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.

@TopOfTheCliff How dare that bastard cancer show up anywhere near you again! Depressing you have to go through all the treatment again though. Better start thinking of another post-cancer challenge.

@MrsPnut Good to hear your chest has healed up at long last. Hopefully the lymphoedema will do one!

I've got my breast reconstruction surgery date at the beginning of October. I think they'd overlooked me so I had to chase them up & am a bit annoyed we hadn't done anything this summer as I thought I'd be having the op any time and last year's summer was mired in post-chemo/surgery/radiotherapy bobbins. Still onwards I try to move! Bit worried I'm jumping from the frying pan into the fire, having a yucky side that's flat & scarred going to a scarred abdomen and scarred fake boob that won't match my other one. But if I don't do it, I'll be forever thinking should I/shouldn't I. And I'm trying to be excited about having something on my chest instead of the glaring absence it is currently, and having a scar across my abdomen will at least be a change from the stretchmarked flabby wasteland it is now! Who knows, I might even have a complications-free surgery and get a good end result <clinging onto that thought for dear life>

So sorry Top but glad its not a spread of the other cancer. Urgh chemo again though. Hope its not chemo for too long so you can get back on with your boating adventures.

Glad your results were OK Great

Haunted I have that reconstruction operation to do and very similar feelings. I asked at radio and they were like oh do you want that then the breast nurses got straight in touch and got me an appointment on 15th September to discuss options. Its a bigger op than I thought. But most people seem very happy with results.

I am still trying to get hold of first hormone drugs, asked 3 times and now 2 weeks post radio and no sign. There was a letter to GP today so I sent them an email to see if can get from them though first one supposed to be from hospital. I am at hospital on 1st for prosthesis so can try then though not sure if you can just rock up and get them. Can't say I am overly keen on starting either. No real effects from radio, still quite a bit from chemo but will just see if it goes with time.

@TopOfTheCliff I echo everyone else in that it is s%#t news. I am not surprised you don't know what to think and it's probably better news that you had prepared for? My DM was dx with triple-ve at 65. Large tumour with node involvement. She is still here helping with charity work for the 'old people' 20 years on. She was very fit when dx and I think that helps.

Sounds like the medical staff are looking after you and I wish you well.

@HauntedDishcloth I am very 'on the fence' with having a reconstruction and I can't actually articulate why when 99% of what I have read is very positive. Good for you for chasing. I will follow with interest!

@Top so sorry to read your update and echo what everyone else has said. Relieved for you that it isn't a spread of your original cancer but really not what you want. Sending you love Xxx.

Thanks folks for the support. I love our threads!
@MrsPnut that’s such good news you have healed over at last. When I went along to see my BCN about my swollen arm she had a super new gadget for measuring lymphoedema. It said I just had post surgical swelling not lymphoedema. Readings below 1.0 were normal and readings above were lymphoedema. It was very reassuring to know.
I find cycling hard up hills helps my swelling because of all the panting! It sucks the fluid out of your arms!
Good luck with the sleeve and the swimming. You are really getting somewhere at last.
Top

@Top Sorry to hear about the new occurrence. I have heard this happen to someone else. Wishing you well with treatment but what an absolutely fucker.

i had more fluid drained from my chest yesterday and breathing a lot easier. Tentative release date from hospital of the weekend 😀

I’m sorry to hear your news Top.

Top sending love cancer really is 'the gift that keeps on giving' x

@TopOfTheCliff Shocked at your update - I'd have bet money it would be me back in treatment before you. It's as though we were all in the trenches together and now we're all walking out over no-man's land wondering if and when any of us will be picked off by snipers.

Just thinking - if they are really sure there is no spread and the tumour doesn't need shrinking for surgery - is there really any benefit to doing chemo??

You are mentally and physically one of our toughest but this will be hard nonetheless. Just totally sucks.

@MrsPnut Onward and upward - it's been a mighty long haul!

Good luck to all the GCSE mums on here today! My son had his and did so well, I’m super proud and glad he allowed me to take him for his results no matter how uncool that is. Hope they all get what they needed/wanted.

@TopOfTheCliff I'm so sorry about the new tumour, how bloody crap.
Just popped in as I was looking at threads I'm on . . . am distracting myself through six hours of fasting before I have a PET scan this afternoon. Of course I had a large breakfast, but am now more than ready for more coffee and a snack.
Sending love and good wishes to everyone.

@AGreatUsername Really well done to your son for doing so well and managing all of that whilst you were so ill too, you must be so proud of him. How lovely that you could go too, I went with my daughter 10 years ago now and remember that day so well, even the other two mums either side of me as we waited for our girls to come out, happy memories.

Congrats Great Fine here as well, relief that is over.

Hope you can escape hospital soon FooFooyeah

Hope all goes well this afternoon. When I had a PET scan years ago they shut me in a room with Ken Bruce (playing on the radio) during my enforced entrapment, punishment indeed.

@TopOfTheCliff just to join the general cacophony of how shit and unfair it is to be re-diagnosed with cancer. Yes you must be gifted and special indeed. And I don’t blame you for not knowing what to think about it.

I was really interested to read @Silkierabbit explanations of the different models now used to decide if you need chemo. I was also surprised they would do chemo before a lumpectomy if the tumour is so small. When I first had cancer 11 years ago and was premenopausal no question about chemo even though I had a mastectomy and there was no lymph node involvement. They pumped me full of the stuff. I was so ill from it I couldn’t complete the course. & they didn’t even know I was BRCA+ then. So I’m wondering whether it was all pointless but that’s a …pointless … thing to wonder so many years later. Anyway given I am BRCA+ & the bastard thing came back 11 years later when I was least expecting it I feel like I have a massive flashing neon sign saying “cancer” on my forehead, and you must too Top.

Those models sound great though to avoid needless chemo or help patients understand the likely risks of having it versus not having it and decide for themselves.

@TopOfTheCliff what a bastard fecker! So sorry you have to go through it again. Reoccurrence is a bastard (I am rather fond of the word as far as cancer is concerned, yeah). Are they planning to give you a PET/CT/bone scan? I had to go through CT and bone scan when my bastard reoccurrence happened. Keeping my fingers totally crossed. What was your first BC - was it ER/PR+?

@Bloodybridget how did the PET scan go?

I am in the middle of a shitstorm ride with DH and his GBM4. I don’t even know who I am anymore. GBM4 is one of the top bastard cancers around. DH’s latest hospitalisation (he is back home now) left him almost in a coma. And he now has to use a walking stick. Gets confused. Angry. Irritable AF. Has said some really hurtful things to me that I just have to suck it up as there is no point in discussing anything rationally with him anymore.

Giving everyone else a massive hug - you are all still on my mind and I do keep on lurking around. DH’s GBM4 has broken me more than both my 2 bouts of BC.

Ah @balkanscot I was wondering how you are getting on. Thanks for the sympathy when you are going through the mill. Keep plodding forward with us willing you onward.
I think I must have accidentally signed up for a Buy One Get One Free cancer deal.
My first was triple positive grade 3 and upper inner quadrant so chemo first to nuke it. This one is triple negative grade 3 and upper inner quadrant so the surgeon wants it nuked to make his job easier. At least I’ll have matching pert uplifted boobs for Christmas.
I’ve had a fab day test driving ebikes and kayaking on the Dart. I keep coming across friends who expect me to be sorrowing and downbeat but I’m not. I’m wringing as much fun out of the summer as I can before the horror begins again. This weekend we are off bike packing on Dartmoor. Next week I’m organising a big Regatta party. No time for introspection or bitterness. Why not me?
Sending love to those struggling.
Top x

@balkanscot it went fine, thanks for asking. A different scanner from when I had a PET in 2020, this one only 3 months old, I was told. The technology is awesome and I feel very privileged that I can benefit from it, free at the point of delivery, on the NHS.
Am beyond sorry about your situation with your DH. As with everyone else here who's getting much more than their fair share of crap, I wish I could magic it away for you.
@TopOfTheCliff have a good time with biking and partying, you flipping legend! Here's to the perkiest tits ever!

@balkanscot Ive been wondering about you too. I’m so very sorry your family is dealing with such awful things. It must be beyond heartbreaking for you. How is your son coping with it all? (Sorry if I’ve got that wrong, my memory says you have a son but to be fair my brain fog is thick so I could well be wrong!)

I’m not actually sure what a PET scan is! Sounds very snazzy though.

I’m 15 days from chemo one (taxol/carbo) and shedding hair big time. I had a really very distressing shower yesterday with it. I cold capped and I know this is normal, and so far my hair looks the same despite the huge amounts falling out so I am holding out some hope. All my other body hair has buggered off though which is actually very welcome and pleasant. Eyebrows and eyelashes remain unchanged for now. Long may it continue.

I wonder how @Chicagocubs son got on in his GCSEs. I do hope Kathy will come back and tell us. It must be hard for them all without her.

@AGreatUsername I hope you hang on to lots of hair. I found that stage so painful I just chopped all my hair off then shaved my head.

Today I met the bright young oncologist who works with my DD. She wants me to have 4 x 2 weekly EC followed by 4 x 2 weekly paclitaxel. I can have a port and she reckons this combination will be easier than the FECTHP I had last time.
She is going to get my tumour sample tested for BRACA genes on the NHS and nothing was too much trouble. I will have a heart scan before starting but my fitness helps a lot. I should be done before the end of the year.
I am quite sanguine about this plan. It is quite surreal but it just needs to be done now.
Tonight I have told DM about the new diagnosis which was hard. She wishes it was her not me. I don’t! I’m battle hardened now and know what I’m in for.
DH is actually looking forward to giving me the filgrastim injections again, he liked that.
We are going to take off for the weekend and go bike packing on Dartmoor. I want to wring as much fun out of the last days of freedom as I can.

@Bloodybridget I hope you don’t have to wait too long for your scan and @thereisonlyoneofme I hope you have your results and they are good.

Have a good weekend everybody
Top x

@AGreatUsername horrible isn’t it. I’m sorry & hope it’s not too traumatic for you. 15 days after - you’ve got through it so far, kudos to you. agree body hair fucking off is a result as am too lazy to shave.

i was ‘lucky’ in that my hair started falling out immediately but just got thinner & stayed around for ages — I’ve been on chemo since April. In June I cut it short myself with my sewing scissors one night slightly inebriated, like fuck it why not. & amazingly it looked ok for ages.

Now it’s barely there, I look like a baldie twat & considering braving the shave but don’t want to freak DD out!

I wear a lovely very big hat when it’s hot & sunny in public; my scalp doesn’t get fried. & great in the sea & beach as I dunk it in then wear it to cool down. & a variety of jazzy scarves and turbans. I find lipstick often makes you feel better too. Strong look.

@balkanscot what terrible undeserved unimaginable pain for you & your family, I am so very sorry.

@TopOfTheCliff I am so here for your biking and partying! I feel inspired. Have a great weekend too.

@Top I was also wondering about @Chicagocubs's son and hope Kathy will come back to update his son, so very hard for all of them. I'm pleased you have a treatment plan in place, easier when you know what you're dealing with. Telling your DM must have been very hard, I hated telling people of my diagnosis and felt I was letting them down, I still feel that to a certain extent.

@mowly77 I was never brave enough to shave my head. Adult DD cut my hair really short all over when it was falling out, it made it so much less painful than it had been when it was longer. I wore some cheap turbans I'd bought on Amazon for the winter then over the summer when it was growing back, a wide brimmed straw sunhat which I thought looked ok, the only problem was its tendency to 'lift' in any breeze and the thought of anyone other than DD seeing my bald head was a disproportionate worry for me. I would answer the door to neighbours in it which felt odd at the time but was the lesser of the two evils.

I swore a lot and cried on the hills but I pedalled to the top of the moor before dark on a very heavy bike and put the tent up! Now consuming Jail ale to numb things before sleeping on the hard ground. I’m not quite sure this is my idea of fun. 🙄

Wow Top that’s a tiny capsule of a tent , a pod if you will. Hope you sleep well, what an adventure!

most adventurous thing I did today was go for a short walk to look at the amazing clouds / last light over the sea. It did include a posh cocktail in a tin too