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February 2019 chemo starters

Member

Re: February starters 2019 - yes, we rule!

I will travel anywhere post treatment for a meet up with all of you darlings. What about “Barry’s beauts”? 

By the way I do actually have palpitations when the forum is inaccessible for a while. I may not contribute much some days but I am always trying to keep up with everything however I’m feeling. Just seeing all the chat going on is so uplifting. 

If anyone is on Facebook please feel free to send me a friend request. Search “Jeanette Kimber (Jeanette Lees)”. I will at least know I have a back up for keeping in touch with some of you if the site goes Barrys up at any time. X

Member

Re: February starters 2019 - yes, we rule!

Barry's Birds?  Smiley Very Happy

Member

Re: February starters 2019 - yes, we rule!

Morning xx

 

Yes my bracing walk on the beach did the trick - couldn’t keep my eyes open at 9.30 and slept through til 4.30 - 7 hours! Pretty much a record right now! Still in bed got another hour or so and may doze off again soon!

 

That post about the other forum people is great. We are definitely doing that. And I propose the first place we go is Durham or wherever you end up Sandra so you and Veronica don’t have to travel. A little trip to France would be nice too!

 

And if they are the October Optimists... well we already have all the F words for February. I was thinking the Barry Babes? Barry has gotta be in there somewhere! 😆

 

Have a Barry good day everyone 🌈 I’m just going to read my paper watch the football (Norwich are on pretty much every game at the moment) and short walk to the shop to get a couple of bits that chemo brain forgot on the main shop yesterday 🙄

Member

Re: February starters 2019 - yes, we rule!

Aha, the forum is back.  I couldn't get on earlier? For a couple of hours, I thought I'd lost you all, I was quite distraught!! Smiley Happy

 

While trying to get on I found the site's blog, which I've never read before, and saw this article:

 

https://www.breastcancercare.org.uk/about-us/news-personal-stories/cancer-gave-me-more-it-took-away

 

This is about the October chemo group from a couple of years ago and they are all still firm friends, and even have a weekend away together every year.  That'll be us lot in 2022!! Smiley Happy  nice to see that they all have hair again Smiley Happy

 

Susie.... yay for your new friend's green hair!  Although a sad reason for her colouring it that way in the first place.  I've never heard of that type of cancer.  Gosh!  I birthed three HUGE babies and was ripped to shreds!  Nobody told me that could give me skin cancer down the road.  Blimey. 

 

At least in a way we have got "common as muck breast cancer" not some super rare thing.... as it means there are plenty of other people out there like us to connect with and get support from.  It must be very isolating to have some really rare or unusual type. :/

 

Edinbird your day out at the beach looks great!  Fab photos.  You will sleep well tonight Smiley Very Happy

 

Marlyn the fringe was from wigs4u.co.uk   £16 including the postage.  They have a ton of different colours.  I think it's great, I just pop it into a cap and wear it.  Much less faff and more comfortable than wearing a full wig.  It arrived in about 3 days.

 

Sar I have also heard about this magic card or badge you can show to get a seat, skip queues or to make shops let you use their staff only loos.  My friend got given one when he had prostate cancer.  But I'm not sure how it would work.  Who do you show it to?  Say you are at an event and there is a long queue for the toilet but no staff around, do you just wave it at the other people in the queue?  They won't know what it is! Smiley Happy

Luckily I don't think I'd need it.  If I'm well enough to go out to town or to a gig or whatever, I'm probably well enough to stand or queue....?

 

Glad you got to watch a couple of the playoff games Smiley Happy  and lovely park pics

 

Sonia....8 hours kid herding?  Rather you than me Smiley Happy

 

Pet Sematary (I spelled it wrong.... or rather right.... earlier) was quite good by the way, if you like scary (but not too scary) movies.  I just got back.

Night all
Sarah x




Member

Re: February starters 2019 - yes, we rule!

Sonia.... are you actually going to brave the swimming pool yourself or just watch?  I checked again with my onco when he phoned me the other night but he is still banning me from swimming until after radiotherapy.  That's months yet!  I miss it so much Smiley Sad  did your onco give the all clear?  Maybe mine is just being over protective?
Nice of your birthday to fall in your "good week".  Mine too.  Little pleasuresSmiley Happy
And how was Dumbo?

 

No I have been told the same no swimming pool until after radiotherpy. It seems so long. No today I spent 8 hours herding 58 kids to get to their races on time.I am now exhausted, but it's something I havent done since my op in December so was nice to be back helping again, may just watch tomorrow as I am nit sure my back can take standing that long again.

 

I did come back to a lovely invite to a local spa with afternoon tea, through the Primrose trust (our breast care unit)  

although I cant use the facilities no swimming, they have offered a treatement friendly treatment. It also made me feel good as its for younger patients, have not been called younger in some time,lol. 

Dumbo was very sweet xx

Member

Re: February starters 2019 - yes, we rule!

A quick something that just got mentioned on one of my Facebook forums -

 

Apparently if you’re disabled (which we all technically are under Disability Discrimination Act) you don’t have to pay VAT on mastectomy bras and swimwear and wigs...

 

If you tell them at M&S you’ve had breast cancer they fill in a form and it’s cheaper. No idea about anywhere else or what to do re wigs.

 

Wigs I understand anyone could get a wig. But surely the only people wearing post surgery bras have had surgery... so why they’d not be tax exempt in the first place I don’t know.

 

Hope that is helpful to someone!

Member

Re: February starters 2019 - yes, we rule!

Hi peeps,

 

I've watched two ice hockey games on TV so that's me happy for a while. Will be watching the final tomorrow.

 

Sarah your painted pot looks fab! I did one at Poole pottery years ago which I got out the other day for my daughter's birthday. It's not quite up to the same standard as yours though. I've been to the playoffs in Coventry and Nottingham several times. Definitely worth going even if your team's not in it. Great fun.

 

Edinbird love the photos. So wish I lived near the seaside.

 

Susie thanks for the tips re badges etc. I had come across something similar for when you go on public transport and need a seat. There is a badge you can order. Might try the baby shampoo for my itchy scalp then. Have been using Simple but the smell is starting to make me queasy.

 

I went for a walk around one of our local parks this morning.  Saw some children from my old school doing an Easter egg hunt. Their Mum was wearing bunny ears 😃

 

Some photos of the park. Why do they keep coming out sideways?

 

 

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Member

Re: February starters 2019 - yes, we rule!

Your smell hasn’t gone to pot Marlyn one version of the serum is scent free ( I checked) this must be the one you have.

Re alcohol I was a minimal drinker ( a glass of red at the weekend and then the usual festivities of birthdays and Xmas / New Year. My cancer is oestrogen positive so I have knocked cows milk out of my diet too.

https://www.breastcancer.org/risk/factors/alcohol

Member

Re: February starters 2019 - yes, we rule!

Rosina,

 

eau dynamistante is my absolute favourite....Also the Kate mciver doesn't have a smell.....unless of course it does and my sense of smell had gone to pot! Xxx

Member

Re: February starters 2019 - yes, we rule!

https://uk.loccitane.com/peony-perfecting-cream,83,1,67060,702652.htm#s=86296

Love the photos Edinbird,

 I love the seaside. Must hop on a train to Brighton at some point. I did my usual round in the park today.

Susie B, 

I second the L’occitane products.

 I particularly love the peony moisturising face cream ( I love the smell and texture and use it day and night).

Nobody said I should change my skincare routine so I haven’t.

The other product that I look forward to using has a lemon scent and is the super balm face cleanser by the white company.

This is the first time I have used it and I love it. If I don’t like the smell of something ( or it is scent free!) then I am not interested. I always have to smell the product before purchasing.

That is why I asked Marlyn if the Kate McIver serum smells nice. I can see from the ingredients , that it has frankincense in it and that is another smell I do like.

Talking about lemon, I like to drink it in hot water first thing in the morning too.

 I am also spraying myself with Eau Dynamisante every time I pass the Clarins counter in Debenhams (more lemon) must get hold of a bottle soon it’s so refreshing and uplifting.

Smells I don’t like: frying cooking oil, cigarette smoke.

As far as alcohol is concerned I too haven’t touched the stuff since November ( first op). I do like my glass of Italian red with a tomato pasta but ever since they have made a link between alcohol and breast cancer I don’t know that I will ever want to go near the stuff again!

 

Member

Re: February starters 2019 - yes, we rule!

Implausible...quick question....what site did you get your fringe from? And what's your opinion of it? Worth getting? Xxx

Member

Re: February starters 2019 - yes, we rule!

Hello everyone xx hope you’ve been having a nice weekend so far 😊

 

Finally I have some nice photos to share! Courtesy of my friend he took them his phone has a better camera and he’s the Instagram nut! We took Dexter for a walk on the beach at North Berwick and my god it was windy! I should have taken a photo of myself when we stopped for a drink I was like a beetroot! 😂 was good to get out. Didn’t need the beach wheelchairs! 😂 No aches so far so feeling great 😁

 

47039F19-46E0-4BD5-AC67-BB7F3CB119D1.jpegRobert Louis Stevenson Treasure Island map and lighthouse

 

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3F70819A-9724-445E-B3E5-9DE5099EEC28.jpegBass Rock

 

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Member

Re: February starters 2019 - yes, we rule!

Hi everyone

Time to continue where I so abruptly stopped last night due to television scheduling. Back to chemo session one of my trial nurses came to see me in the waiting room to wish me luck and to make sure to contact her with any questions I had after  chemo and after surgery.  During chemo each of the 3 nurses who had dealt with me to date congratulated me on reaching  my 4th session and wished me all the best with the surgery, which was really nice of them. At least it made feel like I was a person and that they really do care☺. Onto today, managed to go to our friend's birthday lunchtime bash. It was lovely to get out, especially day after chemo! The only downside was I couldn't play skittles due to my PICC line🎳☹. Someone commented the other day about how many people they've come across who have been diagnosed with cancer. That happened today. Paul was talking to his mates about work, past and present , (I know some of you connected to the forces will understand what I mean) and I got talking to one of the other wives. She had her hair dyed a georgeous green colour ( not hedge like colour, sorry Implausible) and I told her I wished I had the courage to do something like that. Straight away she replied "that's me waving two fingers at cancer". It turns out she'd been diagnosed with skin cancer of the periomium- think that's how it's spelt- they think being cut during childbirth was the catalyst. And there's me thinking you only get skin cancer by being in the sun. Unfortunately for her though, despite responding to treatment well in 2016, the cancer returned  in 2017 and is stage 4 but  has not got worse due to on going treatments. And couple of tips from her, apparently you can get a card from Macmillan explaining you have an non-visible disability and cannot stand for long waiting in a queue, useful if you are attending a concert, ice hockey match, etc and need the loo when everbody else does. Just show the card to a member of staff and away you go so to speak. The other thing,  and this may be a sore point for some of you I know, but BA and maybe other airlines do the same, have recently bought in a scheme where if you go to the information desk you can get a thing to hang around your neck which alerts staff that you have a condition that means you can't stand for long periods so you may get priority going though check- in,security, passport conrol, etc. Not sure what, if any proof you need, but she did say if I had a PICC  line that would be proof enough. I'll have a look on- line later

Onto some of the posts, the ones I don't get around to replying or commenting on I'll catch up tomorrow. Acquiring more wrinkles and dark circles, yep that's me. The past few years I've occasionally  treated myself to Loccitane products from Provence. I came across it when booking our boutique  hotel in Istanbul for our 35th wedding anniversary which was part run by a French lady, and that was their complimentary toiletries. Paul said oh I can get that in Aix. After trying their products in Istabul I was hooked. Anyway I've been using their products, face and body, all of the time throughout chemo and my skin has remained soft but doesn't seem to have stopped the march of the wrinkles😩. As for an itchy scalp I have been using Johnson's kids shampoo and conditioner and  haven't had a problem. It may be worth a try.

Loving all the photos, please keep them coming, they really cheer me up. I'll try and take some myself. Our pair of ducks are regular visitors now and relaxing to watch, so I'll see if I can get a photo of them. 

Sandraindurham I'm so sorry to hear about the problems Veronica is having. I wish she could be treated here in Yeovil. Their trialing a new machine to help warm up the arm ready for a cannular. They put what appears to be a slim line hairdryer with a plastic bag on the end which is put over your hand and arm and switched on for a couple of minutes. Much better than sticking your hand in a bowl of water. The other thing being trialled in the hospital, my ward is still awaiting one, is a scanner which will scan for deeper more suitable veins into which a cannular can be placed. I really think persoally Veronica would be fine with a PICC line so long ad she has a good vein in her upper arm. Don't give up just yet. There's still a few more avenues to follow. 

Will catch up again tomorrow. Have a nice evening everyone. Love you all❤❤❤

PS Just had jab and it didn't hurt at all. Top marks to Paul🏅🏅🏅            

 

 

Member

Re: February starters 2019 - yes, we rule!

Hi everybody

 

Seems like ages since I have had time to properly reply to everyone.  Weds/Thurs/Fri were my work days this week and I'm not as quick as I used to be it seems, so I had to work quite long hours to get the project finished that I had volunteered for thinking it was 2 days' work at most!  I didn't finish it until past 10pm last night. Yawn.

 

I know I could have let it run into next week, my boss totally would have understood, but you know what personal pride is like, it's a bugger!

 

So yes I've been checking in with you all but this is my first chance to do a long catch up....

 

Sonia.... are you actually going to brave the swimming pool yourself or just watch?  I checked again with my onco when he phoned me the other night but he is still banning me from swimming until after radiotherapy.  That's months yet!  I miss it so much Smiley Sad  did your onco give the all clear?  Maybe mine is just being over protective?
Nice of your birthday to fall in your "good week".  Mine too.  Little pleasuresSmiley Happy
And how was Dumbo?

 

Edinbird, hope that bath sorted out your aches and pains, and have fun at the beach!!  

And that survivor guilt thing is weird isn't it.  I saw on Facebook this morning that the best pal of one of my friends has passed after his own battle with cancer (bowel).  I want to pass on my condolences but I don't want to make everyone feel awkward  because they all know I'm going through it too.  And although his chemo was palliative and mine is altogether less scary, I think they lump it all together in their minds.  So either they now think I'm dying too.  Or those that were closer to him than me might be thinking "why him and not her?", given he was 10 years younger.  It's awkward isn't it.  So I just didn't comment:/

 

Susie well done on conquering #4 Smiley Happy so glad it went well for you

 

Sandra, blimey girl I feel so bad for you and for V Smiley Sad  it really does sound like they overbooked that chemo session!  Really really hope that things go better on Monday.  And definitely talk to them about a line or a port.  Even a line should be fairly safe at night as you wear a kind of elastic bandage over it and that should stop it being pulled out in the night..

 

Just saw your latest post, and looks like you might be skipping Monday.  It does sound like you could do with taking a breath and having an urgent chat with the oncologist.  Things are not going well by anyone's standards Smiley Sad

 

Rosina, I just looked into that Penny brohn centre in Bristol.  It looks good.  Bristol is a bit of a hike for me to do something regularly though, and besides the art therapy sessions are during the work day so I think I've missed my chance for stuff like that now I'm back working on all my good days....  didn't think that through Smiley Happy

 

Doesn't seem to be anything like that in Swindon though.  I had a good look.  There is art therapy but only private/paid, and it isn't cheap. 

I am thinking of paying for 6 to 8 sessions of counselling, though, once this is all over.  Just to get my head back on straight and to help me look forward.... 

 

Marlyn  I already have all sorts of anti wrinkle serums and creams but I stopped using them all when I started chemo on the onc's advice.  He said my skin would be super sensitive and I shouldn't use my normal routine just a hypo allergenic moisturiser like simple or dove.  Maybe that's why I look so rough! Maybe I could try to sneak my usual routine back in for a day or two and see if it causes me any problems..... 

 

And I can't face the thought of alcohol either.  I haven't had a drink drink since before Christmas! Will make up for it when this is all overSmiley Happy

 

 

Ocean, your photos, as ever, are absolutely gorgeous.  They really brighten my day whenever you post them.  I'd reciprocate as I'm out on a walk now myself, but, well, Swindon is much less pretty!20190413_131703-picsay.jpgIn case any of you want to know what Whsmith head office looks like....

Funny you should say about your port being less visible.  The surgeon promised me that it would barely show - but here I am, looking like an android Smiley Happy I don't mind it though.  They don't give me any fancy anesthetic wipes for when they use it, mind.  They just tell me to take a deep breath as the funny little needle goes in.  It hurts for a second but they have got it first time each time so far, touch wood, and it is way less pain than I would have to endure if they were faffing about trying to take blood the old fashioned way or fit a cannula.

 

Seaside.... I love going to "paint a pot" Smiley Happy  we used to have them come into my work every year as one of the activities for our annual summer party.  Sadly the new owners don't seem to be such fans of fun, so we haven't had a summer party for the last 2 years Smiley Sad  here's what I made at the last one Smiley Happy

20190413_135056-picsay.jpgYes it's that raccoon again! And classy chipped chemo nail polish Smiley Happy

 

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I've never been to the hockey playoff weekend, either at Cov or Nottingham.  I'd like to one day.  Not that Swindon often get there!  Even this year when we were doing really well all season, no Coventry for the Wildcats.

 

MBJ I'm happy to hear that you are feeling so well.  As you say, long may it continue Smiley Happy 

 

Marlyn, yay for the chink of light Smiley Happy  you'll be on the homeward stretch soon!   Your view is amazing!  Wow!!!!

 

Right, I think that's me caught up Smiley Happy

I'm feeling pretty good today, touch wood, more energy than usual.  I've already been out for a nice walk, now I'm going to try to make a couple of hours progress with the comic I'm working on, and then this evening I'm going to risk a visit to the cinema to watch Pet Cemetery.  (It is my low immunity week but when I booked the ticket it looked like it is going to be pretty empty so I should be able to sit away from other humans)

And tomorrow, hopefully, a day out in Bristol.  Fingers crossed!

Unless I wake up super sleepy again.

Love to all

Sarah x






MBJ
Member

Re: February starters 2019 - yes, we rule!

Dear Sandrainduram

The issue with the vein is that it tissued, it's when the fluid is going into the tissues instead of the vein and yes it is painful. It often happens when an IV has been in a few days and the needle moves out of the vein. The swelling is because the fluid has nowhere to go. The nurses should have realised this had happened straight away. 

Before you both decide on whether to stop chemotherapy do you know how much % benefit Veronica is said to be getting from it, for example in 5,10,15 years. I don't know if you have looked at it and indeed it is not for everyone but you can put Veronica's details such as age at diagnosis, tumor size etc into the Predict tool you will easily find it on line. When all the details are added then it gives the % benefits of chemotherapy, and hormone therapy. 

I realise you might have this information already, but it's just a thought. I used it and you know I have withdrawn from chemo, but I am 65 so in a very different situation. However although I made this decision I still worry that I have not done enough ( part of me even thinks I should have suffered more to make me feel I was actually killing the bloody thing if it was lurking anywhere, that Mountain Lion again).

It's not an easy or straightforward decision to make as you know. But the most important thing is that you both weigh up the benefits of continuing chemotherapy in the longer term with the risks and suffering it is causing now in the present.

I really feel for you both why is life so hard. 

Member

Re: February starters 2019 - yes, we rule!

Marlyn, I can only give advise, but I told Veronica that she should cancel her Monday appointment, call the onco and say that she cannot proceed because there has been loads of mistakes and we cannot trust those Chemo nurses.

I think it is high time to put on the table the possibility of not going further with Chemo.

Member

Re: February starters 2019 - yes, we rule!

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Re: February starters 2019 - yes, we rule!

Oh wow Sandra! What's the next step?? Poor V ...no wonder it was all so painful...xxx

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Re: February starters 2019 - yes, we rule!

Loving all you pics, will try and post one of the view from my living room window....

 

yes, I'm using Kate mciver and really like it...my skin doesn't seem quite so grey....

 

just wish i could could find something for my sore eyes...the drops from onco only give me relief for around 20 mins....

 

cant believe ( bloods permitting) this time next week cycle 4 will be done....at the beginning of all this I couldn't see the woods from the trees, but now I see a small chink of light? 

Member

Re: February starters 2019 - yes, we rule!

It's so great to see these photos and Rosina's links! It brings a sense of normalcy! 

OK, update and scary stuff: we spoke with a private nurse and she was horrified. It seems that Veronica's vein was not secure and when she complained about extreme pain they should have taken out immediately, but instead they just said 'they were happy with it'!

The saline came out of the vein and later on Veronica's wrist was swollen. The private nurse said if Veronica had them proceed with the Chemo she would be completely burned inside.

She also said that they did not comply with NHS procedures, when there is pain a canula must be removed immediately.

I think that all of these went far enough and it is time to put a stop.

Member

Re: February starters 2019 - yes, we rule!

I used that app for months and earned loads of the coins but there was never anything to swap them for so I ended up uninstalling it.  Glad to hear it has improved.  Maybe I'll put it back on my phone.....

Member

Re: February starters 2019 - yes, we rule!

https://www1.sweatco.in/i/diana936426 Check out this free app 👆 It pays to walk!

 

My son installed this on my phone. You collect ‘sweatcoins’ whenever you walk outside 🤪

You can then exchange your coins for ‘local offers’ so far I could have had a free drink at my local leisure park or a birch box or Netflix something or other.

 I am saving my sweat coins.

There are holidays with Thomas Cook when you get to 20,000 coins.

So far I have 113. 

Every 1000 steps = 1 sweat coin.

 I find it quite fun.

 I am on the ‘ shaker ‘ level meaning that I am capped at 15,000 steps a day.

MBJ
Member

Re: February starters 2019 - yes, we rule!

Good morning lovely ladies

All your pictures a fabulous darlings, good enough for an excebition, I am sure they would raise money for charity. 

Sandra I am so sorry that Veronica is suffering so much it must be so hard for you to see your daughter in distress all of the time. I don't know where she would be without you. 

I am trying to settle back to routine after my daughter and her family returned to Abu Dhabi. It's funny how quickly I get used to them being here. Last Saturday were were out shopping and having lunch, this Saturday it's cleaning ☹️. 

I am feeling well, hopefully I will stay this way for a long long time. I just hope it's not the calm before the storm. 

I am glad to see you are all coping as best you can with the chemo schedules, it will all soon be done and dusted for you. I know some of you still have surgery to come, yes it's not pleasant but it's a much more 'normal' thing to go through if you know what I mean.

It's another lovely day here in Wales, sunny but very windy - not very wig friendly😃.

Have a good day girls.

Member

Re: February starters 2019 - yes, we rule!

Morning lovelies,

 

Wow, Ocean those pics are stunning!

 

Rosina you are an inspiration with all the activities you do. Thank you for sharing. I'm going to enquire about art therapy in my area as it sounds wonderful. Meanwhile I might go to our local pottery place and decorate some plates. That's something I haven't done for years.

 

This weekend it's ice hockey play offs and although my team didn't make it, I would have gone along to Nottingham for the party. But as I'm in week 2 I decided not to risk it. Will watch at home instead.

 

Here's a picture I took at the lake yesterday. I met with some friends and we walked for a while, then had a drink outside the pub. It was great.

20190412_135825.jpgA cloudy day doesn't do this justice. It is a nice lake!

Hope you all have a good day.

Sar xxx

Member

Re: February starters 2019 - yes, we rule!

Gorgeous pictures Ocean21.

Thank you 🤗

Re. Relaxing music I rate anything by Deuter artists/music-by-deuter/

You can find many of his tracks on YouTube.

 I love his ‘mystery of light ‘

https://youtu.be/HWTGR3N2wl0

Off to do my stretches.

Have a good morning all.

Rosina

 

Member

Re: February starters 2019 - yes, we rule!

0AAB056F-B631-47B5-B647-A0C614D5485F.jpeg5A80D1C5-FCF1-4966-B3AE-B579AB655849.jpeg7EE00CB6-33CB-4D17-A515-43E9C5CCDE35.jpeg95C59A7D-523B-449A-BBA8-4E3BD993F635.jpegDaisy, daisy..

Member

Re: February starters 2019 - yes, we rule!

Morning lovely ones,

Sarah, your port is much more visible than mine . Mine isn’t so high up.

I totally  agree that it makes access less stressful.

 

The only stressful thing has been the technique of the nurses putting it in. The nurse who accessed it for the first session has been the best by far. Firm but gentle. The last two , technique wasn’t great. Second one left me feeling bruised days after chemo. Third nurse , took three attempts to access it and only got there after making me lie flat while she had a good poke  about.

 

Nurses technique aside, for me it’s one less thing to worry about as mine veins can throw tantrums too.I like it. It was included in my treatment plan from the beginning. When I go in for sessions I can’t recall seeing anyone who doesn’t have one in.

 

I have a prescription for a patch that has an anaesthetic cream in it. I have to apply that over the port an hour before my session. Totally doable.

 

Agree there’s no way that they can be ripped out. 

 

Hope that everyone is doing better. I actually managed yesterday without taking a nausea tablet.They’ve been a godsend for when the nausea has been horrendous.

 

Hope also that your plans for the weekend include lots of rest and relaxation.

 

Some photos I took in the village park yesterday.F606838E-D585-4619-90C9-888B2D7097A1.jpegF9D68F7B-85B9-4B8C-9376-EE5BC213C87E.jpeg804827DF-6DA2-4E7F-BEB8-098213124F85.jpeg6DBB9EE5-7D62-4D31-B52D-7D5571B55EA0.jpeg477FF663-A2B8-4A45-9B9D-8F5B93DD1BD5.jpeg

 

xx

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Implausible, thanks for sharing the port pic. I have been wondering what they were. I think I may be heading towards having something rather than a Canula inserted each time. I think my veins are giving up. I will see what happens on Wednesday.

Sandra and Veronica, you poor things, my heart goes out to you. I listen/watch relaxation, meditation videos on my mobile with earphones whilst having chemo to block out any unwanted noise. I’m sure Rosina could suggest some good ones to listen too.  

Facial lines, I’ve started using the Kate McIver serum recommended by the lovely Marlyn I believe as I was horrified how lines my face was looking. I’ve only been using it a week but I feel my skin is looking a little less dry, more plumped out and a bit less grey. I also use Charlotte Tilbury’s Magic Cream on top. It’s all a bit pricy but I’ve justified the outlay by telling myself how much I’ve saved by not drinking alcohol for months  (only because chemo has turned me off it. I’m sure I’ll be making up for it when I’m finished). 🥂🍸🍷🤪. I use them both sparingly in the hope they will last a long time.

SusieB well done on surviving another chemo session love. You are doing fab. 

Sonia28 did you manage at the swimming pool? If I get too hot it makes me feel panicky at the moment and I have to start  ripping clothes off as quickly as possible. I hate to think what’s going to happen when the weather heats up. I’ll be stripping down to my underwear in public places. Lol. 

Edinbird, you can’t be 40 in August you look 10 years younger!!! What’s your secret? 

My birthday is early May. 60th....yikes. I should have been celebrating with a group of close friends in Amsterdam but we’ve had to postpone of course because of the barrying chemo. I hope I’m well enough to at least go for a family meal out but as it’s Bank Holiday Monday, everywhere will be heaving and full of germy people. 😷. I think all this neutropenia is starting to give me a bit of a phobia about the general public. I bet I’m not the only one eh?

Sending positive vibes and love to each and every one of you. It sounds like a few of you need big {{{hugs}}} too. 

Xxxx

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Re: February starters 2019 - yes, we rule!

Oh, hell, I am going to speak about this on Monday, thank you Sarah.

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Re: February starters 2019 - yes, we rule!

But there's no way she could rip out a port, it is completely under the skin.

 

Here's mine.  It has absolutely no question been a total life saver for me.  My veins are horrendous.  I could never in a million years have had chemo through a cannula.  

20190412_220656-picsay.jpgExcuse cleavage!!!

 

 

I really think you guys aren't getting the best advice Smiley Sad Smiley Sad Smiley Sad

 

 

 

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Re: February starters 2019 - yes, we rule!

Hi Implausible, thank you, they say that the IV team will come this Monday to find a vein in her arm and it will be easier for her.

Picc line or port will be dangerous because she suffers from night terrors and sleep disorders and she could rip them from the body, so we have to rely of the expertise of those nurses... I think that today was very strange, they should not book so many people with just two nurses, that noise, everything... it is like a really bad nightmare.

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Re: February starters 2019 - yes, we rule!

Oh my gosh, just catching up.  Poor Veronica!! Smiley Sad

 

I know she has had problems with the cannula  before.  Is there any way she can have a picc line or a port?  They can't keep hurting her like this, her veins have had enough!

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Re: February starters 2019 - yes, we rule!

Daisydi, thank you, it is the gift that keeps giving!

About wrinkles, how about buying royal jelly from a bee-keeper and apply directly?

Rosina, you and me, both, I cannot believe this is happening and I cannot wake up!

I am trying to do breathing sessions, align my soul with nature, release negative energy to create an internal balance.

Seaside Sar, thank you, both of them hugely welcome, believe me,

Edinbird, a break... yes, please Smiley Happy. Now, listen, those thoughts are neither good for you or helpful. That is how survivor trauma starts. What you have is completely different. Millions of people die every year from sepsis. I had it for a year, coming and going until they discovered that I had a kidney full of pus and killing me. I am here. Period.

Ok?

Sonia28, thank you, honey, I cannot believe the pain that Veronica had to endure today.

Marlyn, yes, she has to go back this Monday, me and her dreading this, but..... she is so courageous, I had to bite myself to avoid start crying there.

Thank you all, this forum has been helping me so much.... nobody understands, I keep hearing people saying things that are so removed from what chemo is!

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Re: February starters 2019 - yes, we rule!

Sorry to hear of your traumas again Sandra.  Must be so frustrating for you both.  Will it ever end for you.

 

Rosina I have now started putting organic johoba oil on my face at night to try to fill in the cracks. ...

Member

Re: February starters 2019 - yes, we rule!

Hi Implausible, 

I am very fortunate in that my local hospital has a small Cancer Support Center at the far end of the car park.

 It is called the ‘Olive Tree’ it is a charity ( not Macmillan) , I think there is a connection with the Penny Brohn Cancer Support Charity that is based in Bristol.

The art therapy is one of the many ‘complementary therapies’ available.

The Center runs completely on donations and they do check that you actually have cancer as I guess members of the public try to access what is on offer!!!!

Penny Brohn does have a website and they have what looks like an amazing residential facility ( in our just outside Bristol).They have all sorts of programmes running throughout the year.

Worth checking out.

Sandraindurham I continue to read your posts in disbelief.

Marlyn how is that facial oil going ?

Does it smell nice ?

Goodnight for now.

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Re: February starters 2019 - yes, we rule!

Haven't noticed any wrinkles. But maybe that's because my eyesight is extremely blurry 😂🤣

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Re: February starters 2019 - yes, we rule!

Susie, well done. Another one down. Take it easy and let everyone look after you. X

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Re: February starters 2019 - yes, we rule!

Sandra, what a nightmare. I misread your post from this morning and thought V had her chemo. Didn't realise she hadn't had it. So sorry to read what happened today.

 

And as for the rude replies to your job enquiries, how awful! 

 

Sending you both hugs and prayers. X

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Re: February starters 2019 - yes, we rule!

Sandra I can’t believe every time there is something... you guys need a break and like right now.

 

Hmm was thinking wrinkles aren’t happening but eye bags definitely are! To be fair they always were with me... but I think I look like I’ve gone 12 rounds with Mike Tyson most days now.

 

Forgot to say earlier just as I was about to head home from my friends house he found out someone he knows died of lung and liver cancer after being diagnosed a month ago... I needed to get back to work but I had to sit and wait whilst he jabbed through tears at his phone to post on Facebook and Instagram. I’m sat there feeling like a lemon, a fraud because I have cancer but I’m still here... horrible. He then proceeds to try to find his music and gets really frustrated when it takes him several searches (bestie is in the rap scene) and I have to wait to hear a couple tracks. I’m then blubbing my eyes out. Guy was similar age to D so only about 32. I’ve told him to make a playlist for the car tomorrow. Makes you feel so lucky but so guilty 😢

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Re: February starters 2019 - yes, we rule!

Sandra, I'm so sorry that Veronica had such a tough time, It must be so hard for you to watch. Sending you all cyber hugs xx



 

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Re: February starters 2019 - yes, we rule!

Oh Sandra that just sounds horrendous, do you have another date? Is it next week? Maybe more time will be good for her? It makes me so grateful to the unit I attend, they can't do enough for you....I wish v could come with me to have chemo together....xxxx

Member

Re: February starters 2019 - yes, we rule!

Hi girls,

Sarah, Marlyn, Seaside Sar, Veronica did not have her chemo today and it was a bit of a nightmare.

We got there, loads of people in a tiny room, just two nurses for everyone, then they hurt Veronica's arm whilst trying to get her blood pressure, next they put the cannula in, Veronica started to feel a lot of pain in the vein, up to the point that she had a shut-down, I was asking her and she was not replying, they left her in pain quite a bit of pain when I was saying that it had to be taken out until I said 'right, she is in pain something is wrong, this has to be taken out now'.

It turns out that her tiny vein in her hand is quite traumatised because she was badly hurt when she had her mastectomy, it had two chemo sessions, they draw blood from there as-well so they shouldn't even insisted after she said she was in pain.

she wil have an IV team next time to see a 'good' vein to have her next chemo but it was a bit of a nightmare, seeing my daughter in pain, almost collapsing, lots of noise, phones ringing like crazy without people picking them up......

God..... this is hell!

Girls, I was so humiliated by this university this week when I asked to access a hardship student fund, I have sent several CV to charity orgs and I got some really rude replies, this was just the cherry on top of the cake!

Member

Re: February starters 2019 - yes, we rule!

Hi all

How many posts have been put on here today? Just popped in for a quick read📃, so I thought, and find its more like a novel📖 . No wonder we've over 3000 posts. So for now I'll  tell you about my day and pass on a bit more info for you.

Any today's session wasn't too bad except I didn't feel too great again just like my 3rd session🤢. So basically got home, got myself organised,  had shower and washed manky hair then went to bed for a few hours. Just had jacket pots, cheese and beans preceded by one of my 'just in case' anti sickness tablets so feeling a little better now☺. Quick update re cold capping with T, still need 30 mins prior to start of chemo but only 20 not 40 at the end😊. On the down side the bc nurse confirmed that the T will take an hour to go through, sorry I don't know if it's the same for everyone. I'll be on C aswell.     

Sorry got to go now, catch you later, Jamie's on the Eastenders followed by News For You. Speak to you soon. Love you all xxxxx 

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Re: February starters 2019 - yes, we rule!

Oh also meant to say my birthday is in May, and if chemos all go to plan it will be the day before my final chemo. 

Member

Re: February starters 2019 - yes, we rule!

I know what you mean about looking older, and the dark bags under my eyes (no pretty).

I dont know about anyone else but I get breathless walking anywhere where my pace in faster than a snail. 

 

Ive had a nice day today, me and my daughter went to watch dumbo. It was lovely to spend some time with her on my good week.  I get to spend the weekend in the swimming pool watch my youngest swim, i just hope its not too hot, which it will be, as I'm not sure I'll make the whole session. 

 

 

Hope everyone has a good weekend.

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Re: February starters 2019 - yes, we rule!

Aw I don’t think I’m getting wrinkly... maybe getting chemo under 40 is the answer? Btw that’s in August, my 40th. How soon after surgery comes radiotherapy? Guessing I might be getting that for my birthday!

 

My bones feel rather old today though. After leg ache this morning my friend needed a lift to the doctors and after we ended up walking round one of the big parks in Edinburgh for a bit cos the doctor wouldn’t give him his medication and he was angry... now my left hip is really sore 😕 I have a bath lined up though with new lavender salts so hoping that does the trick as we are planning on going to the beach tomorrow!

Member

Re: February starters 2019 - yes, we rule!

Daisyd,

 

oh oh yes indeed, I have just this minute flossed my teeth and the wrinkles around my mouth stayed put....I read somewhere that  chemo ages us by 10 years, by looking in the mirror I would say 20 years!!!! X

Member

Re: February starters 2019 - yes, we rule!

Daisy. 100 percent.  I look at least 10 years older than I did at the start of February.  Very wrinkly around the eyes and my neck looks terrible.

 

I can barely stand to look in the mirror.

 

I'm really hoping it is temporary!

Member

Re: February starters 2019 - yes, we rule!

Hi all can I ask if anyone else is developing deep lines on their face?  I'm looking more like a 100 year old now.  By the way its my birthday on 26th April too.  What is it about us April babies????

Member

Re: February starters 2019 - yes, we rule!

Hi all

 

Holiday thing.... yup I have already emailed loads and sent registered letters etc as well as endless calls.  But no I haven't used a solicitor because I'm determined I will eventually get it sorted by myself and I don't want to pay a legal fee Smiley Happy  MBJ your public shaming idea is a good one.  I'll give that a go!

 

Rosina, I'm a little jealous of your art therapy sessions.  I'd love a bit of that!  I paint nearly every day anyway so maybe I'm already kind of doing it Smiley Happy  How do you find out about these things?  The only thing my BCN told me about was reiki, which I've got no interest in, and she gave me a leaflet about the look good feel better sessions.  About 8 years ago I saw a TV programme about art therapists working with soldiers with PTSD.  I was so inspired that I decided I was going to pack in my job and retrain as an art therapist and I contacted the organisation in the programme.  They rather bluntly replied that I was too old and it wasn't worth their time training me up!  I was only in my early 40s, the cheek!!  I wonder how my life might be different now if they had been a bit less rude Smiley Happy

 

Sandra....  I hope Veronica got through session 3 ok.  It sounds like her anxiety level has reached the sky and that can't be helping Smiley Sad   I really think there ought to be more support on the mental health side for those of us going through chemo.  They have the physical health side mainly covered but we are all struggling emotionally too :/

 

I won't wish her a "happy" birthday for tomorrow as people keep doing that to me (mine is next week) and I just want to snap at them that it is hardly going to be one of my best!!!  Smiley Happy  but here's to a tolerable one!

 

Oh and Sar.  I hope you are still free of signs of having caught toddler lurgy.  Little plague carriers that they are! Smiley Very Happy

 

I'll reply properly to everyone else later,  am typing in a hurry walking round Tesco and I don't want to stay in here longer than I have to in case some bugger sneezes on me!

 

Sarah x