes and vibes to you all . This thread has been wonderful in a scary world .[/quote]
Well here I am at the end of my treatment .
My last visit to the oncology unit that’s been such a huge part of my life for the last 12 months .
Final Herceptin today and I have a date of 28th January for the removal of the skin expander from the mastectomy side and a mastectomy of the other breast .
It’s the best possible result for me and I can wait for the removal of the skin expander that has never been comfortable . Happy to be flat and fabulous.
To all of you who have been on this thread with me thank you so much for the handholding in the dark hours and the love shared.
I wish you all the very best .
Over and out of the best club in the world that nobody wants to join .
Xx

Hello, sending love to everyone. Just spoke to GP, who is finally doing the referral my original consultant asked him to do two weeks ago. Back to being very tearful and scared. Kids off school now, which brings its own challenges

Having last chemo next week. Inoperable ovarian cancer with very large tumours. Have been very stressed because every time I get a copy of the letters sent to my GP about treatment results, the size of the tumours varies, in one letter they are one size ,say for March scan, and the next letter they are different size also referring back to March scan.
Ive written to the Consultant asking for clarification but no reply and still waiting for another appointment. If measurements are correct tumour have grown 3 times the size in a couple of months, is that even possible ?
The past year has been totally wasted, what with having to cancel all my "bucket" plans due to Covid, makes me wonder if its worth carrying on at all .

@thereisonlyoneofme what an awful time for you I hope you can get the answers you need. This thread is always here and a safe space for you. McMillan and the Samaritans are also available 24hrs xx

Awww hey @Trumpton Hope you're well for your birthday! The DIEP is a big op and the recovery after is rubbish. Keep us posted on your new plan.
My bone scan came back no spread but rapid degeneration. Just had consultation because treatment was not working given stark reality that if it stays as is 60% die within 5 years! Cheers for that. So, I start 2nd round of treatment 6th Jan exactly 1 year after diagnosis...clearly not my day. However the odds of survival increase to 2 in 10 die over 15 years.
@thereisonlyoneofme it's hard to see past the darkness sometimes remember we are on here if you ever need to just talk, rant, cry or try to find a positive. My husband bought me a sign that says even on the darkest night you can always find one star. It reminds me to find even the smallest speck of positivity (hard a lot of the time and damn near impossible at others but I try). Here for you if you need it xxx

Hi, me again, I've moved and finally got internet.
I go in for my operation on Christmas Eve, I should be home Christmas Day.

That gives me two deadlines: 21st is the day if the Covid test and we are all self-isolating. Then 24th is the end of the time when I can do too much to sort out the house.
And I'm trying to get things organised enough that we can eat through self isolation and Christmas.

@Hippiechick162 sorry to hear about the bone scan. I'm right at the start of this whole process with likely stage 2 BC and something suspicious on one femur (so I get to go in for yet another MRI tomorrow before starting treatment on Monday - ugh). I think they want to treat the leg with radiation. Have you had chemo as well as rad?

@Tean791 I'm with you being tearful and scared. Desperate for the next year to be over. Failing that, desperate for this phase to be over. I know what you mean about the kids being home bringing challenges. For one thing, I can't cry all the time around my 8 year-old... :(

@Trumpton, congratulations! Your post gives me hope. How was the Herceptin for you?

@Lizdeflores good advice re getting the chop first - I've been wondering about this. Might have to ask DH to help as we're still in lockdown here.

I've gone ahead and ordered two bamboo hats/wraps. I love the fact that they seem to have a little volume to them, so they don't look like "cancer hats", if that makes sense?

@FizzyOrange, I'm here with you with the fear. I dread infections, too. I've convinced myself not to fear vomiting - it will just be like morning sickness if it happens (right?!). It's more the medical procedures that stress me out. Needles and drips and all the rest. It's 90% in my head, I know. But it colours everything.

@Acinonyx2 thank you so much for the reassurance about chemo. A friend who's been through this tells me to think of it as a spa day - relax and be cozy and tune out to some music or Netflix. I'm trying my best to be positive. I just wish it was called something else. "Cancer" and "chemo" are such loaded trigger words. I need to try to frame it somehow ("bad cells" and "medicine", maybe)

@InOtterNews thank you for that video link! She makes it look so easy. I'm going to check out more of her stuff. I've tried Calm, too - it's one of the things I have on standby on my phone for Monday (along with tv comedies and a playlist my daughter made).

Took my 2 year-old skating for the first time today (with help from my dad), and it was like life was normal again for a few hours. Others who have been here: please tell me that these moments become more frequent once I'm into the swing of things with treatment?

What have they said they think is the trouble with your femur, @backformore?

Not sure, @BitOfFun - the main concern is my boob and two lymphs, but they said the bone scan showed something which could just be deterioration or a tiny fracture on my femur, or it could be a static deposit (is that right? Something like that). Oncologist said the plan would be to proceed with chemo as planned and work in some radiation to the femur during or after. They just had their surgeon/radiologist/onc meeting and I’ve been sent for another MRI, so I guess they want to take another look? 😩

Oh that's great about the radio- I've found it to be absolutely brilliant at dealing with pain.

@backformore
Herceptin was ok for me .
I didn’t find the injection too bad at all and never took painkillers .
I had it every 3 weeks on a Friday and found Saturday ok, Sunday I was tired but managed dancing in the evening, Monday a bed day, Tuesday not to bad and by Wednesday I was back to normal .
The main side effect I had was a bloody nose and a nasal drip and I know @Skap had the same . Constantly surrounded by tissues . Never without a packet to hand . Hooray that’s over .
I am glad I give you hope. It wasn’t a walk in the park but it wasn’t a horror story either .
They used to laugh at me in the unit as I arrived with cashmere socks, my woolly hug, eye mask, headphones, hand warmer and ipad and settled in.
One more thing, I kept a “ fuck it” bag ready packed in case I became poorly and had to go to A&E.( a bit like a pre-birth bag). Gave me peace of mind that everything I might need was in one place ready to grab.

Good luck.

Morning, I've got a day off today and so of course I was awake early.

@thereisonlyoneofme That sounds frustrating, and more so if it has grown and the consultant appears unconcerned. I hope you get some answers from them soon.

@Hippiechick162 Sorry to hear about the bone scan, echoing others - we are always here to listen.

@backformore I'm having daily radiotherapy and weekly chemo for my vaginal cancer, and hormone therapy for my breast cancer for now.

I'm really struggling with having my bladder the same size as on my planning CT scan for radiotherapy, I had to have two goes yesterday as my bladder was empty when they scanned the first time. It's actually one of the more stressful parts about the process but I would never have imagined it before hand.

I didn't have any real side effects after my first chemo thankfully but I can see my hair starting to fall out more, I just had the steroid insomnia and I am a bit constipated which for someone with Ulcerative colitis is a novelty.

I'm back at radiotherapy tomorrow so they can do 5 sessions next week and I can have a 3 day break over Christmas.

I don't know whether it is the radiotherapy making me so tired or the run up to Christmas where I am trying to organise the rest of the family to do jobs and collect things I have ordered.

I keep reminding myself that it is just us on the day, it is not a usual year and it doesn't matter in the grand scheme of things but then my inner control freak voice chirps up.

Hugs, buns and a "there there" all round.

@backformore
Trying to think of treatment as a spa day might be helpful I packed more for a day of treatment than I did when I went for surgery.
In my head I tried to think about the chemo as a positive thing that was going to help me.That was hard on days after treatment when it was making me feel lousy but I would try and think of the pain as the chemo working and attacking the cancer. I've been lucky with side effects and although I've had difficult days I've not suffered as some have on this thread. I did find the routine of treatment it was really helpful. My experience was that week 1 after treatment was a write off but things would start to pick up in week 2 and by week 3 I felt fine to the extent that I would start thinking' I can't have cancer I feel fine somebody must of made a huge mistake', wishful thinking!
For the haircut I put my hair in a ponytail and got DH to cut it off. It made quite a nice graduated bob I actually got compliments on my new look!.