New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

That's a good way to look at it ranout :) saving my energy for the fun stuff. I have been feeling bad for being so "lazy". I know it's not lazy and obviously I wouldn't do it out of choice, but that's how it feels sometimes. I will look up Eldorado.

Namechange it's a horrid feeling.

Mysillydog I fidget lots too, which is why I took up knitting! If I don't have anything to do though I get restless after a few minutes. I don't always keep up with the subtitles to be honest. Luckily the plot is quite predictable and easy to catch up on

Anyway, I must get ready for bed. My hospice nurse is visiting tomorrow so I'll have to be vaguely alert by 12.

Sleep well lacies

It’s been hard reading so many of the updates on the thread.

Especially as everything is being beautifully boring, normal and stable for me.

Though I have been referred now for colonoscopy (‘‘twas deranged poi which took me to the docs in the first place), but as the scans ruled out malignancies, I’m blissfully on the ‘routine’ list and so it will be 3 months before I need to tackle The Sachets.

I’ve had guests the past few days, which has been lovely. They made the house heaps more cheerful, and we’ve been at board games too. Risk is akin to a blood sport. Articulate was very, very funny (though I despair of the DC’s learning sometimes)

I haven't posted for a few days as have had birthday stuff going on (I cooked for friend on Friday here & suddenly realised I needed a major cleaning overhaul b4 & went into overdrive) another friend hosted yesterday & we (me & the girls) had a sleepover and spent the day there. I'm so sorry to read some of the posts since I was last online. So many people are having such a tough time

Leslie I am glad you've enjoyed a cheese based dish from the new kitchen and hope you get to see it today & win at more board games. I too struggle to concentrate on a film & longer to shows, so am impressed at the Spanish period drama! We are doing a wasgij puzzle at the moment (1000 piece one started when the girls were ill) they have given up on it and it is driving me mad as you don't have the actual picture to go on, just the scene looking at the picture and a few clues... I am about 3/4 there!)

purple fingers crossed for a trial still, I hope the weighted blanket is very cosy & just what you need.

keepcalm good luck for today.

namechange the (lack of) steroids are probably the cause of the weight loss. I think the "is this the last time..." thoughts must be natural at points in your treatment. Do you think they are more on your mind because you are worrying about the weight loss? If so, it is def worth calling up your oncologist & seeing if they can put your mind at rest in that regard.

Thanks everyone for the advice re toenails. The still look hideous, but after a few days of being unbearably sore, the have calmed down a bit. I will go into the cancer centre and see if I can get a referral or recommendation for podiatry. I am trying to eat lots of food for helping with inflammation, so not sure if that is what has made the pain ease.

fuzzy have you booked a GP appt re the lump under your arm? I probably would so they can rule out any nasties and then you can concentrate on easing back into work without that distracting you.

TQ I hope your breathing feels less of a conscious effort again and you had a good time meeting your daughters partners family.

knicker hope you're coming out of the other side of the chemo side effects. I found pink grapefruit (squash with fizzy water or the actual fruit) really helped with that fuzzy mouth feeling. Egg & chips also helped & caponata (vegan recipe from Bosh is a bit vinegary & cuts thru the furry mouth thing well)

ranout have you sold yet?! I cannot believe you only had the mx on Wed and are doing house viewings already! I am also jealous of all you lacies who lost their drains so soon after their ops! 16 days here and over Christmas too! Gah!

Have as good a day as possible everyone (& sorry if I have missed anyone, my memory is only carrying me so far at the moment!)
Good luck with the hospice nurse today Leslie

Xx

BBC Breakfast doing a piece in talking about cancer to people living with cancer.

Interesting - focussing on listening to the individual (because there is significant polarisation between those who like/dislike the ‘fighting’ talk or being on a journey. (‘War’ and ‘battle’ being reported as most reviled terms) And that dealing with others misconceptions is something that is just an unwelcome embuggeration.

There seems to be a new ad about it?

Hi all! Just quickly popping in, sorry I've been so rubbish with posting on this thread lately. Hospital days are long and strange and I can't seem to focus on anything for longer than two seconds.
I do keep up with you all though, and I'm always pleased to hear about your good days or finished kitchens, games and cheese recipes.

I know it's the Daily Mail but headline news right now is a poor woman with advanced ovarian cancer who was misdiagnosed on her first visit but didn't pick up the symptoms herself until too late (just like me). Feeling 9 months pregnant was a very apt description...

Just stocking my head in to say Hi. I had my CT Colonography on Friday which was an breeze compared to the colonoscopy the week before. There was no mention of when I'd get any results and I forgot to ask. There's no news either from the oesophageal biopsies so I dont know whether that's good or bad.
I just feel in limbo at the moment.... Love to everyone on here x x x

Hi All

Been a bit awol recently as have been feeling a bit odd about the mastectomy. Felt on a bit of a high that it was done and over with but now having to get used to looking at myself with no left breast and it just feels odd. I still have quite a lot of pain and swelling under the arm so am seeing the breast care nurse tomorrow. Just want to check whether the amount of swelling I have is normal or not. If it had just been mastectomy I think I would have had very little pain but it's the under arm removal of the lymph nodes which seems to hurt most.

Talking of board games, I remember reading the book Mr. Nice about the cannabis dealer and he said he played Risk a lot with his friends at Oxford. Might buy it if you can play with just 2 players.

Sorry to hear of everyone else's struggles at the moment.

xxx

@Mrstraveller good to hear from you. I had my single mx last Wednesday I think they took some lymph nodes (it wasn't something they were supposed to do originally but one of the sentinels was glowing so I think they did it while I was under!, I'll check with them next week)!
Anyway they told me I'd have swelling for a few weeks if that helps. It's definitely sore under my arm and round my back rather than on my boob! I didn't have drains and that's possibly why they said there would be swelling but they did say my body should accept the water back into it at some time!
Someone has recommended Asda post surgery bras to me. I'm going to have a look for one for now and then get fitted properly in a couple of months time.
Waves to everyone else.

Thanks ranout. Yes the back of my shoulder hurts too. Are you doing the exercises? I find my stitches seem to pull a bit. Not exactly painful but quite uncomfortable and weird feeling. I have stopped taking ibuprofen and codeine. Trying to stick to paracetamol now.

I have had a bit of a disaster with bras and my advice to people would be don't spend any/much money until things have settled down. I had/have very small breasts and have found that the breast form from the hospital and the one I ordered online are far too big. I used to wear padded bralet tops and what I have found works is just to take the padding out of a couple of those, put in a mastectomy bra and it seems to be enough. However wore a bra for the first time yesterday and felt really uncomfortable after a few hours. I was relieved to take it off. I will have a look at the Asda one.

I am thinking that what might work for me is to carry on wearing the bralet type tops and just buy a few extra so I can use the padding. I didn't really like wearing bras even pre-op.

xx

@Mrstraveller I am doing the exercises but only day 5 after surgery so their not too bad. I'm taking arnica tablets and my bruising looks pretty good, mainly yellow rather than black and purple!
I've only got the one bra that hospital gave me. I'm taking all your advice on board and I may just get another one and then wait for my proper prothesis and all the swelling to go down. I'm just going bra free at the moment. I might have a look at those vest tops which have support in them as something inbetween. Are you managing to get stuff over your head ie jumpers? I've managed that. It's harder pulling my jeans up though! There should be somewhere that sells a post surgery capsule wardrobe!
Seeing the nurse tomorrow and hopefully the bandage will come off, I haven't been able to have a proper shower and I'm desperate for one!

ranout. I can get stuff over my head at a push but it bloody hurts!

Spending most of my days at home in pyjamas still.

However, have to go out for the next 3 days; breast care nurse tomorrow, herceptin injection and oncologist on Wednesday and GP for something non breast related on Thursday....and looks like we are going to have some snow...having to get up and get dressed for earlyish in the morning feels like a massive challenge. I hate the swelling under my arm though so looking forward to getting it checked tomorrow.

I was told I could have a shower when I had the dressing on because it was waterproof but didn't fancy it when I had the drains in. I haven't had a bath yet. I am just having showers with that zero percent Sanex shower gel. I do have some arnica gel which I rub into my arm and shoulder after a shower. I'm avoiding anything touching the stitches at the moment though. Once it's all calmed down a lot more I might start putting some bio-oil on.

xx

to ranout and Mrstraveller I hope you continue to recover well and that the pain eases soon.

Tahiti how is your treatment going? I hope the food isn't too grim :)

noodles the wasgij sounds like hard work! My friend and I spent months completing a magic eye type puzzle. So just a whole load of coloured squiggles. It was quite satisfying in a way.

Borntobe sorry that you're still in limbo. I hope you get all the results soon

iVampire it's always good to be considered routine :) I love Articulate.

TQ I cross-posted with you last night. I'm glad to be helpful. Many friends who had been very open about their experience stopped sharing when they got to this stage, which is obviously completely understandable. But it meant that they seemed to go from "normal" to dead very quickly, and also that I had no idea what to expect in the dying process.

I saw my hospice nurse. She's booked to see me again in two weeks so evidently she's expecting this to drag on a while longer! I don't like to think more than a few days ahead.

My oxygen has been increased to 2 litres and the air nurses are going to assess me later in the week. I've already noticed the difference in recovery time after using the loo. My heart wasn't pounding as badly and I got my breath back sooner. So that's good. I was starting to find it quite unbearable.

Leslie really pleased to hear all that, especially that the extra oxygen is helping

Keep posting @WhatWouldLeslieKnopeDo and I'm pleased the oxygen is helping.
@Mrstraveller biooil do a gel which I've been using (not on my surgery wound) just to try really and I like it. It's nice and warm, unlike the oil which goes on a bit cold! Maybe I'm just a wuzz!

Leslie that sounds good about the oxygen. So pleased they've upped it and it's helping! I also like to read your updates and am so grateful for your honesty.

Treatment is going well I think. I'm not suffering as much with this one, compared to the last type of chemo. This one is meant to be a much tougher and riskier regime too. Maybe the first one just didn't agree with me.

Sorry to hear post surgery troubles Mrs and Ranout. I hope recovery speeds up for you both! Anyone heard from keepcalm? Iirc she had surgery bout the same time?

Hello hello, sorry for being so absent!

For the first time yesterday I managed to get up, dressed, do an hours work, go to hospital appointment, lunch and a small wander in at the shops before staying awake till 11pm.

I KNOW it’s not a huge achievement in the grand scheme of things but it was a big step for me lol

@Tahitiitsamagicalplace, @Mrstraveller, @ranoutofquinoaandprosecco have been thinking of you all and hope you're doing okay!

I too am more sore arms and shoulder blade wise

Am trying to do exercises too and managed an over the top jumper yesterday but it's a massive batwing thing so doesn't really count

I wore a supportive shelf vest thing which nearly cut me in half so that's not happening again soon but I am rather large and all the weight I lost post surgery (10lbs) has all gone straight back on

I find the biggest problem I have is walking about not moving my arm properly as if trying to protect myself. Does that even make sense. I keep having to remind myself to relax as am always so tensed up!

Am still taking the drugs but suppose I should start weaning off......

And am netflixed off my nut, all those plans of enjoying my kindle too. Oh how I laugh

@WhatWouldLeslieKnopeDo am so pleased the increased oxygen is bringing you some comfort x

@Tahitiitsamagicalplace I had no focus in hospital either. Do you have a tablet you could watch a box set on? That has been my thing and can highly recommend Grace and Frankie for some light laughter 

@noodles44 well done on the message remembering everyone's updates. I'm embarrassingly bad at the moment so should maybe cut down on some of the meds lol

My update from yesterday at the hospital.

Oncologist & team happy that margins are clear after pathology came back but something in pathology makes them Worried about local (breast) reoccurrence so have decided to do radiotherapy now to try to avoid that. Lungs can be dealt with later.

Radiotherapy & chemo cannot be done simultaneously so radiotherapy to start as soon as surgical wound healed (hopefully mid Feb) and will be done every day for three weeks.

Once that’s finished oral chemotherapy starts and if it works that’ll be me and that’ll be used as a maintenance drug for life. If it doesn’t work then we’ll try something else.

Scans every 3months from now on.

I like it better when there is a plan in place 🙂

I have breast clinic today but I imagine that's just to check the wound. Which one day I will manage to actually look at, maybe.....

Noodles thanks for the food tips. I'm going to track down delicious chip shop chips for lunch I reckon - drenched in vinegar - see if that hauls me out of my gloom

@KnickerBockerGlooooory omg now I want chips!!!

Leslie that must be so tough with your sister living so far away, I'm lucky as I although I don't have a big family they all live within half an hour of me. I know a commode isn't ideal either but as you say all dignity goes out of the window. With my stoma and nephrostomies I can just empty them wherever. Silver linings I guess Did you manage to finish the scarves? I've made the head of the unicorn you sent me, I'll send a photo when she's finished

How are your hands TQ? I've ordered the weighted blanket so I'll let you know if it's any good when it turns up

Keepcalm that's brilliant news, having a plan in place makes it so much better. Radiotherapy gave me no side effects at all so hopefully it'll be the same for you

and for everyone else. It's snowing here and I don't need to leave the house for at least a week so I'm hoping it lays

Oh thank you @purpleunicorns ! I have to admit am more than a tad nervous as I remember my mother being so horribly sore after hers. This was >10yrs ago though so fingers crossed it's improved since then!

keepcalm glad you had a good day yesterday

purple I’m quite excited about the prospect of snow as I know I won’t have to go out in it! From my hospital bed I can see a big grey cloud, so I’m crossing my fingers

Hello. I thought you may like some good news. A year ago I was told that my cancer was so rare and aggressive the team didn't know how to treat it. Yesterday I was told it has pretty much gone. Miracles do happen.

6 chemos, a month of radio chemo. I've gone from agonising pain, not being able to walk or sit down to being completely fine.

Thankfully the first attempt the hospital planned has worked. The recent pet scan showed it's gone from all my lymph nodes and is now so small and inactive it is classified at background.

I fasted through the chemo and had no side effects. I've also turned vegan, given up alcohol, taken up yoga and reiki and take daily turmeric supplements. These may not have had any impact at all but what they did do was give me some control, this helped me enormously.

I know I'm one of the lucky ones and it probably will get me eventually but hopefully this helps some people waiting or getting results it doesn't have to be the total horror story you envision.