61151members
322419posts
cancel
Showing results for 
Search instead for 
Did you mean: 

February 2019 chemo starters

Member

Re: February starters 2019 - yes, we rule!

Hi Sarah yes I was thinking about delaying the r/t.  Susie mentioned it yesterday too.  To be honest I think there's prob about a 6 week gap anyway so I should be ok.  Think I am looking too far ahead all the time and just getting myself in a panic. Just need to deal with one thing at a time and not let everything get on top of me which is when I start thinking I've had enough of everything.  My boob may change size after r/t so I suppose I cant rule more surgery out but at the moment Im not that bothered by it being a different size and most people say that you really cant tell unless you study it in detail.  I would also like to lose some weight first so that may shrink good boob even more.  Will just wait and see. x Have a great weekend

Member

Re: February starters 2019 - yes, we rule!

Good morning you lovely lot

 

First of all, really glad you managed to escape from Alcatraz, Nettie!  Hopefully now you are home, you will rapidly start to feel better.  Are you still hoping to get away this weekend?

 

Now let me have a quick catch up on what else I have missed since I was last here.  Lots by the look of things!

 

Daisydi.... I'm glad you enjoyed the LGFB sesh.  Fun isnt it.  And all those freebies!!

 

As for your chat with the doc, I swear they train them to do that "I don't know what you are complaining about, other people have it much worse" thing!  Mine was the same when I asked if I could have a dose reduction with subsequent T treatments after I had such a bad time with the first lot.  He just told me how much worse it could have gone, refused to lower the dose, and kind of made me feel like a whiny brat!  Ho hum.  Although I guess I have to grudgingly agree he was right as my second T did go more smoothly.  Like you I'm not looking forward to doing it all again next week for round 6, but at least it is the last one. 

 

If you are worried about going straight to rads while your skin is still playing up, maybe you could ask for a longer gap between?  I went for my rads chat yesterday with the onco and he gave me a lot of choice with the start date.  I went for the earliest offered as I want to get it over with, but I could have delayed it for a few weeks if I wanted to.  So I guess there is no huge rush from their end, medically....

 

As for the evening-up surgery, if you can get away without it, visually, then I don't blame you for not being in a hurry to get back under the knife!  But I absolutely can't wait for mine.  I can't go outside in just a t shirt as things are at the moment, as even with quite a baggy t shirt on I look so weird and lopsided and it makes me so self conscious Smiley Sad  so I have to wear a jacket or a hoodie all the time and as the weather gets warmer that is going to be horrid.  When I had the lino put down in the new bathroom I was wearing just a t shirt (well, and trousers! Smiley Very Happy) and the lino guy couldn't stop staring at my mutant boobs and pulling confused faces.  I can't wear any normal bra, and am sick of wearing the same 2 post surgery bras in rotation.  And if I catch sight of myself in the mirror after a shower it depresses the heck out of me as I look so wrong! 

I'm due to have it all sorted in August or September and I'm so looking forward to it!  Crazy to look forward to surgery I know.  But it feels like it will be the first stage to getting "me" back after all of this....

 

Edinbird, I'm glad your work meeting went as well as it could have, well, as well as it could have without letting you off the interview hook entirely anyway.
At least it sounds like they are trying to be as reasonable as they can without derailing the entire process.

 

Sorry about the wine drought this weekend though! 

I did try to have an alcoholic treat last weekend in Leicester - I had a raspberry daiquiri in TGI Fridays.  But honestly they can't have put more than a teaspoon of rum in it, I couldn't taste a thing and I got no "buzz" from it.  And usually the first sip of anything sends me tipsy as I drink so rarely I have zero tolerance.    It just tasted like a slush puppy from the beach Smiley Happy

 

Rosina, you have inspired me to make up a batch of soup this afternoon.  My soup maker has been neglected the past couple of months.  My favourite is sweet potato, leek and tomato with a  couple of sticks of celery and a chilli thrown in for a little extra oomph.

 

Marlyn I'm sorry the rads are giving you so much gyp Smiley Sad  I had my pre rads chat with my onco yesterday and he drew this little diagram that confidently said no side effects for the first 2 weeks, then dryness and soreness building up over the next 3 weeks, peaking a week after it is all over.  I mentioned to him that you are already really sore after 5 or 6 sessions and he looked a little caught out.  I hope you can find a lotion or potion that will ease your discomfort.  He said to me that it is all about keeping everything well hydrated....   

I have already got a pot of Aveeno handy as I had read that chemo dries the skin out too.  And I'm allergic to lanolin so needed something lanolin free.  

 

Ocean - I'm exactly the same with wondering why I have had to go through all this horrid chemo when after my lumpectomy I was informed that all my margins were clear and I was "most likely completely cancer free".  It is frustrating knowing that maybe we are suffering all this horrid additonal treatment for nothing!  In my case the doc told me to view it more as an inoculation/ insurance against it coming back, as my oncotype DX result (likelihood of recurrence without further treatment)  was quite high - 34 .  Apparently if I had scored under 20 I wouldn't have had to have chemo, just rads.  Ah well.

 

As for eating healthily, I have struggled to do so throughout chemo as I have had very odd food cravings and weird taste changes.  Carbs and cheese have been all I can face, plus, luckily, fruit still tastes good.  So I have put on a bit of flab and I know I could have/ should have been eating healthier.  I do thoroughly plan to go back to eating much better once the chemo cravings are behind me.   Don't think I fancy full keto, but I will definitely look into a way that I can adapt my usual veg heavy "good" diet as close as possible to the recommended "avoiding cancer" diets....

 

Glad you have now told your children.  Must be a relief in a way.  I told mine early on and they took it well, just all immediately asked for a reassurance that I wasnt going to die.  I said I wasn't planning on doing so, no.  And then they just kind of moved on and talked about other things.

 

I think my youngest takes it the hardest as he is only 16, and it has just been me and him since his dad left when he was 5 and his older brothers moved out a few years ago (my current partner doesn't live with us).  Also as he is the only one still at home he is the only one who has seen me suffer on my bad days with chemo and he has said that really upsets him as he has never really seen me struggle with anything before. 

I do worry about how it is affecting him, which is the main reason I've been paying for him to have fortnightly counselling sessions for the last couple of months.  That way I know that he has a safe confidential place to discuss his fears.  And it turned out that, completely coincidentally, his therapist is a BC survivor herself, 10 years clear and counting, so that I'm sure helps.

 

I think that is me caught up on yesterday's/this morning's posts.

How are the rest of you, the quiet ones?  Hopefully ok x

Any fun weekend plans?

 

I'm planning to have a mainly lazy weekend as I'm still pretty wiped out from last week walking around Leicester relentlessly, and a tough work week.

 

Also had a busy, but productive, day yesterday.  I thought I was going to have to work (on my day off! Nooooo!) But thankfully the client never got their act together to send the data over for their terribly urgent job so we didn't have to do it after all.

 

That freed up a couple of hours for me in the morning to work on Peggy, getting there:

20190531_213618-picsay.jpg

 

 

Also I had time to run some errands and call the Maggie's centre to get myself booked onto their next "Where now?" course.  This is a post cancer treatment counselling course, 2.5 hours every Tues evening for 6 weeks.  I assume it is similar to the Moving Forward thing that MBJ did via Breast Cancer Care.  The one they have booked me onto starts in September so that suits me as I should be finishing up the bulk of my treatment in July/August.

 

Then in the afternoon I went over to Oxford to see my onco.  It turns out I *am* doing 4 weeks rads, not 3.  He had spent the whole hour saying I was doing 15 sessions, then at the end he asked if I had any questions, so I said "how come now it is only 3 weeks when originally you told me 4?", and he then said... "you know what? I think it is 4....  you only had a lumpectomy right?  Not a mastectomy?  Maybe I should have re read your notes!!"

Duh.  Yeah.  Maybe!

 

So - a bit disappointed I do have to have 4 weeks after all (should have kept my mouth shut!! Smiley Very Happy) and also worried that my onco doesn't seem to have looked at my notes for months....  but otherwise at least I now know more about what to expect from rads etc.

 

I asked him more about the funky no tattoo machine they have.  Apparently the dot tattoos were used to triangulate position, to make sure you are all lined up perfectly.  But this new machine uses a kind of similar software to facial recognition tech, so instead of lining you up on 3 points, it learns what I look like when I am in exactly the right position and only gives a match when I am lined back up just right. 

They've had the new machine a year and are really happy with it apparently.   That isn't too bad.  If it was brand shiny new I'd be more wary, I don't want to be a guinea pig!

 

Then yesterday ended in a bit of a panic as we found out my fella's dad had a mini stroke and called himself an ambulance in the afternoon.  By the time the ambulance arrived he was feeling better but quite rightly they took him in anyway and kept him in last night for observation.  He is apparently right as rain and in good spirits this morning and determined to talk the docs into letting him home today.  We will go to see him over the weekend and see how he is getting on. 

 

Take care all

Sarah x

Member

Re: February starters 2019 - yes, we rule!

Maryln our posts crossed.  Ive been using Aveeno for quite a while now since my allergic reaction to the surgical dressings used after surgery which seems like a lifetime ago. It does make the skin really soft and non greasy. Hope it works for you xx

Member

Re: February starters 2019 - yes, we rule!

Morning Ocean 21 and all.  Thanks for that book recommendation.  I have just ordered it from Amazon.  I am glad that you have had a nice time with your children and that you have managed to tell them about your bc.  Must be a great weight off your shoulders.  Whenever I see chemo nurses and say I dont want any more I feel so guilty as they are only trying to help but I really really didnt want chemo and I suppose I am just waiting for someone to say ok then you dont need to have it, which wont happen!  Only one more to go so will just have to go with it one last time.

Such a beautiful day here so may try to cut the grass.

How are you feeling Nettie and Maryln. Hope you are ok and that everyone else is out and about enjoying our mini heatwave.  Love to all xxx

Member

Re: February starters 2019 - yes, we rule!

Ocean, 

you summed it up for me ref chemotherapy. I had a small tumour...they got clear margins and no lymph node involvement, so I really struggled with the decision, it's such a huge life changing thing. I'm now 6 weeks post last cycle and still suffering side effects, especially the clumsy fingers.....i don't even want to allow my mind to wander off to the what ifs and buts....I'm trying very hard to be in the moment, I know we all struggle with this and that bc will always be lurking in the background....

 

Anyhoo....just want to share my experience with rads. I've been slathering on E45 cream twice a day ( on both boobs and underneath boobs) after my 5 th session I developed a nasty rash/burn under my right boob ( my lump was in the outside area of said boob) I of course mentioned this to the rads peeps and they suggested the E45 was perhaps a little too oily and that I hadn't rubbed it in sufficiently....so in essence the rads were hitting the oil and " cooking" the area? This was the theory anyway.....I later spoke to my chemist who couldn't rule this theory out, so I now have aveeno ( oatmeal based) and will see how I get on with this....so the upshot is....make absolutely sure the cream absorbs nicely and try and get a cream that isn't "too oily" difficult! As they all contain lanolin or paraffin wax....the chemist said if it didn't heal ( I still have another17 rads to go) the gp will prescribe a silicone gel which acts as a barrier and will help heal the area too...

 

so there you go! 

 

I hope today brings nice things for us all and if it can't then at least some lessening of side effects will be a Bonas...

 

take me care my precious ladies, I love you all xxxxxx

Member

Re: February starters 2019 - yes, we rule!

Morning lovelies,

 

Just been catching up on your news. Sounds like there’ve been some challenges.

 

Glad to hear that you’re home Nettienoo.

 

Trixie  how are you doing? Improving I hope.

 

Daisydi , totally understand that feeling of absolutely not wanting the chemo but having it anyway.

In a way I resent having to go through this, why my boob?! Me the woman who’s spent her life doing all the right things healthwise being told that it’s ‘chance’. It is difficult to reconcile things sometimes

.

MBJ , I don’t  think any of us know with absolute certainty that we’ve made  the right choice. I had my lumpectomy and before my second session of EC when I saw the dr she said my scans show that I’m clear . Apart from disbelief my other reaction in m6 head was ‘ if I’m clear why were you all advising chemo?’ I still struggle with that.

 

The dr spoke very good english ,when we were on our way home I had such a sense of disbelief I actually asked Tim whether I’d imagined that she’d said I’m clear. He always comes with me to appointments and he said no I hadn’t imagined it . He’s always been very  keen for me to have chemo a# he lost his mum to bc  so for him and the kids I continue.

 

That’s not  to say that throughput I haven’t been extremely conflicted , I do worry about what chemo is doing to my body overall. I really didn’t want to go through with chemo but I am doing and trust me before each session I have a  a moment of being thoroughly p*ssed off at being there and not being courageous enough to say ‘no more’.  I think we’ll all have to find a way of being compassionate with ourselves and learn to trust our bodies again. Easier said than done I know but we must do it.

 

Have a look at a book called ‘ The Metabolic  Approach to Cancer- integrating deep nutrition, the ketogenic diet and non toxic bio- individualised therapies.’ by Dr Nasha Winters and Jess Higgins Kelley. Winters had cancer about 25 years ago. I found it a really good read and it’s  got 10 health surveys in the book for people to do. They call the surveys the terrain 10  and there’s guidance on what to do for each terrain. You can interviews with Nasha winters talking her  work and her journey on YouTube.

She’s a naturopathic doctor and her insights gave  me a great deal of food for thought at the beginning of this journey.

 

Dr William Li did a Ted Talk that you might find interesting. It’s called ‘ can we eat to beat cancer?’ Going forward , although I’ve started already , I know that for me continuing to be very mindful not only of what I eat but also the quality of the food I eat is going to be part of my healing journey. 

In the West I really do believe that our food chain has become very industrialised with great reliance on chemicals and in some ways are body’s pay the price. All a bit hippie trippy if you don’t believe in such things but it’s one of the reasons I’ve always been into gardening. When you grow it you know what you’re eating. We garden organically, apart from occasional use of slug pellets !

 

In other news. I’ve now told my kids about what’s been happening. They’ve been wonderful but as I expected my youngest took it the hardest. I was completely right to wait to tell the youngest two face to face my daughter said as much. I must admit that I felt dreadful telling them, like I’d let them down really badly. For years until I met Tim it was just me and them against the world. I’ve always been their biggest cheerleader and backstop and it feels like the bc sh* t has thrown curve ball to that. Have had a couple of low moments beg of that . Has anyone else felt bad after telling your children?

 

My son has flown back for work but my daughter is still here. Even though I felt super stressed in the build up to telling them it’s been a great boost having them over . It’s also great that I’m not going  to have to be constantly watching what I say so I don’t let the cat out of the bag.

 

Have a restful day whatever you’re up to. Got some pics for your but it’s not loading them for some reason will try again in a bit.

 

xx

 

 

 

 

 

 

 

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Hi Nettienoo 

Good to hear you're back home. Hope you feel much better soon. 💐💐💐 

Member

Re: February starters 2019 - yes, we rule!

Welcome home nettienoo, rest up Hun......hope tomorrow is a better day for you and for us all xxxxx

Member

Re: February starters 2019 - yes, we rule!

I’m home. Still not 100% so off to bed. Xx

Member

Re: February starters 2019 - yes, we rule!

Yes it's tough Daisy and I think I found 5 the hardest as you're nearly at the end, but not quite and then afterwards having to psyche yourself up for the 6th. As you say though, for your own peace of mind, if you can have the last one, that would be good x 

Member

Re: February starters 2019 - yes, we rule!

Marlyn, sounds like you're having a day of 💩 news today. Going for rads is bad enough, but a double dose that's the pits. Your final day is going to be so looooooong☹ if you have to travel a long way. Hope your boob improves over the weekend. Take care xx   

Member

Re: February starters 2019 - yes, we rule!

Marlyn yes it’s osteopenia my dad has it... so I was worried about my bones through all this but they just said they’d test and deal if needed. I considered the zoladex injections to stop my periods definitely to then give them a better chance of coming back but the doctor said they were not nice and the menopause symptoms I’d get on top of chemo could be pretty bad so I just decided to let chemo take its course. You get infusions, the first one my dad had made him feel like he had flu for weeks but after that they weren’t too bad. Not sure how many or how long and his were a few years ago not related to his prostate cancer so no point worrying about that your team will tell you what you need.

 

So the hospital calls up to do the checks. Answer all the questions. See you at 11 on Monday. And were my bloods back I ask? No not yet. We’ll call you if any issues. So I guess I’m the same as last time assume it’s all ok but actually have no idea!! No wine for me

Member

Re: February starters 2019 - yes, we rule!

Hi daisy,

just back, the chemist advised on a gel that my gp could prescribe me, but to first try a week on aveeno and see how I get on with that...so I got the biggest bottle in the shop and fingers crossed that will sort me out... she also mentioned aloe Vera.....so it looks like your well tooled up....can't imagine how me boob will look in 16 sessions time?? It's already " lifting up" look quite perky really...feel sorry for the other one all droopy ....lol...xxx

Member

Re: February starters 2019 - yes, we rule!

Maryln Ive got some Aloe Vera gel and Aveeno ready for r/t.  Think they are non oily.  Let us know what the pharmacist says. xxxxx

Member

Re: February starters 2019 - yes, we rule!

Thanks Jencat. I will probably go ahead with the T just dont want to!  I am not a giver upper and if anything happened in the future I would never forgive myself.  The thought of another FEC fills me with dread too!  Think I am just feeling sorry for myself at the moment as this chemo just seems relentless and I think my body has had enough. I will do this!

Member

Re: February starters 2019 - yes, we rule!

 

Hi Daisy, I'm from the Oct'17 thread. Just been reading about your dilemma with having your last. T. I'm pretty sure that Shi from my group had problems and had FEC for her last chemo. Wondered if that might be an option for you rather than stopping chemo altogether-Shi's often on the different threads, so hopefully she might be able to tell you x

Member

Re: February starters 2019 - yes, we rule!

In bed listening to this. Resting 🤗

Did not do my stretches this morning.

Hope to walk later.

A US Marine talks about yoga

Love, 

Rosina

p.s he is so down to Earth 🙏

Member

Re: February starters 2019 - yes, we rule!

Back from rads, with a truly sore boob, they advised me to buy a " non oily " cream....so will be asking my chemist what they advise.....Also...it seems that cancelling a rads appointment will only result in a double dose on another so, so on my last session I'm to go in first thing then again last thing....oh poo!

to add to my wonderful day, I got a phone call from my gp to tell me I have the pre cursor to crumbly bones (!) it's called something like...osteopenia? Soooooo another shed load of pills to pick up ( this is the one where you have to keep an eye on your jaw bone) oh heck!

 

implausible...mentioned about the rads your getting, he said there's less faff and it's all pretty state of the art stuff...he seemed suitable impressed! 

 

Well, im off to the chemist to flash me boobs....love you all xxxxx

Member

Re: February starters 2019 - yes, we rule!

Hope you get to drink that wine Edinbird 🍾🍷🥂☺. Susie xx

Member

Re: February starters 2019 - yes, we rule!

Bloods are done... came out good for this early in the morning! Won’t go off any earlier than last time though so I’ll ask about the liver function when the hospital calls and hope they know. If it’s good then wine later... if they don’t I can’t risk it.

 

Will let you know what they say later xx

Member

Re: February starters 2019 - yes, we rule!

Morning everyone 

Edinbird, looking forward to hearing about the AA truck fiasco when we have the grand meet up. I'm intrigued. Glad the work meeting wasn't as bad as you expected but it's a situation you could well do without.  

Implausible you only need to rub 2 or 3 drops of caster oil into your hands (it's concentrated) and that's plenty for scalp, hair, brows and eyelashes. It also takes care of the nails and cuticles too. I'll let you all know if I think it's made any difference.

Nettienoo hope you escape from hospital today and get to go away for the weekend. Also wishing your daughter a speedy recovery.     

MJB I'm with Implausible and Nettienoo and see if you can talk to someone who may be able to put your mind at rest regarding you decision to stop chemo, or at least help you put everything into perspective.

Hope everyone is coping ok. Take care  xxxxxxx. 

Member

Re: February starters 2019 - yes, we rule!

Good morning everybody,

 

Edinbird, thanks for the update - that sounds a bit more positive on the workfront. 

 

Daisy, such difficult decisions we have to make with this barry BC. I can totally understand your reluctance to carry on when you've had so many ill effects. Take your time and do what's right for you. On the plus side, sounds like the LGFB session was a success. I'm finding it most useful now that my eyebrows are nearly all gone. Also thanks for the tips on where to visit in Norfolk. We nearly stayed at Wells but found a nice guesthouse here in Sheringham. Will try to incorporate a visit, or if not, will plan one in the future.

 

Rosina, sounds like you're doing OK so far. I felt more in control during this cycle as I knew what to expect. Hope you don't suffer too much with the SEs, or preferrably, not at all.

 

Have a good day everyone.

 

Sar xxx

Member

Re: February starters 2019 - yes, we rule!

Hi daisydi 

Happy to hear you enjoyed the LGFB session, they really are a morale booster. I had never pencilled in my brows before this bc but now it's part of my daily routine and like to think that practice makes perfect. Haven't tried eyeliner since and mascara covers my eyelids beautifully☹ as I still haven't got used to shorter and thinner lashes. For that I use clear mascara which I have worn regularly in recent years. As for the chemo, try and hang on in there, you've only got one session left. I know it's difficult, especially when you haven't got the advantage I had of actually feeling the results of what each session can do to the bc. As for the rads could it be delayed a while until your skin has improved? Making decisions is difficult at the best of times but when you're not feeling 100% right it's even harder. Take care. Sending you hugs ❤❤❤❤    

Member

Re: February starters 2019 - yes, we rule!

Hang in there Daisydi,

you have got this.

 I made my own concoction last night to drink: 

raw cocao powder , dissolved in hot water to which I added a spoonful of molasses and topped up with soya milk. I zapped it in the microwave and had it as a bedtime drink.

Delicious.

 Thanks again for the link, I did have a look. Lots to choose from.

 I am back on my soup.

My own concoction yesterday: 2 small sweet potatoes chopped, sauté spring onions ( bunch) , 2 small red onions, 3 cloves garlic and a handful of chopped parsley. Sauté in olive oil. Add bag of spinach plus chopped up asparagus tips. Some veggie stock ( liquid) then blend. Add black pepper at the end to taste.

We all enjoyed it and Mum said it was better than what you get when you eat out 🤗

No side effects yet from my #5 T dose but it’s not day 4 yet so I am gearing up for it.

Adding a powerful mantra for everyone to listen/chant to

its called the Gayatri Mantra ( a mantra is a ‘mind tool’) . I have learned it by heart and I had it running through my mind yesterday: 

Very powerful mantra

Member

Re: February starters 2019 - yes, we rule!

Good luck for this morning Edinbird.

Keep the fluids up.

Very pleased to here your news re. Work interviews.

Everything will be well.

Rosina 🌻

Member

Re: February starters 2019 - yes, we rule!

Hi all xx

 

Sounds like most are feeling at least a bit better, fingers crossed for 💩 or common sense Nettie! Daisy I don’t think I could cope with cutting chemo but I don’t have many options so it’s different for me. Susie they surely can work out what’s in your lump this time they’ll have far more to test.

 

I haven’t felt or been sick once during chemo but yes my stomach has caused plenty of discomfort the other end on or off...! The AA truck fiasco was years ago after going to Spain not recent but it’s cringey and hilarious in equal measure. Maybe I’ll save it for our grand meet up it’s best told in person. But it’s probably the most humiliating thing that’s ever happened to me.

 

So... meeting... at least it was to discuss things not tell me, I could give my input. They wanted to interview me wc 17th but given all my appointments the previous week and not knowing the outcomes I’ve asked if it can maybe be the following week. Unless I get some serious delayed side effects I should be ok. Everyone is going to get the presentation to prepare ahead of time rather than with 30 mins! So people may have amazing presentations but my brain couldn’t cope with such little time. They said I could do the interview wherever I wanted and even over two days. Everyone else will be getting interviewed next week.

 

After calming down yesterday I feel better about this. Was able to talk about the other positions and options. I’m not going to stress about it just do my best and I’m not going to be left without a job. I’ll have time to prepare and I should be feeling better and at least it’ll be done. Fingers crossed for good news at the appointments of course.

 

Only did a mornings work but wasn’t fussed for this afternoon. I need a good sleep but was distracted so took bestie to get his prescription and then had a big pizza. Would love a lie in but I have the delights of bloods at 8.40am tomorrow!!! Only time I could get. At least it’ll be done early. Then I have a two hour meeting in the afternoon so it won’t be hard to make up my hours tomorrow.

 

Will have my alarm set to start drinking... last one though! 😁🙌🏻

Member

Re: February starters 2019 - yes, we rule!

Hi Implausible 

The tumour, or some of it will go off for biopsy after surgery. Hopefully there'll be enough to establish if my bc is HER2 positive or triple negative the same as Edinbird's. At the original biopsy they couldn't tell and the same result  could be the same. If it's positive then I'll have Herceptin and more chemo and radiotherapy as required. Otherwise it'll be just chemo and rads. If it's still inconclusive I haven't a clue🤔.

Love the Peggy story. xx   

 

  

Member

Re: February starters 2019 - yes, we rule!

Hello everyone.  Been to the LGFG session today and got some nice freebies and came away with eyebrows drawn on properly and also managed to cover up my black eyes.  I did look fairly decent for a while and then I went to the onco centre to see one of the drs about my reactions and asked whether I could stop at 5 and not have any more T.  She said its my choice but some people have much worse reactions where their skin actually peels away.  My concern is that I am covered in spots mainly on my chest and bad boob and my skin will just break away during radiotherapy.  One of the ladies there today had finished her radiotherapy last week and her skin was so red and sore.  She said I could delay my last T for a few days if I wanted but I cant decide.   Half of me cant face it again but the other half thinks its only 1 more and that I should just get on with it.  Will make my mind up next week when I might hopefully feel like a human being.  I cant actually eat anything decent as this chemo seems to have affected my gut and anything decent just goes straight through.  I havent even been having my superfood shake.  Rosina the company is called nutriseed.co.uk and they do all sorts but mine is called Total Superfood shake.

Sorry that you are locked up again Nettie.  Hope you get home soon.

Seaside I love Sheringham but if you get the chance go up to Wells/Holkham.  It is my most favourite place in Norfolk (beach wise). Glad that little Lexiison the mend

Implausible I think I only have 15 r/t sessions.  My planning is on 12th July and my last session is on 12th August. I dont think I want any more surgery to even me up. I am supposed to be having 2 areas done as well. Maryln I hope today was better for you.

Edinbird let us know how your meeting went.

Hope everyone else is ok.  xx

Member

Re: February starters 2019 - yes, we rule!

Nettienoo hope your feeling a bit better, I've been lucky compared to you and Edinbird on this scale at least I had no sickness and the imodium actually stopped it so i could get to the hospital although having to carry a full change of clothing, wet wipes and so on but it was well worth it as my scan on my boob showed no scary reasons for my pain apparently normal, although still not well today but had a lovely visit from my son and my sister xx Hope your daughter recovers well xx

Member

Re: February starters 2019 - yes, we rule!

It’s Okay Daisydi, 

I did a search through the posts and found the Nutriseed shake.

will google it now

Member

Re: February starters 2019 - yes, we rule!

ah yeah I remember we talked about fish oils before - because I had to check that the Perfectil ones didn't have fish oil in them due to being a vegetablist , but as far as I can tell they are fishy free Smiley Happy

Member

Re: February starters 2019 - yes, we rule!

Marlyn you have just made me chuckle as my husband has said exactly the same about me “advertisers dream”. I get reeled in so easily. 

Susie, you did the right thing by getting out in the garden. It’s where I head when I’m feeling down. Just the fresh air makes a difference and you have a lovely garden. Your hair has grown so much since you last posted a pic. It gives me hope. I have a bit of fuzz and resemble a coconut at the moment.

I am going to get some of those vitamins put away for after chemo Implausible and thanks for explaining about Peggy. 

Trixielady how is your tum today? I hope it’s settled down a bit. Explosive pooing is horrendous isn’t it. They want a poo sample off me here at the hospital but I’ve tried to explain after yesterday’s events I’m unlikely to poo again for quite some time.

Back later. Xxx

Member

Re: February starters 2019 - yes, we rule!

Yes, I have a right shiny head....perhaps I overdo it though, I also do what's left of my eyebrows.....I'm not a pretty sight..

I used those vitamins for ages, I swear by them..I always had lovely nails and good hair, but chemo nurse recommended fish oils so I'm currently getting obsessed with them ( and the oils) that is until I read about the next new wonder cure all for baldies and flakey nails...hubby calls me an advertisers dream....bloody cheek!

Member

Re: February starters 2019 - yes, we rule!

Daisydi what was the name of the superfood / superseed shake you recommended?

Could you please tell me again. Thanks, also where do you get it from ?

 I did a google search but there is so much out there I want to get the correct product.

 Thanks ever so much,

Rosina🤗

 

Member

Re: February starters 2019 - yes, we rule!

what do you do with the oil?  rub it on your head?  doesn't that give you a greasy bonce? Smiley Very Happy

Only thing I've bought is the nettle shampoo bar I mentioned before (that is still in the boot of my car, it probably isn't going to do much good from there, maybe I should try actually using it!)

Oh and I've also got these vitamins (that someone somewhere on the forums recommended), which are sat in my cupboard waiting for me to be 4 weeks post chemo as apparently you shouldn't take vitamin supplements till then:

https://www.vitabiotics.com/shop/perfectil/plus-hair?gclid=Cj0KCQjw_r3nBRDxARIsAJljleF89lIRA6B_Xg564...

Member

Re: February starters 2019 - yes, we rule!

Implausible,

well get you and your modern rads....I'm actually well jel! Rads are defo a walk in the park, today's session was more faffing to get me in the right position but Tuesday was super quick...it varies....

i often wondered how the sessions vary ....4 and a half weeks seems an awful long time for a small tumour with clear margins and no lymph node involvement....urmph! 

They also told me the odd day off doesn't hurt....just as well as I cancelled yesterday's.....

 

will be interesting to read your experience with rads.....

 

oh...met a lady in the waiting room who was 8 weeks post chemo...she had an amazing crew cut...I would say about a number 3 on the clippers....couldn't believe how quick hers was growing back...and she's on herceptin too....ah well....I'll get there in the end.....I've got some organic castor oil too....and almond oil....lol xxx

Member

Re: February starters 2019 - yes, we rule!

Appropriately enough for all this talk of radiotherapy - I just had a call from the hospital with my dates.

I am in for a "CT planning scan" on June 19th - she said I get injected with dye and can't eat for 2 hours before, but can drink anything except milk (?) . I asked if this is when I get my dots tattooed and she said they don't do that any more....so how they know where to aim the laser beams I don't know!

Hang about, I just found this on their website:

 

<<What is surface guided radiotherapy (SGRT)?
SGRT uses sophisticated 3D camera technology to accurately target and kill cancer cells.

• During your treatment, cameras monitor your exact position to make sure the radiation is precisely targeted
• The treatment area receives the maximum dose of radiation therapy. The surrounding healthy tissue receives a much lower dose. This reduces the risk of side-effects
• SGRT is often used to enable DIBH treatment for left-sided breast cancer with the benefit of minimising dose to the heart
Unlike some other forms of radiotherapy, SGRT means you don’t need to have any permanent markings (tattoos) made on your body.>>

 

(I'm almost disappointed..... I figured that little dot would be kind of a badge of honour! I guess I will have my scars for that. And my weird grey curly hair, or however it grows back Smiley Very Happy )

 

And then the actual rads are Mon-Fri for 3 weeks (so that's 15 sessions in total) from July 1st, at 9:30 every morning. So that means I'll be out of the house from about 8am to 12ish..... home in time to work from home in the afternoons to make up my 3 days' worth of hours over the week. Going to be a bit knackering but I'm glad it is 3 weeks not the 4 I was expecting, and that I get weekends off.

 

I genuinely thought you had to go in at the weekends aswell because when the doc first told me about radiotherapy she made such a fuss about how I mustn't make any plans during that month because it is super important you don't miss even a single session..... so I figured if I couldn't skip a random Thursday, say, then why would you be able to skip Saturdays and Sundays? so I am delighted to hear that weekends are recovery days.....

 

I wonder why you guys are doing 4 weeks and I am only doing 3? The doc did originally tell me it would be 4. Also I was supposed to be having double zaps - the boob and the armpit separately - but the schedule only says 15 minutes per sesh which doesn't seem long for 2 lots of positioning etc. Ah well - I'm seeing the onco tomorrow (for the first time since before I started chemo back in Feb!) so I can ask him all these questions then....


Dr James - I know the temptation is strong but you really mustn't beat yourself up about the decision to stop chemo. I know I've told you before but I'll tell you again, in your circumstances I would have done exactly the same. Like Nettie said, is there a possibility you could ask to see another onco to talk it through in a bit more detail now that it isn't all so urgent, and hopefully that might put your mind at rest?


Nettie - your daughter is lucky that she only has to produce a wee - after my hysterectomy I wasn't allowed home until I did a number 2. Which was easier said than done as they had given me some codeine immediately after the op for the pain, which of course stops you pooping! They really don't think these things through Smiley Very Happy Hopefully she is home by now - I wish you were too but it looks like they are doing that "symptom free for 24 hours" thing that they did with me the other week. So annoying when you feel perfectly fine and ready to go! I was all ready to dramatically discharge myself against doctors' orders by the end, like people always do on the TV.... but I was too chicken Smiley Happy Hope they let you go bright and early tomorrow and that it doesn't mess with your weekend plans.

 

As for Peggy - she was the lead character in that 5 page comic I was working on for months and bored you all silly with Smiley Happy She isn't 100% real, but is loosely based on a real "prostitute with a heart of gold" who was an informant back in the 80s to the chap who wrote the comic story, when he worked as a policeman. He worked with a number of ladies of the night - for want of a better term - in those days and has collected some of the anecdotes they told him - some funny, some sad - into an anthology graphic novel with each short story illustrated by a different artist. It comes out later this year.

 

Marlyn I'm glad you are feeling better than yesterday - albeit with a red, sore boobie Smiley Sad the rads nurse earlier told me that it "might start to feel a bit like light sunburn by the end of the treatment" - but yours sounds more than "light" sunburn, and you are only 6 sessions in! I think she was underselling the symptoms a little! She also assured me that radiotherapy in itself doesn't cause fatigue, but that people tend to feel tired because of all the daily travel. But I reckon that's b*ll*cks too as my cousin lived virtually next door to the hospital where he had his rads and he was still exhausted. He did assure me it is a doddle compared to chemo though, which is what I'm relying on. Would you say that's the case?


No hair regrowth for me yet either..... I keep checking too!

 

Seaside, that's a total bummer about the art therapy course Smiley Sad pity you can't spin it as a doctor's appt and sneak out of work for it in September! Although it sounds like you will need to be a bit all hands on deck at work when you go back Smiley Sad
Hope you have a lovely weekend in Norfolk!

 

Talking of work - Edinbird, I hope all went ok this morning?

 

Susie thank you for the lovely garden pics. I think worrying about results is the human thing to do - even if it is a bit pointless at the end of the day as it doesn't make them come round any quicker Smiley Sad Tell our brains that, though, huh??? So will they send the lump off to the lab after your surgery ? Hopefully they won't leave you waiting too long for news. I suppose your ongoing treatment after surgery depends on what they find? We will all be keeping our fingers crossed with you for the best possible results.

 

Hope everyone else has had a good day - Trixielady in particular, hopefully a lot better than yesterday!!

 

take care all

Sarah x

Member

Re: February starters 2019 - yes, we rule!

Love the lavender Susie B 🤗

Member

Re: February starters 2019 - yes, we rule!

Hi everyone

If I get this right a few photos will follow🤞. Was feeling a bit down and anxious, not about surgery as such but post surgery and getting results. Unlike the rest of you I know what my bc isn't but don't know at present what it is. So I've taken a few pics, after refilling the bird feeders, whilst wandering around the garden and unwinding a little. The flowers are for all of you brilliant ladies but especially for those of you having a rough time, be it hospital admissions, work related problems,  chemo or rads related. To prove my diet is improving I had some of the lettuce and radish with my lunchtime omelette. I mentioned the other day that I'd ordered the Mantis hairbrush. It arrived yesterday and I tried it this morning. It was ok and was good as a scalp massager and brushed through my hair well. Worth £25? Jury's out at present. Will keep you posted. Also trying out organic castor oil on hair, eyebrows and lashes. Going to have another walk around the garden, I'm sure some flowers need dead heading. I'll try and respond to your posts later. All the best Susie B xxxxx    20190530_142036.jpgLettuce between runner beans20190530_143718.jpgFushias20190530_142521.jpg20190530_142457.jpgLavender20190530_142159.jpgNew clematis  

Member

Re: February starters 2019 - yes, we rule!

Hi seaside 

in total I'm to have 23 sessions, dreading to think what boob will look like at the end??? It's really itchy too....I'm using E45 , double base gel and udderly smooth....I chop and change...

feeling better today but extremely fatigued....but reading on the posts fatigue seems the norm! I've just read trixelady post.....what a horrible start to her day yesterday....but it was good to see some hair growth.....I'm getting obsessed ( surely not) with checking in the mirror at my scalp....still loads of pink....hey ho....xxxxx

Member

Re: February starters 2019 - yes, we rule!

Hi Marlyn,

 

You posted while I was typing. Sorry to hear you were poorly yesterday. How are you now and how many more sessions to go? Red boobie sounds painful. Are you using any particular cream on it?

 

My oncologist thinks I'll have 24 sessions but I'll wait to get confirmation of that from the radiographer. 

 

Hope you're feeling better today.

 

Xxx

Member

Re: February starters 2019 - yes, we rule!

Good morning everybody,

 

First of all, Nettie I am so sorry to hear you're in hospital. Not only that but I realise I put your name by mistake when commenting on Sonia's afternoon tea which would have been the last thing on your mind yesterday! Sorry both of you and I hope you feel better soon, Nettie so you can go home.

 

Rosina your Mum sounds a bit like mine when it comes to lack of inhibition. She would be commenting on all the other patients too in a very audible voice while I would be squirming in the chair. Glad it all went well though and now just one more to go.

 

Edinbird, I hope you managed to sort out the interview situation. Please let us know what happened when you're ready.

 

Trixielady, so sorry to hear you were so ill yesterday. How are you today? Hope you've managed to avoid a stay in casa NHS.

 

Sarah, your work situation sounds like stress you could do without. I hope it settles soon. Your art work is fab! Must be a good way to destress as well. I am a bit disappointed about the arts on prescription course that I applied for. After waiting patiently for a month, I rang them yesterday, only to find they haven't seen my form and that I've missed the current course by 2 sessions. The next one starts in autumn when I'll be back at work. So no art therapy for me which is a shame.

 

MBJ, I know it's disappointing not to have lost weight especially when you've been good but at least it stayed the same. Like you say, it might show next time. Keep going 😊

 

Daisy, how are you today? We're en route to Norfolk again - Sheringham this time for some more sea air.

 

Hope everyone else is ok today.

 

Have a good day.

 

Sar xxx

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Oh my, sooooo many posts! Nettienoo....wow, sorry to hear your in the clink, hope you come home tomorrow....will you still try and go away this weekend? 

 

I cancelled my rads ads yesterday as I was proper poorly and not able to drive but back on form today and just back.....I've had 6 sessions now and am getting a right red boobie! 

 

Will scroll through all the posts now and have a proper catch up...

 

love you all xxxxx

Member

Re: February starters 2019 - yes, we rule!

Ps Sarah, I’m intrigued by Peggy the sad prostitute. Tell me more. X

Member

Re: February starters 2019 - yes, we rule!

Sarah, although my daughter lives in Stafford near me she is at Stoke hospital and I’m in Wolverhampton so no chance of bumping into her. She is hoping to go home later today. She has to wee first though so she is glugging water down. 

Doc has just been in and she wants me to stay in another day until my temp is normal for 24hrs.  Ho hum!😞. We were supposed to going away in the caravan this weekend. She did say I should be able to go home tomorrow. I really hope I can still get chemo 5 under my belt on Monday. 

Marie, if I remember rightly the % benefit you would gain by going through chemo was really small. This and the fact that you were so ill probably made the Onco agree with you stopping. Every case is different. Do you get to see the Onco again at any time because it sounds like you need your mind putting at a bit more rest about the decision. Xxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Nettienoo

Oh I am sorry you are back in hospital again feeling rough. I tell you now you are one tough lady you have stuck to your chemotherapy what ever it has thrown at you. I really wish I had had your courage to carry on. I really mean that 100%. Although it was my decision I do think I had a very non committed Oncologist who did not offer me any viable alternatives. Maybe looking back I should have asked for a second opinion. But I was feeling so ill I was not really up for being a self advocate. 

I hope your daughter is improving, everything seems to come at once. Let's hope your chemo 5 can go ahead on Monday but don't take any needless risks for the sake of a few days. I know you will make the right decisions.

Hope you get home soon x

Member

Re: February starters 2019 - yes, we rule!

 

Morning ladies

 

Nettie!!! I somehow missed that you had been sick last night when I was doing my round up.  Not sure how.  So sorry to hear you have ended up in the hospital but it sounds like it was the right thing to do and I'm glad you are on the mend.  Hopefully you will escape soon.

 

Very considerate of you to keep it all quiet from your daughter although I bet she will give you a telling off about that if she finds out later Smiley Wink  Are you both in the same hospital or do you live in different places?

 

Let us know how you are getting on xx

 

Edinbird....very best of luck with that meeting this morning, please let us know how it goes!

 

Rosina, the Warrior was a nice appropriate card for you to end up with yesterday just in time for your trip to hospital.  And spending a whole day dealing with your ma Smiley Very Happy

 

Looks like the steroids were doing their wide awake club magic on you in the middle of the night again.  I actually said to a friend yesterday that as I am so damned exhausted all the time at the moment, I genuinely can't wait for next Monday when I get to start my steroids again, as those 3 days are the only time nowadays that I feel awake.  The rest of the time I'm like a hibernating dormouse.  I love my 'roids!  Smiley Very Happy


Maybe I can order them online along with some cocaine from your mum's source from the Cosmo magazine Smiley Very Happy

 

MBJ - I'm glad I'm not the only one to have the occasional bed snack Smiley Very Happy  I think I would be worried about excessive crumbage from Ryvita though!  Hate a crumby bed sheet....

 

As for uneven boobs, I am VERY mismatched since my lumpectomy.  My lump was a big 'un (3.5cm) so, what with the margins on top, she had to take out a lot of flesh, which meant a major remodelling of what remained.  My right boob is now very pert, and about a B/C cup.  Got to admit my surgeon did a cracking job.  My original left boob is a DD and as middle aged and droopy as ever.  My nipples are in different time zones Smiley Very Happy


It is very noticeable even through fairly loose clothing, so I'm quite paranoid about it.  Have to wear really really baggy tops. 


In August I go back in for final surgery to have the port taken out of my left boob and while I am under she will even me up - so I basically get a free boob job/lift on the other side so that I match.  Can't complain at that!

 

The only thing that worries me about that is that, should the breast cancer ever come back on either side (I'm now touching my bedside cabinet in a reflex superstitious way...) , they won't have as much boob to work with for another lumpectomy.  But that's a bridge to cross if we come to it....

 

Right, enough pre work waffling, I need to get up and dressed and to the office by 10, better get a move on!

 

Hope everyone has a good day.  Or at least not a rotten one.

Sarah x

Member

Re: February starters 2019 - yes, we rule!

Hi all, just a quickie,

My vomiting and diarrhoea yesterday (it’s obviously the thing to have this week from other posts)  plus temp of 38.3 ended up in me being admitted to hospital yesterday.

I’ve been on drip and feel better this morning so hoping they let me out later. Chemo 5 due Monday and I don’t want anymore delays. Bad timing as

my daughter was having her hysterectomy late yesterday and I was desperately trying to keep the fact I was back in hospital from her. She messaged me to say she was back on the ward about 9pm and apart from being quite sick and the obvious discomfort from op she was doing ok. Phew! 

Great news about Lexie Sar. Such a relief for everyone. 

Edinbird, are you employed by robots? They don’t seem to see past protocols and procedures. Asking what adjustments when the only obvious adjustment is not putting you through the process at all. Their empathy is non existent you poor love. 

I’ll read through all the posts later my loves. Update later. Xx

 

 

Member

Re: February starters 2019 - yes, we rule!

77C9E95C-BBC8-43B7-A12C-6BF4CE9246A1.jpeg‘The warrior within is made of light and has the capacity to shine even more brightly when facing darkness head on’

As promised, Rosina x

Member

Re: February starters 2019 - yes, we rule!

Morning Implausible, 

a lovely post.

 You really do represent us well.

Can we have you as Team Captain?

I am wide awake at 4am. It’s 4.30 now so I thought I would see if there were any posts.

MBJ I enjoyed reading yours too. My right boob definitely looks smaller than my left and I understand that rads may shrivel it some more. The blue dye is still faintly visible too but it doesn’t bother me (free tattoo courtesy of the Holy Unmercenaries) and if I am getting more dots for rads ( as Marlyn says) well who can complain 🤪

Mum by the way was very impressed with the Macmillan nurses and the Macmillan Support Center so she ‘gets ‘ my walking fundraiser now.

Her version of cancer treatment would be complete bed rest for 6 months ( permanently sleeping for at least 12 hours a day) or turn into Rip Van Winkle would be even better!!

Implausible, Your partly finished illustration is excellent . No art therapy this week for me. I may have a go in doodling in my journal.

Pulled out the ‘warrior’ card yesterday morning. It was really helpful visualising him during chemo yesterday especially when mum read Cosmopolitan from cover to cover . She described it as an ‘education ‘ and did I know you could now order recreational drugs online and they come straight to you by post: cocaine etc. No I didn’t. 

She was much better ( less snorting and tutting) when she read about Joanna Lumley in another magazine.

I will post a picture of Warrior man later on today. 

Stay strong every one.

Rosina ☘️