Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Hi Mowli, yes it was something to do with the cancer cells dying but I can also recall reading that it can take 3 months after a staging laparotomy for the CA125 to settle down and not much attention should be paid to numbers before that. Then adding chemotherapy into the mix would also more than likely have an effect on the numbers also.

Hello to the new posters, I’m sorry you’ve found yourself here and I hope we can be of some help to you at such a rotten time.

Thank you @NanaNelly and @mowly77 The explanations make sense so fingers crossed. The nurse was a bit vague, she said any inflammation could be the cause, even down to constipation etc which I did have quite badly on round one. Cells breaking up plus the allergic reactions I’ve had to the pax could also account for it I guess? My oncologist is on holiday now so I can’t speak to her for a week or so.

Welcome newbies, sorry to see you hear. I think a healthy balanced diet is a good idea, prep meals and freeze in Tupperware. My freezer stocks include veggie shepherds pie, chilli, soup and sausage casserole but I haven’t had to use them yet. I found on round one I mainly craved fresh fruit and veg so I’ve just kind of ordered whatever I feel like. I’ve started Xmas shopping online and soon I’ll start wrapping the gifts on my good days. I’ve always asked my mum if the kids and us can come for Xmas dinner there so I don’t have to prep or cook etc. Start taking a multivitamin and calcium/iron supplements but run these past your oncologist first.

@SierraSapphire how much are you shedding now? Lots or just a bit still? Do you have any patches yet? I definitely found the whole “will it fall out omg I’ll be an ugly baldy” bit worst. Since I’ve shaved it off after realising it was a losing battle I feel much stronger and more in control but as you know that is a very personal choice and one some people don’t want to make, which is also okay.

I’ll be interested to see what side effects I get this time, as they’ll be purely down to the Carbo this time not the taxol, and I plan to not take steroids or anti sickness this time unless really needed. I ate so much last cycle I put on 2kg.

I have a small patch at the front around my parting wherei think the cold cap didn't reach too and I'm wondering whether my parting is wider but I can't really say I paid much attention to it before to judge! No other bald patches and I seem to still have quite a lot of hair, it's just that all of a sudden there seemed to be a lot on my jumper. Anyway, I will try out my handyband tomorrow to cover the front, though I think most people actually wouldn't notice. It might trap some of the falling hair too so I don't moult all over everyone else! No itching or discomfort though (other than psychological!)

@bodiddly I would definitely try to do what you can in advance, make meals for the freezer and buy as much for Christmas as you can.
I began my first chemo in mid December and we had a very pared back Christmas as a consequence but I was still well enough to cook Christmas dinner.
Once you start then you’ll have a better understanding of how you’ll manage but insomnia does lead to a lot of online shopping in my experience.

Thank you all. I've done some
Family presents already but definitely need to sort nearest and dearest and stockings etc. They've said I will need to go in to outpatients once a week for treatment - did you find you were up to getting yourself food from things you had prepped in advance or was it all too much?

Can I just ask, I was told I'd be having an MRI on Monday as the oncologist won't see me before i have it done..they said I'd be phoned and I haven't heard anything yet. I realise there is still tomorrow, but if it gets to mid afternoon who do I ring if I haven't heard still? The number I can ring for advice from the nurse says it can take up to 48 hours to get a reply from them, so, do I ring the breast clinic or the appointment center? I've not been approved for the patient portal yet so I can't see on there either.

Hello @Chocolateismyfavourite and welcome. I’ve got a grade 3 triple negative BC and start chemo next week so we can go through the mill together. I am an old hand as I am still finishing treatment for a grade 3 triple positive BC from two years ago. They tell me it is unrelated!
My advice right now @bodiddly would be to get a nice silk pillow case as a treat, buy some nice cordials like Robinson’s pear and elderflower because you will probably go off tea and coffee, and load the freezer with ready meals. Use it as an excuse to make your life as easy as possible. Accept all offers of help with children, like lifts or sleepovers.
@Silkierabbit got a cleaning firm to come in regularly during chemo which I think I will copy this time. Last time it was lockdown so nobody came in at all, or saw the mess!
@MrsPnut is right about the steroid induced late night shopping sprees. With Amazon Prime I kept getting mystery parcels I had no memory of ordering. I did do lots of knitting and made everybody woolly hats for Christmas. This time I plan to watch the whole 64 episodes of Game of Thrones. I am making over my little snug with a smart TV and a NoLo drinks cabinet. I’m quite looking forward to it now! (Not the chemotherapy obviously) Also I shall try not to eat cake every day because I put on 10kg and it took ages to get rid of it. Friends kept bringing round treats for us which was lovely. I don’t think they will bother this time, as I am being very low-key about things. I am still in shock despite having been in for bloods and swabs and pre chemo and port chat. It seems like it’s happening to somebody else not me.
@AGreatUsername well done taking control of the hair situation. I’m planning to get my favourite hairdresser to cut mine off at 14 days after the first dose as that’s when mine fell out last time. I shall make it an occasion. It’s better than waiting for every handful to come out.
Sending love to all, and remember “when you are going through hell, keep going!”
Top x

Thank you - sorry I haven't worked out how to @ people. I'm not a tea or coffee drinker and after 5 years of kidney issues I'm used to water water and more water. I have Coeliac disease so most ready meals are out of the window but will try and make my own in the next few weeks. A new hobby sounds good but I'm crap at anything other than basic knitting - don't know how to do anything adventurous - maybe I need to try something new. Been doing some jigsaws while not feeling great but can't take those with me!

Do you have to hand wash the silk pillow cases? I've not long bought some M&S bamboo ones as they tend to be cooler and I'm sure I'm peri menopausal

@bodiddly all you have to do is type the @ and start writing a name and lots of options pop up below. You can write the whole name or just click on the one you want.
My suggestions were a bit rubbish for you, and your bamboo pillowcases sound lovely. I never hand wash anything these days, life is too short for that. What would be a treat? I have a friend who likes newly printed hardback books nobody else has read before. She says it’s the new book smell she likes. I like doing jigsaws on my iPad they are very calming. I quite like those posh dried fruit selections they do in Marks and Spencer. You must have a luxury you only have at Christmas that you could get your friends to buy you. Mine keep saying “Just tell us what we can do to help” so I do because I am a shameless opportunist now I am a double cancer patient!!
Goodnight all
Top

Thanks @TopOfTheCliff I will definitely give that that some thought. I am playing it low key with friends as well as I was so ill when on dialysis - one of them cooked for me for the better part of a year! They were so amazing, I can't put them through this as well. They call dialysis "living death" for a reason - I lost about 25kg and was a walking skeleton. I'm hoping this is something my body tolerates better. Will definitely get myself some treats and set up some shows to binge watch. Will be easier when I know what to expect! Fairly blatantly not getting any sleep tonight!

I laughed @MrsPnut at your online shopping thing having just bought three tops from eBay, two of which I probably won't even wear until next summer!

@bodiddly I bought some posh silk pillowcases in a "I'm going to treat myself" way (see also above) which do need hand washing, but my DD has very curly hair so she already had some satin ones from Amazon that just go in the washing machine. I didn't really have any debilitating side effects after my first chemo other than a bit of nausea for a few hours and my veins hurt, I had the second on Wed and had what felt like a bad hangover yesterday that wore off during the day. I am eating very healthily and exercising every day. The only change I've noticed to my taste was that I couldn't drink coffee with sweetened coconut milk in it! Other than that I've eaten normally though I did fast throughout the chemo to protect my healthy cells. I didn't take the extra drugs they gave me as I worry that the side effects are worse than just letting the chemo wear off naturally. I would have taken them though if I'd felt really bad.

@Chocolateismyfavourite Ah, the cancer-related admin. There were all sorts of problems with my diagnosis and treatment and I felt like I had a second job calling round multiple people and I hate using the phone. Stress just at the time you don't need it. No idea when the NHS will start to use emails. My answer would be to just call everywhere until you get an answer. Some of the national cancer charities were useful to me too in advice about the system when things were going wrong.

Good luck everyone. starting or going through chemo for the first or subsequent time. It's not fun but it's good to be able to connect and offload here.

@bodiddly M&S have some nice made without wheat items. My DD’s boyfriend has coeliac disease too and they often have treats from there.
I did manage to have the things I had made but I found chemo reasonably easy. I had no nausea with any of it, I would suggest though having some easy to eat food like yoghurt that doesn’t require effort. (I do eat loads of yoghurt though anyway).
Do let friends help, fetching prescriptions and bringing treats is a way of them feeling useful.
As for hobbies, I read and played solitaire on my phone whilst having chemo.

@TopOfTheCliff Your little snug sounds ideal.

@SierraSapphire I'm so new to this - what do you mean about fasting to protect healthy cells? Is that what they advised you to do?

I'm on 40mg a day dexamethasone steroids for 4 days now before starting chemo but they did say they would be ongoing as one of the 4 chemo drugs id be having. Were yours optional then? I'm hoping the dose will be much lower as the side effects at high dose yesterday weren't great. Will see what today brings I guess.

I've got a hyper metabolism for drugs that means I have to have much higher doses of things to get me sorted. One of my kidney anti rejection drugs, most people are on 1-2mg - I've been on 22mg with some lovely side effects too.

@SierraSapphire ah, I thought it might turn out a bit like that. Thanks for the heads up.
Can I ask why the silk pillow cases are a good thing?
Also, for those of you who have, did you loose your hair quite quickly? What's ironic is, i have had very short cropped hair (even shave on one side at one point) for the best part of 8 years. In may I decided to grow it, all through this heat wave, it's nearly down towards my shoulders, and now, I'm going to loose the bliming lot lol.

@bodiddly I took my drugs beforehand, but not afterwards. I have another condition that makes steroids not advisable. They weren't very happy that I didn't take anything, but that's been my general philosophy in life not to take anything if not needed! And also no, they don't advise fasting either, my consultant pulled a face when I asked about it! And also it's probably not something you should do without other supervision, especially if you've not done it before, but there's increasing evidence that it can reduce side effects and improve the effectiveness of chemo - I just mention it because I think it's made a big difference to me (though I haven't tried not fasting so it's impossible to be sure) and don't want to mislead people when I recount my experience. If you have a hyper metabolism does that mean that you process the chemo drugs well then and may get away with few side effects?

@Chocolateismyfavourite the silk pillowcase means less friction on the hair to damage it - as well as hair falling out it, can become quite brittle so you want to avoid it breaking too. It also helps to prevent tangling with the falling out hair getting matted with the hair that's still attached. I am on 3-weekly paclitaxel and carboplatin, two days after my second cycle. I cold capped and am having a slightly scary shed now, but still have enough hair left. I've heard other women say they lose it between 14-21 days. I think if you don't cold cap it tends to come out in bigger chunks, mine is shedding fairly evenly all over. I grew mine longer during the pandemic then cut it to chin length before chemo, I do kind of wish I'd kept it longer though as I think it gives more options for cover up.

@SierraSapphire wow it comes out quickly then. Least I know now, thanks. I will order some new pillow cases today, they are like a good buy from the sounds of it.

I realise it carries from person to person, but, when you have the chemo, depending on the cycles, how rough does it make you feel? And for how long afterwards?

Not sure how things will work out for me as I'm self employed, and while all my customers have been lovely saying take off all the time I need, if I don't work I don't get paid, so I'm wondering how to rejig them all to like before I have a round of chemo, if that makes sense. Obviously I know nothing at the mo except I'm meant to be starting on 22nd September, nothing about what type, when and how much yet. I do realise I won't be able to work on certain days when I'll feel ill, I'm thinking about the days when I can.
Sorry for all the stupid questions btw

@Chocolateismyfavourite I used the cold cap in an effort to protect my hair but it didn’t work at all for me (possibly due to the thickness of my hair or possibly it wasn’t tight enough). My hair started shedding big time on day 14 and by day 19 I gave up and shaved it off as I’d lost too much to make it worth continuing, I only had Bob length but the handfuls and handfuls of hair everywhere was so depressing.

I’m another who avoids post chemo meds unless really needed, I do take the pre meds though and will pop and anti sickness if needed. Like Sierra I had a fairly easy and mild first round, day 2-4 were very achey and I was exhausted but outside of that my main issues were tingling in my feet and a rash. Starvation is not recommended by the doctors. There is some evidence emerging that it may be beneficial but as yet it is not something they encourage, but a personal choice. I for one do not have the will power.

I have my wig appointment today to look for one. My 5 year old has turned into the worlds biggest brat and I’m wondering if they’ll take him as part payment.

@Chocolateismyfavourite I'm self employed too, it adds an extra layer of difficulty to all this! My chemo got cancelled the first week I went and I had to go back the second, but I had told everyone that I would be away for a week, and put my out of office on. Then when my chemo did happen a week later I felt a bit bad saying I was out for another week, so I didn't say anything, and actually I was absolutely fine, I worked on the morning after chemo and then just worked as normal, although I don't think I would have been able to do that this week I didn't sleep well and felt hungover! I answered a few emails in the evening and did some invoicing and I'm fine again today on the second day after treatment. It hasn't really affected me badly, but I am doing a lot of things to try and mitigate the effects. When I did the same research before my treatment started I had planned on having the week after treatment off and then working normally for two weeks and then just repeating that pattern, being aware that I might get more tired as the treatments went on and have to adapt. It works out quite well for me work-wise though because my chemo is on Wednesday, I try not to work on Fridays anyway and that and the weekend are likely to be my worst days. I've only told very long-standing clients what's going on, everyone else I've been a little bit cagey with as I am a bit worried about the longer term that people won't want to give work to me, but also because I'm just fed up of questions about cancer! I have a friend who's covering some stuff for me.

@SierraSapphire I have no idea on the chemo drugs yet as im a couple of weeks off starting. Only just had bone marrow biopsy result and PET scan was 2 days ago. They went through the regime with me but were going to have to consider contraindications with my kidney meds so need to consult my other hospital. All I know is sedation, tramadol, codeine, oramorph and even morphine have very little effect on me - and they have to tweak drug doseage for months or years to get my levels to where they want them. I burn through things at tthe speed of light. Wish my weight metabolised that way lol! My chemo is going to be weekly with an infusion, a stomach injection and 2 lots of tablets. Sounds very different to what you are all having. Uncertain about hair loss but dreading it if it happens as I have a huge birth mark/mole on the back of my head that's not going to look good - god that sounds so vain!

@bodiddly losing our hair is a MASSIVE thing! Some weekly infusions are less likely to cause hair loss though so don’t lose hope yet until you know what you’re having. I’m super conscious of my head now, I tend to wear nothing in the house and just avoid mirrors and I’ve bought a little selection of turban type hats on Etsy which has given me enough confidence to leave the house at least. Don’t feel vain, honestly it was my biggest issue too and I’ve hated every second of admitting it’s happened but we do chemo to give ourselves the best chance. And I guess that is worth the horror of hair loss, but we’re still allowed to feel dreadful or angry or sad about it.

@SierraSapphire I
Get what you mean about vanity. In most ways I'm pretty positive
After 5 years of this. I've become resigned to just doing what im told and accepting every treatment without fighting it but I do definitely question what's necessary etc. Hair is nothing in the scheme of things I guess, my belly is covered in about 8 scars from surgeries so what's a little hair! That said, no one gets to see my belly!

I read somewhere though that loss of hair is also loss of privacy, you lose control because you look like a "cancer patient" and then you have to cope with people's reactions to you or talking about. You are not able to disclose information to who you want and when you want. I sometimes see women in the street who are bald or wearing turbans, and on the one hand I want to smile at them in empathy, but then as I've still got my hair they will have no idea why I'm smiling at them and that I'm going through it too potentially, so mostly I don't intrude.

@SierraSapphire I hadn't thought about it like that. Are you under a specialist cancer centre or a general hospital? I'm under a MacMillan Care Centre under UCLH and am getting used to the fact that everyone in that massive building either has cancer or is being tested for it. I guess there they'd get it but maybe not elsewhere.

Has anyone developed the technique for taking lots of tablets in one go rather than individually? - it's a life skill I'd like to learn after 39 tablets yesterday, or is it something you can either do or not?