Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@cantbelieveIamhere Hi I looked back at my appointments and I had an MRI 10 days after chemo and phesgo. I dragged myself there and felt awful. Sweated a lot and they were towelling me down as they couldn’t get the machine wet. I should have tried to postpone it which I felt more confident doing towards the end of my treatment. Of course it could mean they don’t have results when they need them . Not sure this helps, good luck 💐

Thanks for asking - still in the middle of it (machine broke down yesterday so hung around the hospital until 6pm - was bounced along today from 9am until 11 - but then got my dose - have to stay on until Saturday to get yesterday’s missed dose).

Genetic results not back yet - was told to email again next Friday to see if they are posted and if so then will have to book an appointment to be talked through them. My understanding is that is good it’s 10% risk or metastasis if bad 90% - nothing in between.

Hi everyone 🙂🙂 Îm back dropped my phone once to often ( especially in the hospital ) and it finally died .. anyway I’ve got a new second hand one
My drains are out. Scars feel tight .. like an uncomfy bra at times. It’s weird cos I sometimes want to itch a boob that’s not there anymore. My tummy ( never that small) suddenly seems bigger as the terrible tits are now flat !! But I feel good, have been out for a walk today and staring to feel less tired. There’s no way Îm having reconstruction. This episode has brought back the regular ‘small’ pains .. blood tests.. plasters.. bruises..and the medication that makes you feea bit sick etc etc you all know what I mean. I’ll do it to save my life but no way am
I putting myself through it just to have boobs lots of love to everyone xxxx

I’m ok ( see above post) 😉
You could look at this in France if you wanted a second opinion: Institut Gustave Roussy . They are very specialized in breast cancer ( ranked 4th in the world) I had a look and they do it in English ( for a fee of course) and by mail if you want . If I can help in any way or you want to chat just send me a private message , I don’t know if it will help but thought I’d mention it xxx

Oh thanks @Sbmpp Disney would be lovely!!! I’ll meet you there next year 😉💕

Fingers crossed for you n the genetic profile. The waiting is horrible isn’t it? Xxx

Oh poor you @Bangersndmash you are going through the mill. How much longer before chemo is finished ? They give you hard stuff when yoûre young ( that’s what I was told) and hopefully it will stamp it out for you and it will all be worth it. But I really really feel for you , it’s a struggle to get through xxx

@Nonamelass actually I was serious! I’ll pick you up at the airport, you can stay with us and I’ll even put chocolates on your pillow at night!!! (Hope springs eternal?)

It’s difficult isn’t it @mightneedalargesnifter? They’ve clearly put in the scan for optimum time for them, but not necessarily you. I think an mri takes a lot longer a ct scan though. Best of luck to you .

iI’m sorry those genetic results aren’t back yet @Connemaraa and that the silly machine broke yesterday - you could have done without that. What a long wait. It’s rubbish that you have to ring to be talked through the results. Fingers crossed for 10%.

I am so glad you are recovering @Nonamelass
and have even been out for a walk. I really don’t blame you about reconstruction - do it for the life threatening stuff but not the “small” stuff. I’m very pleased you are at one of the top institutions in France. If my health insurance will send me to Institut Gustave Roussy I will definitely go! I will ask and message you if there is a chance - thank you for the tip!

be well all of you. Is any one having more treatment today? I have just taken my 11 tablets- I swear I preferred the chemo to this hormone therapy where I just feel aches and cramps all the time !

@Ventress
I don’t know what’s in store for the 2nd course of my treatment plan… I’m fairly sure it will involve more hormone therapy. Îve had loads of tamoxifen and a bit of letrozole so far…plus zoladex injections
Mine seem to be such strong fuckers… periods at 11… menopause twice … still showing up at nearly 60 to 100 percent fan the estrogen flames !!! Hey ho we’ll see what’s in store next

For the IGR ( institut Gustave Roussy) you can ask for a second opinion quite easily and quickly I think (from it says on their website anyway) and then at least you’d know if the treatment you are getting now is what they would recommend Îd hope that would be something they’d tell you xxx

I also just hate all the waiting around, to feel better after an op, for results, for district nurses, in waiting rooms ( arghh waiting rooms) the lying around in hospital.. it’s all a very first world problem and I realise Îm lucky to actually have access to health care but I’m not doing anymore of it unless it’s to save my life or quality of.
Chest is staying flat!!!

lots of love everyone xx

Aww that sounds lovely. Thanks xxx

thank you ladies for your answers. I am going to cancel it and reschedule as I know I wont be well enough, they also struggle now to get cannula in so its not straightforward if you dont feel well.

@Bangersndmash sorry to hear you have had a shit week, you sound like you are really being hammered by chemo. That was me at the start and even with the dose turned down I am wiped out for two weeks especially the filgrastrim injection days. I hope you feel better soon. Antibiotics just add a whole new level of side effects.
I would be the same about phone calls with support and advice out of the blue it would freak me out, in fact the phone ringing does that anyway as its usually the bloody hospital with another appointment.

@Ventress good to hear you have had some rest in your chair. I think your DH is right about ribiciclib.

@Nonamelass hope your recovery goes smoothly, glad that part is over and hope you get time to heal in peace.

have lost a bit more hair but think I will end up just a touch monkish on top which doesnt show unless you send a drone up.

good wishes to everyone on here and thank you for help and advice and a place to rant.

I’m like that over the phone ringing and opening envelopes from the hospital or with any type of results. Or if anyone I love has ro go to the Dr.
I think I’ve got ptsd or ocd…
Send a big gentle hug

Hi everyone !! How are you all? My plasters and bandages are off!! About to go for a gentle walk witha friend in the beautiful winter sun we have here today . Sending best wishes to everyone xxxx

Really pleased for you @Nonamelass! That’s excellent news. We have quite lovely weather here in the south east of England too 😊 I am having trouble breathing although I have another week before my next oncology appointment so I’m trying to see it out with steroids 😊

does anyone else have a really cold face? I have some difficulty coughing and shifting congestion from my lungs. Not sure if that’s part of the lymphangitis issue or not. My blue badge came through though. DH is very happy as it gives him more ability to park locally to the hospital (generally its permit only parking).

our play has finished now. We ended on over 96% tickets sold which was excellent. We had some technical issues on the first night but all sorted by the second. I really wish I’d been more able to enjoy it more.. Next year hopefully 😊

Oh and I’ve been looking at river cruises! Has anyone done one ? I’m still not sure about the insurance situation. We have booked a trip to Sissinghurst (Kent) in June and also a trip to Durham ( for DS’ university mainly) next month, which should be good fun. I really just want to get out and enjoy the decent weather 😎

@ventress sorry to hear you havent been feeling well, one of the few symptoms I havent had is a cold face, usually it gets too hot. Hope you can solve the mystery with your appointment. Is it a side effect of any of the drugs you are on?
Sissinghurst is lovely are you going to the gardens there - so pretty.
I know someone who went on a river cruise in germany and really enjoyed it, its a nice way to see lots of lovely scenery without too much effort, I like the idea of one, I hope you can go and let us all know how lovely it is.

@Nonamelass enjoy your walk but dont overdo it! Its lovely to see some sunshine, I had an adventure and walked to the end of my garden and saw primroses and crocus out along with lovely helebores, our garden is a bog with all the rain so had to put wellies on and walk very gingerly.

I got both my scans moved to later on so that I will be recovered from chemo, if only i had known at the beginning it was so easy, just rang my unit told them i wont be well on those dates and they passed message on and new appointments made - hurrah!

last chemo on monday and I am not going on anything extra until I begin to recover just continue with phesgo and see what happens I have been so very ill with chemo taking me out of action for at least two weeks out of every three - this one has made me so so tired out I just need a rest.

@Nonamelass I’ve been thinking about you. Happy to hear you’re doing well.

@Ventress I’ve just managed to get cruise insurance through ‘insurance with’ so have a look at them!! Where were you thinking of going???

Aww thanks @Sbmpp I think those prayers may have helped .I know I was on your list and another in the states. (my DIL’s family )plus a Caribbean friend’s. I am so thankful even though I’m not a huge believer.💕 I actually started listening to hymns from my childhood while walking to work etc a few months before this diagnosis … for no particular reason other than I just suddenly wanted to… it’s strange.
@Ventress Îm sorry to hear about the blooming breathing hope that sorts itself out asap. Like
@cantbelieveIamhere says I mainly had warm faces wth chemo but I was freezing the night I came out of hospital after this op.DH reckons it was dehydration cos I went to the toilet ALOT ( nightmare !!)
You haven’t got a temperature have you?
A river cruise sounds a good idea , in the meantime can you sit on a comfy chair outside? I did that last week DH moved an armchair just outside the living room window and I sat listening to a book with covers over me. Very enjoyable and decadent !!
@cantbelieveIamhere so glad it was easy to change scan dates … phew !! and that chemo is in part almost finished . It sounds like it was strong stuff . Walk was lovely but I will be careful about not striding around too much. Îm fine (ish) in the day but in the evening I start getting a sort of band squeezing my chest.. it’s the nerves and swelling apparently so I don’t want to over do things and dont’t want any ‘seromas’(?) that will have to be drained etc etc.
@Bangersndmash how are you doing?
Best wishes to everyone xx

Thank you all! I think sitting outside is a very good idea 😊

I like the idea that you have started to listen to hymns from childhood @Nonamelass

The cold face (particularly my nose and cheeks) seems anomalous so I will mention it to the oncologist when I see him. Thank you all. dehydration is certainly an option.

Thank you for the insurance tip @Nonamelassaand @samlovesdilys💐 I hope you enjoy the reading outside. I’m glad are having such good weather. I’m very jealous!

So good that you were able to change the scan dates @cantbelieveIamhereand that chemo is nearly finished. It’s wonderful to get this out of the way. What is next for you? I’m different in the day to the evening too and have the tightening band around my chest. I must admit that I go to bed very early each evening!

Thank you@samlovesdilysI will give them a ring. I am not sure where I would like to go - perhaps Scandinavia or Bavaria? I was reading an article in the paper the morning which has set me off. Where are you going to go? I think Germany is a very good option. I have never been to Germany and it’s definitely on my list!

I’m really looking forward to Sissinghurst. We are going in June which is after DS’s a levels and around my birthday too which will be fun. I just want to experience all that I can 😊

I am going to Italy/Adriatic with DH and kids, and then Norway later in the year for Mums 80th 🤞🤞

I’ve never been to germany or on a river cruise( or any cruise apart from the ferry calais/ dover or across the mersey) it’s certainly something to think about. I need to wait til i see the oncologist in a couple of weeks before we can plan anything much @samlovesdilys your holiday plans sound great.
Have recently seen a lovely french film called’ la venue de l’avenir‘ @Sbmpp @Ventress if anyone ´s looking for something to watch. It was really charming and showed paris now and back when the impressionists were around. There’s a restaurant / bistro in in it called le train bleu that still exists and I have wanted to try for a while so that’s my next mission.. it’s a bit pricey so will wait until I am well enough to properly enjoy it.
@cantbelieveIamhere I think i did overdo it a bit. Got confident and charged around the park in the lovely sun today…and now tonight it feels like I have some sort of metal corset around my chest.. have taken zanaaxx and painkillers and am propped up in bed until it calms down 🤢🤢

@NonamelassThank you. I’ll see if I can find it. During the Olympics I recognized the music from a very old movie I watched in the 60’s. It was “Umbrellas of Cherbourg” I think. My parents were out and the babysitter wanted to see it 😝. I mentioned it to my dh and told him it was sung in French. My parents would have been mortified :). I was in grade school (Catholic) and pretty innocent.
I put you on the prayer list again. I don’t think I would have made it this far without them. Glad you’re resting and you have the painkillers. I had chemo yesterday and I just felt so lousy after that I did the same. Today my cheeks are getting red and sometimes they hurt so bad. Weird side effects. I’m so grateful you are doing well. The treatments everyone goes through are so rough.

Ha have not heard of umbrellas of cherbourg but I think your parents would mainly approve of this film.. it really is quite lovely and whimsical. Sorry yoûve not been feeling too good. Hope you’re on your feet asap and thanks for the good wishes and prayers. I was christened ´church of England ‘ 😉 That’s all down to henry wanting to get divorced .. the pesky royal family again 😂