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

[LemonDrizzle10]

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*actually, he had bi polar and was an abusive cunt.

I’ve had way more support since getting cancer than I had in 13 years of two kids with severe Tourette’s. It does make me laugh a bit - I find it very ironic.

I actually feel I don’t want some of the current support because I really could have done with it previously - but I had to become self sufficient and support myself emotionally. It was pretty crap without going into lots of detail.

Sorry you didn't get to see the puffins in Wales Sierra We literally booked a week or so in advance so could check windspeed wasn't too high and weather was OK and the company we went with were wonderful. Agree with people saying there is amazing support from general public etc with cancer. The company we missed the boat departure as we went to wrong location and they knew I was doing chemo and they had put me on that boat specially as only 12 on a big boat and they held the boat 30 mins for us. DH drove the car onto the pebbled beach as he was trying to get as close as possible and of course car got stuck and about 20 people helped us including 4 who stayed for hours until a tractor arrived and messaged next day. Skomer puffins in April, the orange comes later. We had so many rainbows that day with sun and light rain.

Yes Red I had that too. I used to cry at how kind people were to me with cancer and how much I got on NHS and yet how there was almost no support and no kindness and no services including education for my lovely, mute autistic DS. I wished I had none and he had everything. Though very glad for the support I got. And I used the charity Somethingtolookforwardto.org.uk to get things for him. It made me so angry that he had done everything he was asked in lockdown for others, no school, no friends, no going out and then when he needed people they abandoned him and his school declared can't meet needs find another one a month after my cancer diagnosis. And still 1.2 years on they are saying no school anywhere in the country as a place shortage in his age group and nobody wants the SN kids, he's really gentle and kind but now made to feel like he is worthless by society and services. Though health have come through now but education should have helped way before it got to health. If you ever want to chat Red feel free to om me or anyone else who has similar children can do too, I know how difficult it can be.

@Florabritannica I'm sorry to hear you're struggling. I can understand how your group holiday is an ordeal and hope that sneaking off to your room to work can give you a couple of hours of peace.

@lucysmam my CTs are chest, abdomen and pelvis. I've just looked back at the appointment letter but it must have had the eating restrictions on the page I had to fill in. I think it said no food for an hour. You do have to drink beforehand and all 8 scans prior to my recent one advocated drinking a pint and a half of water an hour beforehand. This one said 'plenty'. The images are clearer if you're hydrated properly. It's not one of those scans you have to hold onto your wee, you can go beforehand. Could you wear your leggings under your jeans so just take them off in the loo before you book in, (I'm too fat for this)? You'll be offered a cubicle to change if you prefer to change there or want a gown instead. Otherwise changing into leggings or pyjama bottoms would be fine, you'll probably be surrounded by inpatients in various nightwear so you won't 'stand out'. Also, wear a sports bra if you have one so no metal, otherwise you'll have to take it off. Good luck for tomorrow, CT scans are really fast when you get in there.

Here's "my" puffins from N Yorks this year!

Today I find I am enjoying the freedom of not being terrified by the phone ringing or the post!

@Fantasea thank you, that's really helpful. The jeans I'd planned to wear are wide legged enough for something to fit underneath I think, then I could just nip to the loo after to swap bottoms. I think the strap adjusters on my bras are plastic but it had occurred to me to wear a sports type bra to be on the safe side so I'll get that out when I next go upstairs, so I don't forget. I've packed emergency handbag chocolate in case there's a wait, fingers crossed there's not!

I'll leave my earrings, rings and watch with the girls dad. I feel naked without them.

Oh wow @SierraSapphire it looks like you were really close to the puffins!

I'm trying to finish off the gingerbread house with a couple of lollipops on the side but keep smudging the paint 🙈 Possibly something to do with the constant interruptions from dd2 making enquiries about her friend visiting over the hols, and dj dd1 switching songs every 20 seconds or so then telling me to guess the song 🙄 My poor brain can't do more than one thing + background music at a time, at the moment but my kids seem not to have had that memo.

Some more charms for my friendship bracelets have arrived - tiny bottles for "Message(s) In a Bottle", and snowflakes/shells for "Snow on the Beach". I have no idea what messages are going in the bottles 🤷‍♀️ Dd1 says concert date & location maybe. I thought some sort of nice quote but not thought further yet. I'm most certainly more excited than the kids - I was eyeing up another outfit last night before bed...I do NOT need a fourth choice! It will just end badly 🙈

@EachandEveryone I hope you're having a better day today? I cannot for the life of me remember whether I asked in my post this morning! I meant to 🙈

Lovely puffins Sierra When we went to Bempton was a bit early and could just see a few on the cliffs. These are the ones at Staple Island in Northumberland though think it's closed atm but that was an hour on the island walking with many millions of birds.

We went to Bempton last year to see the puffins, and failed to spot any, but we did get an amazing view of a pod of dolphins swimming up the coast, which felt like a fair swap. And we had great fish and chips on the beach in Brid afterwards.

@SierraSapphire - I forgot to say earlier how pleased I was to hear your news. You must be so relieved.

This thread has lots of nice ideas for wildlife days out or short trips though check seasonality and weather, wind speed if a boat. https://www.mumsnet.com/talk/_chat/4855041-what-is-your-all-time-top-uk-wildlife

Met my surgeon today. Apparently my 30mm tumour in my breast is actually 60mm - so twice the size I thought I was dealing with. I'm wondering if it's grown that much since discovery or was bigger to start with. What are people's experiences with size/growth? I haven't been told the size of cancer in my lymph nodes but I reckon gobstopper size from what I can feel. Surgery is not until 10 August so plenty of time to grow more and maybe spread to other organs. I was surprised to be told they are not taking the whole breast off - apparently 38E is big enough to take the tumour and margins. But then I may need a second surgery if they haven't taken enough. I said I'm not bothered about keeping my breast (I'm 62 so have no need of it and no husband/boyfriend etc to pacify) so in my mind it would be safer/easier to take off the whole thing. Has anyone had experience of this?

Waiting to see the oncologist and enjoying all the puffin pictures.

@1Strawberrycat That is quite a big difference. How did they come to the discrepancy? Was one from an ultrasound and the other from MRI?
In my case there was also a difference (2cm instead of 1.4) but this was a difference between ultrasound/MRI and the actual measurement once it had been surgically removed. I thought it was because it had grown in the meantime, but who knows. It is very difficult to wait and think that it could all just be getting worse. Fingers crossed they are right when they say that a few weeks, even up to 62 days is not enough to change the outcome. As to taking the whole breast, I guess they prefer keeping interventions to the minimum necessary, as it is easier to recover from. The tendency these days seems to be towards de-escalating treatment when there is no evidence that more is better. But, you should definitely raise your concerns and make sure your views are taken into account and that they explain to your satisfaction what they are doing. Good luck and try to hang in there.

@1Strawberrycat - my tumour was measured at 17mm on ultrasound and 35mm when removed. I didn't have an MRI, so it's not directly comparable, but I asked about this and was told it was very normal for them to turn out to be bigger. In my case, I only had 3 weeks between scan and surgery, so it can't have grown that much. On the question of whether it's safer to take the whole thing off, my surgeon said that if a lumpectomy is possible, the main reason to have a mastectomy is psychological - some women simply see the whole thing as 'bad' and want it gone. And I guess you might be able to avoid radio, though you might still need it to the chest wall and collarbone nodes anyway?

Hi @1Strawberrycat on my ultrasound they measured 2cm but at surgery it was 7cm, I don’t think it grew during that time but rather the ultrasound couldn’t see all of it. I asked for a mastectomy specifically, psychologically I felt it was a better choice for getting rid completely,

@1Strawberrycat there is no difference in outcome between mastectomy and lumpectomy with radiation. Some think that it is easier to treat a recurrence after a lumpectomy as there is more tissue to remove but it makes no difference overall.
You will know what feels right for you. I had lumpectomy on each side but I haven’t got a faulty gene.

Red yes that does extremely tough. I Absolutely can't belittle how tough and scary cancer is, at the same time I'm a little overwhelmed with support and kind words. I can't keep up with messages.

It feels odd Because I've been quite ill and really physically struggled with other chronic conditions when not controlled properly. Im quite glad of a couple of mates who have been less fussy simply because they know this is all in hand.

I've had to tell way more people than I'd have liked because of my role at work and because I have young kids.

@1Strawberrycat that sounds very scary, I'm sorry.

They pitched lumpectomy to me as they said lumpectomy and radiation was a bit better (for my cancer) as they could use radiation which is effective at nuking any cells.

But my situation may be different to others' and yours and so the advice contextual.

Could you call macmillian tomorrow?

How are you doing @Florabritannica ? You sounded quite low and downhearted earlier. I’ve been feeling like I am dull company as I have nothing to talk about except how crap my treatment makes me feel. I went out for lunch with friends and one had had lymphoma with IV chemo and a stem cell transplant so he understood very well how grim it is. Later I went for tea with some other friends and felt very drab and uninteresting. The state of my blisters is pretty boring. I am going to try to find some more interesting topics.
Tomorrow DH has invited friends for coffee so a massive tidy up is needed in the morning. And I will ask the guests about themselves instead of talking about myself. Dull dull dull!

Thank you for the puffin pics. I’ve seen penguins in the wild here in Sydney but I’ll definitely add puffins to my list of things to see, though it sounds like a bit of a trek to get there!

I’m half way through my final cycle of Capecitabine. Had some tears on Monday when I just wasn’t hungry but I had to force myself to eat dinner so I could have the bloody tablets. But thankfully I seem to have turned a corner since then and am feeling not too bad.

I decided to treat myself to some new trainers. Ice blue New Balance, they are very pretty. Even the teenagers approve. They arrived yesterday and I went for my first walk since my infusion last week. Felt so reckless I bought a pie for lunch (previously lunch has been a banana or half a bread roll due to my non existent appetite.) And I had a cold ginger beer from the fridge! My infusion leaves me unable to eat or drink or touch anything cold. IT Cold makes me wheeze like Darth Vader, very off putting. It lasts about a week and wheeee it is over! It’s nice not having to put gloves on to open the fridge. And to be able to drink something apart from tepid water.

So if I have any advice to give it would be - buy yourself some new shoes! It might not be helpful for you @TopOfTheCliff until you’re ready to get on your feet again. Perhaps some socks? I’m currently wearing some Fight Like a Girl socks that my kids bought me for Mother’s Day. A good reminder and much better to look at than my sad feet with all the skin peeling off.

Thank you @Ikeameatballlunch 🤣 Great name!

yes I find the onslaught of attention hard too, and some of the too much sympathy. I know find my cancer isn’t curable, but I’m not dead yet, or close.
I much prefer the sensible people who still see me as the person I am. Someone who wants to listen to other peoples problems and share my own. We’re all human, I think contact and talking is very important
And yes, Tourette’s is still a no no to raise in my family. Cancer is much more acceptable

No matter what else happens - there will be a collection in support of Tourette syndrome at my funeral…!

@TopOfTheCliff Thank you for asking - I was feeling Crappy McCrap this morning. Saw the oncologist this afternoon and will be starting chemo as soon as I get back from holiday. Actually feeling better having got a better picture of what’s going on.

1Strawberrycat Sorry your tumour was double what they said before. Is yours lobular. I have lobular and they said that happens a lot where MRI shows much larger than ultrasound, mammogram and also surgery can reveal it larger again. It won't have doubled in size in a few weeks, it will be different scans show from different angles or more clearly. It's quite scary when that happens but treatment generally stays the same.

Re lumpectomy or mastectomy I was given choice with similar sized lump though I am smaller chested around a C cup and I went for mastectomy. But outcomes are apparently the same and also with my mastectomy they did leave a bit. With mastectomy if you don't have reconstruction it looks quite unbalanced and feels unbalanced swimming, you cam get prothesis though and generally get given one free on NHS then buy swimming or additional ones. At first I just wanted cancer out but then appearance started to bug me though I was only offered reconstruction with a delay. Its a long wait around 3 years if they dont offer immediate whereas lumpectomy its put back same day though they said to me from by the arm and back which I didn't like as a swimmer. The lumpectomy is 30% chance of second op needed but its a short 1 hour op for second. Mastectomy was a short op for me but reconstruction is a 12 hour op then another op and I already had 2 operations. Sometimes I think I should have done lumpectomy but when they offered they said it was OK then I queried it and they re examined and found a second cancer and were hmm not sure its still possible, maybe. Though also immediate reconstruction recovery would have delayed chemo so I think I made a reasonable choice, the surgeons said I made a good choice and the best one. Maybe ask the surgeon if it were them what would they do.

Remakes Penguins are awesome, puffins for me are just as we don't have penguins and they look a little bit similar. I do love how they fly superfast though. I saw the penguins in Cape Town on the beach at Boulders Bay and would have been great to see them in Australia but we came in August so we to Great Barrier Reef. I would be with the penguins every day if I lived near there.

Re the scar after mastectomy or similar I am now 1.5 years out and it's hard to see a scar at all. I don't remember being told to massage and never have though they may have told me and it might help. I was told once healed to moisturise though I didn't do much of that either apart from pre radio. The scars do go in time. I was lucky to have a careful female surgeon so had quite neat scars to start with.

Out swimming today and a lady was chatting and she overheard I had cancer before. I got one of those random my friend has cancer stories, apparently her friend had breast cancer 3 times and survived 20 years said like it was a good news story. She was a lovely lady but the thought of it 3 times is grim.

@Silkierabbit I have always wanted to go to Philip Island off the coast of Melbourne to see the penguin parade when all the Fairy Penguins come in from the ocean and waddle back to their burrows. I haven’t got there yet.

A friend has a beach house on Sydney’s northern beaches and I was there for a weekend with friends. The other three are great swimmers and went into the surf. I am not a strong swimmer for big waves so I sat on the beach. And I saw a little shape in the water - a penguin! It was catching the waves in, swimming back out again then catching another wave! I sat there just watching it for half an hour until it decided it had had enough fun and swam back out to sea again. One of my favourite wildlife moments just completely unexpected and natural. I also had a close encounter with a red belly black snake that morning - not quite as relaxing or enjoyable LOL though to be fair it seemed more intent on sunbathing than worrying about me.

Ugh, I’ve really grown to hate cancer stories. I’m learning to stay away from the cancer threads on mn because it brings out the worst in people. Just no bloody filter, makes me rage.