61591members
324905posts
cancel
Showing results for 
Search instead for 
Did you mean: 

February 2019 chemo starters

Member

Re: February starters 2019 - yes, we rule!

Hi All

Thanks for all your feed back on swelling - I was told my body needs to re route the fluid and I tried the exercises but I cannot do them due to the swelling I’m going to look at the lymph node exercises drainage and see if his helps. They gave me a cushion to put under my arm but again it gets too painful I am back next week for my results so I’m gonna see if I can manage and have it drained again. I can’t even wear a bra due to my big boobs which doesn’t help. 

Bloody surgery/cancer/chemo grrrrrrr proper fed up with the lot 🤬🤬🤬🤬 of it....,,,,,

Rant over off to bed tomorrow is a new day 🙃

 

 

Member

Re: February starters 2019 - yes, we rule!

Sarah I'm not sure why they wouldnt let me do the onco test either.  It must be their trust policy?  I was even going to pay for it myself (or my sister offered to pay for it) but they were adamant and that was when 1 out of 3 nodes were positive.  Its always bothered me in that they have never told me the whole story!

Member

Re: February starters 2019 - yes, we rule!

Hi all

 

Well I'm proper zonked after 2 trips to the Oxford zapping centre today (4.5 hours travelling and lots of waiting around as the machine is still being a little temperamental), but let's try a quick reply to everyone before I pass out Smiley Happy

 

Nettie, that app looks like fun Smiley Happy  your heavily filtered face there really reminds me of someone famous, especially in the pic with the fringe, but I can't think who!

 

Thamks for the podcast link Rosina.  I'll have a listen when I'm in the right frame of mind.  I tend to avoid reading/watching/listening to "cancer stuff".  Not sure why.  Don't want to hear anything that might worry me, I guess.  Plus I try to spend as much time NOT thinking about cancer as I can.  (Bit difficult when I'm at the Genesis Care Cancer Centre every blooming day Smiley Very Happy

 

Oh and huge good luck for the giant hike tomorrow!!!  Hope the weather treats you well, not too hot, not too cold, not too wet.....

 

Susie yes!!!! Dye your hair pink!!!!! Join me!!!!!  Smiley Happy Smiley Happy Smiley Happy
Hooe your chemo went well today.  Enjoy those 'roids.  You know I'm jealous of that part at least Smiley Very Happy

 

Daisydi, glad to hear that that your rib/tummy pains are on the mend

 

Edinbird, I already posted earlier re your onco meeting and disappointing results.  Hope you are coming to terms with stuff slowly.  I know you are a tough cookie! 
Just spotted your earlier post about your legs not being tired any more when you were walking.  That's fab news.  I hope mine come back to life soon too!

 

MBJ that's brilliant that your choir raised so much money for BCC!  And you genuinely look fantastic with that cropped do!  This is going to sound odd, but it works so well because you have such a pretty, feminine face.  So you can carry off really short hair without remotely looking like a boy Smiley Happy  Whereas I think I have quite masculine features.....  so I'm not sure I could rock that look so well.  Maybe with make up on.

 

But anyway, yes, you look fabulousSmiley Happy  and I LOVE that 3 generations photo too.  Beaming smiles all round Smiley Happy

 

Rosina, congrats on smashing your funding target just in time for your hike.  And hopefully you and H1 will make up in time to enjoy your alone time without the kids Smiley Happy

Glad you get an extra recovery day before starting rads

 

Sonia ...you'll be starting hormone stuff while still halfway through rads then?  Weird how different all our regimes are.  I've been told I won't see the oncologist again until 6 weeks after rads, and he hasn't even started to discuss hormones with me yet.  In fact I only know I'll be having them because my surgeon said so right back at the start of all this....   so I figure I won't be starting until at the earliest mid september....

 

Daisydi, I did have the oncotype dx test (and I also had one positive node so I'm not sure why that stopped you having it?), and my result was fairly high (34) which was why I had to have chemo (anything under 20 and I wouldn't have, apparently).

 

Both my surgeon and my oncologist independently (unless there was some off screen collusion I'm unaware of) recommended that I NOT have a full node clearance, despite my one positive sentinel node (out of only 2 removed).  They both assured me that chemo and radio targeted to my nodes as well as breast, gives the exact same results as full clearance plus chemo plus breast-only rads, which was the alternative.


So I took their advice and didn't have the clearance.

Got to say I'm a little nervy about that decision now given that 2 people out of our little group still have node involvement after chemo....  I just need to hope that all these rads have taken care of anything that the chemo might not have fixed....  fingers crossed eh??

 

Night all
Much love
Sarah x

Member

Re: February starters 2019 - yes, we rule!

Hi Deano, 

 

I had my swelling drained twice after surgery, 5 weeks ago today. 1st one about 10 days after the 2nd 8 days after. I still have sme swelling but I think this is general post op bruising plus a bit of fluid. It was painful Tuesday to Thursday this week as every time I put my arm doen staight it made the area bulge and tighten, sorry that's the only way I can describe it. Today it was a lot  better so hopefully yours will improve too. To help things along I still do the arm exercises along with gentle massage around the lymph nodes in the upper chest/neck area, run my hand along the outside of my arm, do breast stroke movement and roll ups, pretend you're lifting a dumbbell. Basically do anything to keep the arm moving, it may be coincidence but my tennis ball hasn't reappeared since.🤞🤞🤞🤞. If it gets too uncomfortable then get it drained agained.  Hopefully that will be for the last time. Hope this helps. Take care xxxxxx  

Member

Re: February starters 2019 - yes, we rule!

Hi Deano,

 

Sorry you're still suffering with swelling in your armpit. I know how comfortable it is. I always described it as having a golf ball under my arm. Mine cleared without the need for draining by just keeping my arm moving as much as possible without causing pain of course. I hope it clears soon for you. Xxx

Member

Re: February starters 2019 - yes, we rule!

HI Susie,

 

Hope you're all done and back home resting by now. Well done for getting back on that chemo bus- you can tick this one off now. Hope you have a restful weekend. Xxx

Member

Re: February starters 2019 - yes, we rule!

Edinbird, so sorry to hear your news. I can only imagine how gutted you must be feeling. We are all here for you every step of the way. Big hugs xxx

Member

Re: February starters 2019 - yes, we rule!

Deano I had a drain in after my anc for 6 days.  When it was removed I got a bit of swelling but my bcn said it just needs to find another route to drain.  It was never that bad.  I think I found specific exercises on You Tube but it all just settled down in the end.

Member

Re: February starters 2019 - yes, we rule!

Ive just got to get this off my chest as it is really playing on my mind.  Sorry it it is not what you want to read.  When my team "forgot" to do my anc after all the apologies and taking full responsibility etc. etc. my surgeon said that in the US they dont do the anc any more as they proceed straight on to chemo as the chemo kills all the remaining cancer cells and the radiotherapy will deal with the DCIS.  I was seriously considering this as I really did not want to have a third surgery, let alone a full clearance if there was a choice.  I didn't want chemo either but suspected that I would have to have it anyway.  I really wanted an oncotype test to see if my tumour would respond to chemo but that wasn't available as at the time I had one positive node.  When I went back to get a further follow up my case had been discussed at the MDT meeting and my surgeon said they insisted on me having the clearance as chemo alone was not approved by NICE at the time.  Reading up on Susie and Edinbird's experience now I am so pleased that this was done as there are no guarantees that chemo alone will kill all cancer cells which is what I truly believed.  It just goes to show how important the oncotype test is to see whether chemo is beneficial.  Just wish they would do it for everyone.  Sorry rant over!

Member

Re: February starters 2019 - yes, we rule!

MJB, love the photo you all look so happy xx

Member

Re: February starters 2019 - yes, we rule!

Edinbird, thinking of you, bit what you wanted to hear. As you know I had the mastectomy, I wasn’t give a choice, and although it wasn’t what I wanted they got all the tumour and DCIS, fingers crossed it will become clearer on Wednesday. Xx 

 

Well after my blast session today they said oh the Dr wants to see you, panic set in as only had med review yesterday, it ended up being my oncology consultant who went through all the hormone treatments with me, injection and pellet are booked in for Monday, going to take part in aspirin trial, he then tried to book bone infusion which I told him I’d already had, he explained the letters are behind, glad I take notice of what I’m having. No surgery for 6 months 😥 so this black cloud will hang over me until next year. 

 

Susie hope the chemistry session went okay xx 

 

Rosina good luck for tomorrow 🍀at least you’ll have some piece and quite if H1’ and you are still not speaking xx 

MBJ
Member

Re: February starters 2019 - yes, we rule!

 Me, my daughter and granddaughter. IMG_20190719_171138.jpg

 

Member

Re: February starters 2019 - yes, we rule!

Edinbird, nothing much to add to what has already been said darling. I hope you can take some comfort from the posts. You can and you will do this but for now go and have a good cry/rant/swear....whatever you need to do. Things won’t seem quite so bad when you have a clear plan of action sorted after Wednesday. We love you. Xxxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Deano

I have had lymph node clearance back in December but I had a drain in following surgery. I did get a it of swelling once it came out felt uncomfortable and a bit hard. That went after a while. But I still have swelling not right in my armpit but under my arm where my bra sits. Some days it is very uncomfortable but mostly it's manageable. I also have a reconstructed breast so this might make a difference too. I need to always wear a supportive bra, but not to bed anymore. I am not sure how much mine will improve, another lifetime gift from BC but I am exercising every day and doing the dry skin brushing. To try to keep the lymphodema under check. 

Member

Re: February starters 2019 - yes, we rule!

Hi Edenbird

Really sorry to hear your news as reiterated by some you are strong and you’ve come this far and you can battle through another surgery we have so many hoops to jump through and this is another one if we can get through chemo we can get through anything....

can I ask if anyone had lymph node clearance how long for the swelling under armpit to go down had mine drained this week but it’s the size of a grapefruit again so bloody painful as well.

Any tips on how to reduce this without drainage would be appreciated 

Susie good luck with T 

Also loving  the photos and stories you are putting on 

Thanks ❤️❤️❤️

Member

Re: February starters 2019 - yes, we rule!

Thinking of you Susie, hope t is ok.....you ok on fec didn't you? Xxxx

Member

Re: February starters 2019 - yes, we rule!

Hi SusieB, 

hang in there with the chemo.

 I am flopped on my bed, resting.

Got a call from the Hospital, rads are now due to start on Tuesday instead of Monday as they haven’t got a consent form from me for the Booster week. I get to see the oncologist though too and another CT scan to get marked up for the booster zap. I was verbally told about the booster but no paperwork was given to me to sign so the oncologist assistant has probably missed a trick there. Anyway it’s better for me. More recovery time from the Hike. 😊

So from one 1pm on Tuesday I am hanging out at the hospital. 

Have a good weekend everyone.

Member

Re: February starters 2019 - yes, we rule!

Hi Rosina, enjoy the peace and quiet while you can

even if it's not the way you expected. Hope H1 gets over his hump. Well done on the  fundraising collection. Hope your hike goes well tomorrow.  I'm currently sat here in the unit having just had my T now about to have the C. xxx

Member

Re: February starters 2019 - yes, we rule!

Sorry Edinbird you must not do must x

Member

Re: February starters 2019 - yes, we rule!

Edinbird so sorry to hear your news. Do must feel devastated at the moment, but you are a very strong lady and you will get through this. Take heart on Daisydi's experience. If possible and you have the choice then I would take the slowly, slowly approach and try and get clear margins. Full ANC is fine and the scar will be the same you have already. As the others have said we're all here for you so talk to us when you feel ready. Sending you virtual hugs, just wish they could be real ones❤❤❤❤❤❤❤❤❤❤

Member

Re: February starters 2019 - yes, we rule!

Hang in there Edinbird,

 I will be thinking of all of you on my hike tomorrow.

 I went into to school today ( without any head covering) I am quite liking my mad Einstein look when I am in the mood. 

I was supposed to meet up with a colleague re. Some of my students for next year and she had forgotten that she had training to do instead. Anyway, there was plenty of stuff to keep me occupied ( just familiarising myself with the new upgraded computers for a start 😳).

Best bit , pat on the shoulder from an ex- student ( we got on , he has a wacky sense of humour, ADHD and loves dancing to BoneyM  🤗  his peers couldn’t get him 🙃) he asked me how I was and whether my treatment was over . My reply was this  is going to be chronic but I am dealing with it 🙂

Breakfast this morning was a ‘green smoothie ‘ : 1/2 avocado, fistful of kale, fistful of parsley, 1 banana, coconut milk 2 tablespoons, water. It tasted alright ( my concoction).

H1 has got the hump and isn’t talking to me ( good , peace and quiet).

The kids are off to my brother and his lot for 3 weeks on Sunday.

Anthony (k2) quips so are you to going to have some quality time together 😂

Got to laugh, seriously, life is nuts.

On the fundraising side , the decorated shoe box on my desk had £78.30 in cash when I opened it at home. It has been added to my Just giving page and I have now broken my £500 target.

Yeah 👍

 

Member

Re: February starters 2019 - yes, we rule!

Oh Edinbird, it must feel like life kicking you when  you're down Smiley Sad

 

I know you are a practical person and once you know exactly what's going on you will rally and take it all on board and cope brilliantly.  

 

But until that point, allow yourself to be disappointed, be upset, be angry with the world.  They are all natural reactions to news that wasn't as positive as you were hoping.  

 

We are all here for you x

Member

Re: February starters 2019 - yes, we rule!

Edinbird. 

Thats a sucker punch, we put our whole worlds into the surgeons and when you get news that they need to go in again....well...your world flips again! As for your job, play it by ear if you can, my friend was on oral chemo for breast cancer and she runs her own bar and b&b, she managed...she didn't loose hair, she just said she got pretty tired but she did it, I'm keeping everything crossed oral chemo will be nothing like what you've already had...

It will be interesting to see what your surgeon recommends. How do you feel about a mastectomy? 

 

Its pretty sobering isnt it, I'm a complete control freak, I like schedules timetables and plans and I tick things off as I go, that way I get my head straight. I did it with surgery chemo rads meds....tick tick tick....to be told more needs to be done throws everything up in the air again...does that mean life goes on hold again? How will I feel? I really feel for you love, your support system here is enormous, I know it doesn't change anything but I hope you get positive emotional re enforcement from us....

 

Do what you got to do until wed, then you can write up another plan of action, get your head around it all put your practical hat on and get back in the ring...we're all in your corner....xxxxxx

Member

Re: February starters 2019 - yes, we rule!

Oh Edinbird.  Big hug from me.  That's what they found with mine as in DCIS around the original tumour which they were very surprised at which is why I had to have more surgery.  Yes you will prob have the anc now but the scar is no worse than what you have already.  When they didnt get clear margins the 2nd time round they said they had to recommend mastectomy but they had sort of got clear margins just not enough, i.e. 1mm so I decided that I would give it one more go as I didnt want to lose my breast for a 1mm.  Its purely a personal choice though and your age may come into it more.  We will be here to support you whenever it is so dont worry about being on your own going through chemo.  We will be with you every step xxxx

MBJ
Member

Re: February starters 2019 - yes, we rule!

Oh Edinbird

I am sorry to hear you will be having more surgery it must feel like a never ending nightmare. I hope you get some clear answers on Wednesday as to the best way forward for you regarding the type of surgery you opt for. I suppose it will depend on how confident the surgeon is about getting it all the second time with clear margins because a third surgery if not would be hard to bare I think. 

You also have the added stress of you job so I really feel for you and the stress you are feeling. Please take care and use this forum as a way of helping you think through what you are going to decide to do next.

Lots of love xxxxx

Highlighted
Member

Re: February starters 2019 - yes, we rule!

Quick update whilst I’m waiting to see the heart trial nurse...

 

Oncologist had the results. Not good. There was still a third of the lump cancerous and two of three nodes. Didn’t get clear margins and they found DCIS. So I’ll need another op will find out what on Weds, hopefully just in the same places but likely full clearance and fingers crossed just more from around where the lump was, but they could recommend a mastectomy. Depends on what surgery as to whether I need rads and then I’ll need six months of oral chemo. Wonderful.

 

Feeling a bit empty now - it’s not like this was all for nothing as the chemo has done a job but it’s the extra surgery that’s got me. I was half expecting the oral chemo. So I now will be the last of us on chemo albeit I know it’s not the same. No idea if I’ll be able to manage this job in Glasgow now 😞

MBJ
Member

Re: February starters 2019 - yes, we rule!

Good Morning Girlies

Here are some photos of last night's friends and family Rock Choir end of term party. We raised £198 for our Breast Cancer Care charity that has brought us all together. It was a relaxed night so no full uniform as you can see by the shorts and yellow trousers. Everyone was complementary about my new hair style, infact one lady said oh you have had your hair cut - very funky  she said. Until I explained that  I had been wearing a wig!

I gave a little thank you to everyone for raising the money, told them about the charity and how it benefits women like me (us) and some facts and figures on BC, and indeed how your life is changed in an instance following diagnosis. 

The cakes were fantastic and certainly NOT Slimming World friendly. So here are the photos, spot the deliberate mistake (not) with the signs at the back must be Welsh English 😄.IMG_20190719_102007.jpgNot much hair but I am fed up of the wig.

 

IMG_20190719_101819.jpgNeed some lessons on signs.

 

Member

Re: February starters 2019 - yes, we rule!

Hello xx

 

I’m sat in the hospital waiting room to see the oncologist... might get surgery results today if they’re back but they may not be. The surgeon gave me the chemo results so hopefully I’ll get the surgery results from the oncologist! If they’re not back I’ll at least speak to him about the sleep and sweats.

 

Popped into work first and then left a little later than I wanted to walk round and my legs didn’t object one bit! Yay maybe a couple of weeks of not moving about much did help! My legs and hips were definitely sore after my walk on Tuesday but that was a lot longer and further.

 

Great my appointment was at 10 it’s 10.10 and a woman who sat down next to me about a minute ago got called in straighten away to see my oncologist... might be here a while then...

Member

Re: February starters 2019 - yes, we rule!

SusieB ((((((hugs))))))). X

Member

Re: February starters 2019 - yes, we rule!

Good luck for today Susie x

Nettie not sure about the hair colours, made me giggle though and the lashes are fab!

Ive just remembered that before starting hormones I should be given a DEXA scan to look for osteoporosis and also will have to have biphosphonates so I'm pleased I stopped GP from prescribing.  Am still waiting for a phone call about it but am definitely not taking before I finish rads.

Rosina I will try to watch that podcast about hormones, I started listening to it but got distracted.  I already knew about fat producing oestrogen which is why I want to lose weight.

Edinbird do you have an appt today for results?  If so good luck.  

Sarah good luck with your double rads session.

I started on my probiotics yesterday and nothing nasty has happened so far.  In fact think some of the pains have already subsided.

Hope everyone else has a decent day. How are you Marlyn?

Speak later x

Member

Re: February starters 2019 - yes, we rule!

Morning everyone 

 

Well considering I took 8, yes 8! steroid tablets yesterday I slept pretty well last night🛌🏾😴😴😴. Thanks for the tips on taking 2nd dose early afternoon. Lot's of chat about disposal of needles. I pop mine in a chinese take-away plastic box, donated my my son, take it to my chemo unit when attending for treatment or PICC care who then put the needles in one of their special bins. No problems at all.  

 

On the hair front, with you Nettienoo, can't wait to get my hair dyed again, but that's going to be ages away😭😭😭☹. May go pink first as a fingers up to bc. As for the summerhouse if you have room then go for it. We got one partly because the back of our house has a bay window in the middle and if we had a conservatory leading from our lounge it wouldn't look right. 

 

Edinbird hope you're feeling better. Take it steady and if you don't feel well enough stay at home or go in but leave if necessary. That's an order!

 

Implausible, hope you have a better day with your rads. Who else is having rads today? Sorry losing track on who's doing what now. It was much easier when we were all on chemo.

 

Anyway must get up now. Got a few things to do then it's off to get on the chemo bus again at 12:30☹☹☹☹. 

 

Have a good all of you. Shame about the weather⛈🌥🌦🌨🌩🌫☔.

Member

Re: February starters 2019 - yes, we rule!

podcast/boobs-arent-worth-dying-for-integrative-health-breast/id1369769621?i=1000419582760

This podcast is about hormones and breast cancer.

Just started listening and I am already learning 🤪

Member

Re: February starters 2019 - yes, we rule!

Pps those photos were so heavily filtered, I can hardly recognise myself but do love the fact there are eyelashes. 😂

Member

Re: February starters 2019 - yes, we rule!

Quick ps for SusieB, your summerhouse 😍😍😍. I need one in my life. X

Member

Re: February starters 2019 - yes, we rule!

Well girls on the sharps bin front, I did my very last wbc injection tonight another 🔔🔔🔔🔔🔔 moment  (I think I’ve done 42 in total) and sealed the bin as best I could. I will offload when I have my next hospital appt. Not sure what dept though🤔. I can’t believe there has been so much trouble getting rid of them for some of you. I hope I don’t encounter similar or I will probably just dump it on a counter somewhere and make a run for it. I’m feeling much better this evening. The bone pain and headaches from the wbc will start in the next day or two but I know I can cope with them so just want them out of the way. 

I can’t believe how much hair some of you have. Well done on persevering on the cold capping. I know it didn’t work for everyone but when it does it makes a huge difference to hair loss amounts.

I have a tiny bit of growth, a mix of dark, white and silver. I’ve given up with scarf/hat/ wig wearing in this warm weather. If I wear anything on my head at the moment, I feel hot and a bit faint within minutes so I’ve just had to be brave. I went for a hospital appt today and didn’t take anything to cover my head and actually forgot my head was bare most of the time. I got some looks and smiles but no outright staring. If anyone would have said in Feb that 5 months on I’d be happily trotting around in public bald, I would have laughed at the ridiculous notion. I really just don’t care anymore. I’m more self conscious about the eyelashes to be honest. Which reminds me, I’ve got a date for a LGFB course at long last. Mid Aug. I hope it will have been worth the wait.

My bestie showed me an app for trying different hairstyles on. I thought I should try and get used to the look of grey hair. We had a right giggle over it earlier. I’ll try and post a couple. AEB3C29D-C42C-42FF-B46D-BC0C3D61948A.png

 

D42D032F-C2CC-4F34-9015-5AFFCEE22E14.png

What do you reckon???? 

I think, I’ll stick with the brunette as soon as I can dye again. 😂😂😂. 

Congratulations on reaching 6 weeks post chemo Seaside. 🙌🏻.  Can you eat forbidden foods now?

Edinbird, work tomorrow? I hope it goes well love. Tell them they must all take special care of you or they will have Barry’s babes to answer to. 😊

I hope all the rads peeps are doing ok. It sounds so flipping exhausting but you all appear to be coping well so far.

Thinking of each and every one of you whether I’ve mentioned you or not. I do read every post. Loving the photos.

Rosina, I’ll keep everything crossed for good weather for you but I know you well enough now to know a bit of rain won’t stop you, Wonder Woman. Bye for now. 

Take care everyone. Xxx

Member

Re: February starters 2019 - yes, we rule!

They do like making things difficult up where you are Daidydi 😳

I had filled my bin of sharps and then any extras that I could not stuff in just went into a Tesco bag. I gave the lot to the nurse at my last chemo session.

She took them , no problems with the  bag , emptied it and returned the bag to me. 

 

 

Member

Re: February starters 2019 - yes, we rule!

Maybe it’s because I have a different NHS up here that mine was simple! I was told I could take my sharps back to the chemo ward or to the gp surgery. GP surgery were happy to take it, once they’d put a sticker on it with my name and address on it! I was concerned I was going to receive it back in the post! And why they needed to know the origin of a sealed sharps bin I don’t know? It was sealed... anyway, they took it straight away. Maybe you need to send them to me and NHS Scotland will sort it!

Member

Re: February starters 2019 - yes, we rule!

Thanks Sonia and Sarah.  I wish these people would realise that trying to get rid of a sharps bin when you are feeling very fragile is a big deal.  Why does everything have to be such a battle.  The receptionist said it wasnt sealed properly, it is a small one and I said my nails are too sore to do it after chemo.  I said the hospital took my other one and just put it in their bigger one.  Grrrrrrrrrrr!

Member

Re: February starters 2019 - yes, we rule!

Daisydi, I ended up wrapping my sharps bin up in a carrier bag and throwing it away with my normal rubbish in my wheelie bin!  

 

GP wouldn't take it, pharmacy wouldn't take it, and nobody ever answered the phone number on the sticker on the bin that you were supposed to call for collection.

 

Figured it was all sealed up and I don't have any germs so it was probably not going to do too much harm.  But still!

 

As for the aveeno, I do mine twice a day as instructed by the radiologist.  Once when I get home from hospital about lunchtime.  And then again just before bed.

 

 

Member

Re: February starters 2019 - yes, we rule!

Daisydi, I saw a trainee Dr last time I went to see the GP for my legs and broke down as he was lovely and ask how I really was doing. 

I had a nightmare trying to get Aveeno from my Gp, I said the hospital told me I needed it, took several phone calls, they gave me a generic cream that is meant to be the same as aveeno but it’s not as thick, so I gave up and bought my own.

i cream when I get home, and again at bedtime I  lay on the bed for a bit either then or later so the areas get some air time. Seems to be working so far . I had to take my sharps bin into the hospital as the Gp wouldn’t take it as it cost them !! 


 

Member

Re: February starters 2019 - yes, we rule!

Hi Rosina, it was the GP that I went to.  Couldn't even hand in my sharps bin.  Seems like a third world country over this way.  Cant be bothered with them any more.

Member

Re: February starters 2019 - yes, we rule!

Wow Seasidesar,

6 weeks post chemo 🍀🍀🍀🍀

Fab photo. 

I have ordered 4 headscarves , which can be worn as a wide headband style as I get lots of compliments when I wear my headband from accessorise.

I asked my son which was the best look ( with or without a headband) and he said without a headband I look as if an experiment has blown up in my face 😂 but he was particular about the colour ( he only like the ‘rose gold ‘ one) . So I have gone ahead and bought block colours only. 

Hopefully they will arrive tomorrow so that I can wear the ‘petrol green’ one on the hike. 🤗

Member

Re: February starters 2019 - yes, we rule!

Daisydi,

my GP did the prescription for me. Not the Hospital radiographer or my oncologist.

The chemist did find it on their list of items that can be obtained by prescription.

 I would go to your GP , fill in a repeat prescription form ( this is what I did) and then told the receptionist that it wasn’t a repeat prescription but a new one. Then I told her that I was due to start radiotherapy.

I left it at that and she said she would ask my GP on my behalf.

Anyway, it was approved.

Worth a try.

Rosina

Member

Re: February starters 2019 - yes, we rule!

Update on my massage.

 I was booked in at my regular salon ( where they use gorgeous Elemis products) but they were not happy about delivering a full body massage as I am still going through treatment as far as they are concerned.

So the lovely therapist gave me a hydrating facial and foot massage.

They also said that when cancer treatment ends they want a doctors letter stating that it’s ok for me to have massage treatments .

 They were very apologetic about the misunderstanding but I am ok with what they offered me instead as it was very relaxing.

Member

Re: February starters 2019 - yes, we rule!

Implausible and Nettienoo, glad you both agree with me! Smiley Happy Infact, after I had my weekly line flush I would sometimes go for a McDonalds afterwards and would tell the chemo nurses that was what I going to do! (I seemed to have a bit of a craving for them, not sure why because I rarely eat it normally) They always said if that's what you fancy, have it! They just seemed to be pleased I was eating and no-one said I don't think you should because of the possible weight gain.

As regards deodorant I had a little experiment going on because I was told not to use it on the side I was having rads-I think that side must have been affected because I didn't seem to sweat more or be smellier on the side I didn't use it! My rads onc told me I wasn't allowed to use it all last Summer even after I'd finished having radiotherapy. He told me I'd have other Summers to wear deodorant Smiley Happy  xx

Member

Re: February starters 2019 - yes, we rule!

Afternoon all, just an update on my progress today.  Managed to see a GP who was an Honorary trainee whatever that might mean.  Anyway he was very nice but didnt have answers to any of my questions and had to make various phone calls.  He thinks my pain in abdo is chemo related and the rib pain is due to the fact that cartilage heals quicker than bone, or vice versa, cant remember and should start to settle down in a few more weeks.  Ditto with the other abdo pain and checked whether I could start on probiotics which I can.  Whilst looking at my records he found a letter from the oncologist saying that I should be prescribed Anastrazole after chemo so he's queried that but still waiting for an answer.  I told him I would really like to get rads out of the way before taking on another load of potential side effects.  Asked about the Watergel R1/R2 system and he couldn't find it on his prescription list so that was a no.   Also told him I am being driven mad with itching and we decided I should start taking the antihistamines again so got him to presribe that at least.  Ended up in floods of tears because he was being nice and caring towards me.  My appointment lasted 45 minutes and I did keep apologising but just kept breaking down.  Sarah I think if I had to go back twice in one day for rads I would be in tears so well done for just getting on with it.    So now I have to decide whether to order the watergel system and pay for it myself or trust the Aveeno as Ive just bought loads of it.   When you apply do you do it straight after zapping and then at night or do you wait until you get home?  The disadvantage of the watergel system that I can see is that I have a large area to cover and the sachets might not be big enough and then I will have to buy another set.  Oooh dont know what to do.  Cant bear the thought of another load of blisters and sores to deal with.

 

On the sweaty armpit question I dont think I am sweating so much but saying that I am sweating everywhere else so who knows.  Now do you apply your cream before or after deodorant or crystal rock in my case?  Too many questions...

 

 

Hope everyone is ok x

 

PS loving the hair pics Sonia and Seaside.  I had mine cut last week and it doesnt look too bad but it is still falling out but regrowing as well.  Im sure there are natural colours you can use but cant remember what

Member

Re: February starters 2019 - yes, we rule!

Hello xx

 

Been quiet again as I felt rotten this morning - could not get off to sleep and was so wide awake that I didn’t want to take a sleeping tablet as they don’t seem to work unless I’m a bit drowsy to start with. So I was awake until the early hours and then when I got off it was only for a few hours and I woke up feeling sick! None of that nonsense during chemo! So I was then off and on from about 4.30 onwards, including going to the loo and changing beds! The stomach ache moved downwards after a while and then eventually I thought I’d better get up and all I’ve had is a cup of tea and a chocolate bar. Getting quite hungry now. Not exactly how I wanted to spend my last day before back to work!

 

On the sweaty stakes you know I’ve not been a dry person!! 🥵 my armpit on the good side has been a bit whiffy, all I can smell on the bad side is the dressings! I tried to pluck a few hairs out the other day as when I pulled the outer dressings off I had some quite long ones hiding underneath! My hair seems to be growing back everywhere except my eyelashes. My eyebrows look a little odd, it’s like the hair is dark and thick at the end and thinner and lighter at the root. But I don’t think I have any less of them still.

 

So I’m going to find something to eat now that doesn’t mess up my dinner and then wash my hair. I have to sleep tonight or I will be totally wiped out for work and oncologist appointment tomorrow.

 

Hope everyone is having a lovely day xx

Member

Re: February starters 2019 - yes, we rule!

Seaside Sar, looks like our posts overlapped.

 

love the hair, I had mine cut 2 weeks ago, I’m having a colour problem too, my hair dressers going to look into a natural colouring xx 7473B27B-3E52-435E-9452-5F6499F29FEA.jpegDoesn’t look as bad in this picture

 

Member

Re: February starters 2019 - yes, we rule!

I started writing this yesterday and found it on the lap top today, so I will continue Smiley Happy

Susie, I could have written this as i feel exactly the same.

"As for the chat about dealing with and reacting to our diagnosis I sometimes wonder if I'm still in shock from the diagnosis and don't quite comprehend that all this treatment is actually happening to me. Weird or what?"

I feel like I am going through the motions but not digesting whats  happening.

I love your elephant top.  Oh the rosy cheeks I remember those well. Enjoy Dibley's stay.

 

Rosina, enjoy your massage, I have booked in for one next Wednesday as part of the BC centre.

 

MJB, I hope you enjoyed your coffee, it must be lovely to have your daughter home for the summer.xx

 

Trixielady, thanks for think of me today, hope you are keeping well.

 

Implausible, What a palaver. Hope the rest of your day has gone more smoothly. I asked this morning about when I would start the hormones, she didn't have a clue, so will ask my oncologist, and hopefully I will see him in the next 2 weeks at one of the med reviews. I am having Goserelin (zoladex) a pellet under the skin monthly, and Exemestane (Aromasin) in tablet form. The Dr did review my skin, which they didn't at the skin review just asked was I using cream and did I have any sore skin. 

I will have to starve myself at this rate to loose weight Smiley Sad i really want to loose weight before both of the operations.

 

Marilyn, no wonder your fatigued, at least your herceptin nurse is realistic, the dr I saw today said i should get tired. Really !!!

 

Re being braver. I never needed a wig, so can't relate 100% to that, but I take my boob (prosthetic) off daily, but wouldn't dream of answering the door or leaving the house, but I have started to answer the door now, and not one person has batted an eyelid. I kind of think this is me now, hopefully not forever, but for now.

 

Daisydi, I hope your not in pain today and the chest pains have decreased. xx

 

Nettinoo, I hope that temperature has stayed down xx

 

Rads went okay today, 6 down 9 to go, no redness yet, sightly stiff shoulder today, but think that's the way I slept, but will do extra exercises. weather is changing for the worse just as the kids break up tomorrow what joy.  Hopefully the sun will come back or at least it stays dry to enjoying doing stuff outside.

 

Hope everyone else has had a good day. xx

Member

Re: February starters 2019 - yes, we rule!

Hello lovely ladies,

 

I am officially 6 weeks post chemo today so I celebrated by having my first haircut. The colour is a disaster so I will be wearing some headgear until I can even it out.

 

20190718_120748.jpg

 

Just at the hospital having my Herceptin injection. Appointment was at 3pm and it's now 3.50pm....still waiting. 

 

OK, 4.10 and it's done now. Not as painful as last time because they were so busy that by the time they got round to injecting me, it had come to room temperature. Yay.

 

Rads this morning was interesting. After my usual zapping I had to lie still for a further 10 minutes while they measured me up for the booster which will happen during the last week. They basically attached a metal device with several long rods to the normal machine. This then rested against my scar so it can deliver an intense boost to the area where the tumour was. They then had to trace the exact position of the device and take photographs. I got myself a nice physics lesson while they were doing all this.

 

Now for a catch up with you lot.

 

Nettie, I'm glad your temp came down. Must have been a worry. Hope you're feeling OK now.

 

Cor blimey, what a palaver with your rads today, Sarah. Much as it would have been amazing to see you in MK, I wouldn't have wished that journey on you. Glad it got sorted in the end.

 

Sonia, hope your zapping went well and your meds review. What was that in the end?

 

MBJ, hope you enjoyed your haircut. Nice to do something normal, isn't it?

 

Marlyn, werewolf hair...that made me chuckle! Hope the Herceptin went well for you today. Are you having injections too?

 

Rosina, you're a busy lady! Massage sounds good though. Good luck with the hike tomorrow.

 

Susie, hope you get some sleep tonight. Lovely pic of Dibley 😊

 

Trixielady, how are you feeling lovely? How many Herceptins have you had now?

 

Hope everyone else is OK today.

 

I'm continuing my 6 week post chemo celebrations with a Chinese takeaway tonight.

 

Love to all.

 

Sar xxx