Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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I'm feeling productive today - third load of towels in the washer, cooker top stripped and cleaned, living room swept after a mishap with one or two of those balloons with confetti in them (I was merrily popping the second before I realised the first had sent confetti everywhere 🤣), and downstairs loo cleaned. I've binned a bag of randomness that I hid a while ago & hasn't been missed, too.

Planned to stop at midday but, actually, I think that will do for today. I'll print a couple of patterns I want, and re-print my crochet pattern that had juice spilled on it, then finish my current peg dolls and decide what to do next.

I've stepped right back from my voluntary role overseeing three Girlguiding units - I have this year's accounts to finish, but am passing on all the things & plan to just attend and help as and when I'm able at the moment. I may take back the littlest ones at some point but my friend is happy for me to dip in and out when I'm not too knackered & keep them ticking over. I've been helping her "behind the scenes" so it's not all on her. I miss the girls very much, but think it's best to be a bit selfish at the mo and focus on me and my own girls, and enjoying things with them.

Hope everybody's Monday isn't too bad so far 😊

Can I ask a quick question? Was diagnosed with BC 4 years ago and have been on Tamoxifen since. I also take 100mg Sertraline for night sweats and sleeping. My periods have stayed regular since starting Tamoxifen but are now starting to dwindle away. It's been nearly 3 months since my last one. I've been struggling with intermittent very low mood since Christmas, it feels awful, no point to life, unable to smile, feeling totally numb, that sort of thing. It arrives as quickly as it goes, but always lasts at least 10 days. The rest of the time I feel normal, upbeat and positive. I'm wondering if it's getting worse because I'm down to my last dregs of oestrogen?

Has anyone else experienced anything similar? And did your mood swings improve once you stopped taking Tamoxifen?

Hi all, this is me freaking out over something again. Just tried to contact my breast surgeon but just got an automated away on holiday reply from secretary.
Could this be a blood clot in the arm or is it likely more sinister. I know I need to try to get hold of someone, but just desperate for experiences at least while I wait.
I found a smallish (like a chickpea) hard lump in my arm near the inside of my elbow but somewhat above it. I was massaging my cording and suddenly noticed this. It is not in line with any cording, just sitting there on it's own. Firm, semi mobile but not fully. Has anyone had a blood clot in the arm and could feel a lump? I nearly fainted from fear when I first noticed it. I thought blood clots cannot be felt, and caused other symptoms. I don't have pain etc. This is not on the arm on which the cannula for chemo was but on the side where I have had other issues following surgery (notably cording, an armpit seroma).

I will try to ask a nurse, but feeling so down, like this is the beginning of the end.

Whoa @isaxx dont panic! A thrombosis or phlebitis in the vein would almost certainly have some redness soft tissue swelling or pain with it. A random lump might be a stray lymph node responding to all the trauma or it might just be a lipoma which is a harmless fatty lump. Contact the BCN team and get checked but it’s very unlikely to be a serious problem.

Bookist So sorry to hear that. I went into menopause with chemo and on Tamoxifen after, now on it a year, no anti depressants. I was warned could affect mood but my mood was very depressed during treatment as I felt a burden and useless but better afterwards. I never got it for that long either, maybe a few hours then would come out of it and be happy and needed to distract myself. I would speak to gp or team and look into counselling etc. I find swimming really helps. So sorry Flora, that was similar to me and a year on I am much better.

@Topofthecliff thanks for replying and trying to calm me down. It is hard to not go mentally to the dark side immediately. I spoke to a BCN and she said she would speak to the oncologist but that since I am seeing her sfter chemo on Friday, she will probably not assess it until then. Then there's the weekend. I don't know how I am going to get through the wait. The lump does not have the standard features of a lipoma or of a clot and just feels so familiar from May when I found the breast lump. Random isolated lump, hard, uneven. Ok, I am driving myself nuts but I am afraid I am struggling to find a way not to completely spiral. Just had a cry over the phone to my partner while he is at work.

@isaxx I am sorry to hear how scared you are. You have prompted me to get my shoulder Xrayed as it has been hurting for about a year and is bothering me at night and when I mentioned it to the oncologist she said if it persisted she would investigate. The fear of secondary cancer is so debilitating. We have to be brave and get things looked at to rule out the worst then we can go on coping. Sending hugs

@isaxx so sorry, I have no wisdom to share but am sorry you're panicking. Hopefully your oncologist can get to the bottom of it quickly on Friday.

@TopOfTheCliff hopefully your shoulder issue is also quickly resolved!

I'm tired now, think I was a bit over enthusiastic getting on with everything this morning. I'm going to unpick a couple of shoulder straps that dd2 wants altering, mindlessly scroll t'interweb & listen to what's going on on Food Network for an hour or so, then bed time for me 💤 Dd2 is likely to be up early - she's exceptionally excited about her sleepover tomorrow I'm regretting it already.

@isaxx sorry I also don’t have any wise words but totally understand the panic side of things as my current ‘toxic trait’ is to panic anywhere and anytime! It sounds ridiculous but when I have been really shaking and teeth chattering just thinking about my breathing has helped. I know that’s obvious and the first thing everyone suggests but maybe that’s why it has helped me - I don’t have capacity to thing of anything fancier in that moment.

@lucysmam the activities that you do with/for yours kids sound so lovely! I need to do more with my 5 year old DS who loves crafting at the moment so I need to make the most of that.

I am currently on a ward recovering from the APR surgery I had for anal cancer last Thursday. The epidural has been amazing so far which is good because I have had the full works of other issues…sepsis, such low BP I required two blood transfusions (I think that was what’s they were for…) as well as adrenaline and all sorts of vile goings on. Today they are taking away the epidural though so I think that’s why I am awake at 4an panicking.

Best wishes to all

@Brunonononooo Thinking of you and sending good vibes.

@Brunonononooo sending you best wishes. I hope things improve for you.

Thirteen days post surgery here. Think yesterday was hopefully the worst weepy day. Get my big surgical dressing off on Thursday - I’m still quite sore and very numb on the underneath of my arms.

Back to being able to do a long dog walk.

Best wishes to everyone dealing with cancer today x

@Brunonononooo thanks for your reply. Yes, trying to breathe is about all I can manage right now. Very best wishes to you and hope all you are dealing with gets better soon. It is so hard going.

@Brunonononooo That's a lot to go through. Hope things look up for you and the removal of epidural is not as scary as it seems.

I'm back in hospital today. Today, bowel prep, tomorrow, surgery.

Thanks @Brunonononooo . I really struggled when they were younger though - we still did things together/I did stuff for them but it wasn't as enjoyable, at all. These days they're like my two little besties with boundaries they like to test too much sometimes. Dd1 especially is a carbon copy of me when I was her age!

I hope the removal of the epidural isn't too tough going.

@MyNamesGaryAndImAddictedToChips best wishes for today and your surgery tomorrow.

My right breast is less red again than it has been - it seems very dry though & I'm not sure I'm not going to irritate it if I put some moisturiser on it. I've also noticed a slight bump where the first drain felt like it was pulling, that I hadn't noticed before - tbh though I've been looking more at my middle rather than just under my ribs.

I don't think it's anything but am going to mention it to the BCN when she rings this week. The ascites has almost gone - I am very nearly me sized again so I wonder if it's just the muscles are a bit stretched from being out of shape for so long & I've just not paid attention?

As predicted, dd2 has been up a good while preparing for her sleepover. She's just getting a shower then getting ready to meet her friend, she says. My earphones are charging away 🤣. I'm going to wipe down the camp bed frame & swish round the upstairs bathroom today - that, wash up last night's pots, and a load of washing, will probably be it for today.

Afternoon all. Am battling through family holiday - some lovely moments, some difficult ones.
I need to ask about weight gain. After the crushing blow of learning I wasn’t going to get a breast reduction, I thought well at least I will lose weight. However further research suggests that I should expect to gain if anything.
This is extremely upsetting. Can anyone offer any words of comfort?

Good luck @Brunonononooo Hope all goes well today.
Also good luck tomorrow @MyNamesGaryAndImAddictedToChips

@Florabritannica if you are having chemotherapy it’s very hard to avoid putting on weight with the oral steroids they give with each round. The good news is that when you get out the other side and resume normal activity it comes off again. I’ve done it twice and first time I put on 10kg second time just 8kg. I’m holding off losing too much while on Capecitabine as my energy levels plummet if I don’t eat enough. That’s my excuse anyway.

I am feeling a bit neglected as the nurses haven’t phoned yet. I know my bloods are okay as I’ve looked them up online. I’m expecting to start round 5 of oral chemo tomorrow. I just want to get on with it now regardless of side effects. I can feel I am edging closer to the end of treatment. Three more months left…

Flora I did a years cancer treatment including 2 surgeries, radio and 12 weeks chemo with weekly steroids and my weight remained stable throughout - they don't like you to lose weight in chemo. My appearance overall though was trashed by cancer treatment - 1 breast cut off, scar, hair coming back looking like the 118 118 advert and I have really struggled with that on top of cancer and not being able to work due to SN child and all the 10 pointless but have to go to meetings a week around that and the cancer treatment.

The best way to think about it is this is a year to fight cancer and be kind to yourself with the rest. Your body may come out looking like its been in a warzone but that's as it has been in a war against cancer. Prothesis, hats / wigs, makeup, jewellery, nice clothes help. At first I just wore anything and that made me feel worse. In time things improve like I am 1 year from end and my scar has gone (1.5 years from surgery) but I still have another years wait for reconstruction. My hair is still out of control but getting better but will be another year before its back, anyone who like short hair cuts there are lots of lovely styles hairdressers can do.

The main thing you need to focus on is getting rid of the cancer. And take nice days out where you can. Take it day by day. Swimming helps me massively as well. I also have not put weight on with Tamoxifen but do swim 3 times a week. In cancer treatment I kept to 1600 calories a day and ate little and often and that worked for me but everyone will have a different number of calories. Many people do put on weight with steroids and comfort eating but its possible to keep weight stable at least on my regime. But the focus needs to be on getting through treatment and its an awful year but life gets better after that. And there are still nice times within that year, I had trips to Wales to see puffins, Scotland, Lake District, Cornwall all within that year.

Shit. Would literally rather be dead.

Why is it that you never want to do anything so much as when you can't?! I hardly manage to eat much anyway but today I'm having fantasies of Belgian buns of all things, something I never eat. 🙄😄

@Silkierabbit Thank you. I has that thought too - about a year to fight cancer - and just handing it over. The time will actually pass.
Lots of good advice. I was just wearing anything too - doesn’t help that my abdomen is swollen with the cancer - but if I go out I can dress to hide it and I look better.

There are so many layers to coping with this situation- problems that existed before cancer, and continue to matter. Problems that cancer brings (long and diverse), and just mundane life problems (dog needs to go to the vet/ the groomers etc, what’s for dinner?)

I think if DH had this I would be more empathic than he is to me. Nothing actually wrong with what he’s doing - but I think women cope and carry the emotional load at the best of times.

It’s just exhausting.

Sorry @Florabritannica I think we cross posted. I wouldn't have posted anything so flippant if I had seen your post first. I hope you are ok.

Very much not ok. Initially consoled myself with prospect of breast reduction. Then chemo-related weight loss. Am 2-3 stone overweight and really really fight to lose anything. The thought of putting on weight as well as everything else makes me just want to check out.

@Florabritannica being on steroids for chemo hasn’t increased my weight or appetite. It maybe doesn’t happen to everyone
The cancer I have is in my omentum and peritoneum - so you can see above that my abdomen is bigger than before. But it’s not really weight gain
You might be ok. Xx

It seems weight gain is standard with breast cancer

@Florabritannica I have always been a bit overweight and have strayed into obese once or twice. When I was diagnosed I had been through an utterly shit few years and had ended up the heaviest I’d been for ages. I managed to lose weight initially, put a few pounds back on over chemo but have lost it again. I’m a stone down overall now. So it is possible. I think giving up alcohol made it easier for me. Not that I was a massive drinker but drinking leads to snacking for me. I’ve got funky bleached cropped hair and new glasses and feel pretty good about how I look at the moment. So don’t despair on that front. I know it feels like just one more piece of shit to deal with though. Sending strength.