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Starting chemo May 2014

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Re: Starting chemo May 2014

Hello Ladies,

 

First Radiotherapy done and dusted so 1 down 24 to go 🙂 Although I found Mount Vernon lacking in explaining things such as what products to use on skin, I did find them really efficient yesterday. Although I thought I would lay on a bench get zapped for 10 minutes and it would be over, but the session actually took 45 minutes as they took a long time arranging me into a very uncomfortable position, then popped in and out saying most of it done now !

Although I whinged about having evening sessions the parking was a delight ..Loads of spaces, but the downside was getting caught up in rush hour which doubled the time of our journey home. Hubs and I ate dinner prepared by our lovely daughter and promptly fell asleep lol.

Ladycroft thanks for the tip re parking tokens and the booking in card as well.

Wax2014 sorry to hear of your loss.

Hoping everyone else is doing okay xx Ruth xx

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Re: Starting chemo May 2014

Linda really sorry to hear about Ray, it must be very difficult for you and stir up emotions that you'd rather not think about. So pleased to hear that you're spoiling yourself it will definitely make you feel better.
My hair is growing so quickly these days and I now have a fringe again. It was lovely being able to ask my daughter if it looked better with my fringe brushed down or swept to the side, I have options and choices. 😄
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Re: Starting chemo May 2014

Sheryl..I wimped out and went to the hairdressers , I was to worried that with all the grey it would turn pink ! She got in touch with the rep they use and asked his advice..he said after 4 months as long as there was enough hair and it was not brittle or damaged it would be ok to use most dyes just avoid peroxide. I had a skin test too just to make sure .
I'll have it done again before I go away then start doing it myself with something from boots as it will be cheaper, I'm also having my eyebrows tinted and waxed on Tuesday hoping that I may be able to give more definition to my face as my fringe is soooo short ! and its an excuse to spoil myself ...trying to lift my spirts..
Still waiting results from my MRI but really trying not to worry, I lost a dear friend to Cancer last week and his funerals on Wednesday...so my minds been on that. He was such a positive man right till the end and his support was invaluable to me....its so not fair ..1st Dad now Ray xxxx Linda x
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Re: Starting chemo May 2014

Linda so glad you're feeling confident now you've dyed your hair. Which dye did you use in the end.
Regarding the flu jab I had mine last month but I get them every year as I have no spleen. My stepmum had hers done at sainsburys and just had to pay £10. Most chemists do them and I think it's worth the money especially as our immune systems probably aren't 100%.
Gill it was lovely meeting you too. I've proposed on our Facebook group that we meet up in London on 16th May 2015 to celebrate a year since we started chemo. It would be lovely if we can get as many of us together as we can so please put the date in your diaries. X
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Re: Starting chemo May 2014

Gill, when I took my mum for her jab I asked if I was eligable for one this year following the diagnosis and was told that I didn't meet the criteria ! Strange .....
I've taken the plunge I'm now chocolate brown... no grey hair ! It has improved my confidence no end going out now with no hat on for the first time ....wish me luck xxxxxLinda xxxx
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Re: Starting chemo May 2014

GMC - Sorry I mislead you there, I have a flu jab every year as I have an auto immune condition, so it wasn't suggested to me because of the cancer diagnosis. xx Ruth xx
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Re: Starting chemo May 2014

Good Evening Ladies

 

Hope everyone is ok and looking forward to the weekend - especially those on rads who will have a 2 day rest!

Had a lovely morning this morning with Sheryl and we chatted for hours. It was great to meet face to face.

My portocath wound is healing now and looks to be infection free so all being well my op should be on Tuesday. Still on anti-biotics so fingers crossed nothing goes wrong this time!

Ruth, no-one has suggested a flu jab to me so will investigate that after the surgery as it seems a good idea as immune system would still appear to be compromised.

Ladycroft and Jj1981 - how are you geting on with your new pills? I'd been on Tamoxifen before so they'll give me something different this time but not sure what yet. Linda, I hope you can work out which brand suits you best. I must have been fortunate as no side- effects other than those brought on by the blocking of oestrogen and triggering of menopause. Glad my routes for rads won't be anywhere near as far as you've had to travel.

 

Take care , Gill x

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Re: Starting chemo May 2014

Hi Ladies,

 

Ladycroft - I have bought my 25 parking tokens already, thanks for the tip re booking in card, I will ask for that on Monday. We gave our c/park ticket to someone as we left, as it cost us £5.20 and we only there for half hour! It said in the letter we could be there for upto half a day 🙂 I have to say no one at Mount Vernon told me about creams and not to use deo etc, so I am finding out through trial and error here and through another few pals going through bc too. Whta is Anastrazole>? I havent been told I will be put on any further meds after Radio? I asked to change my appts but they wouldnt let me saying I would have to delay my treatment to do so which I didnt want to do at all.

Sodastream - I cannot remeber now who told me not to colour my hair, it was way back at the beginning as they also told me not to blow dry or use stying products.Also not to use nail polish on any nails, so I was a good girl and listened and as I still have my hair and all nails I guess it must have worked...I ve gone grey though so roll on next year when I can dye my hair once more 🙂

Everyone, t you for your good wishes, I just want to get going now on Radio and cross one day off at a time, then in   Jan I am having my portacath removed, so I have to have it flushed every 6 weeks in the meantime. I had my flu jab yesterday as I was told not to have it whilst on chemo.

 

We are getitng there ladies slowly but surely :)) xx Ruth xx Good Luck all

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Re: Starting chemo May 2014

Hi Ruth, I got my appts changed at Mt Vernon as my husband works nights . Make sure you get the parking discs (£1 each) you'll often find people leaving will give you their car park ticket. Also ask the reception for a booking in card ,this'll save you lots of time when it's busy .

I was in LA9 for most of my treatments and they were all lovely. I finished my treatment on 10th October and it took a good two weeks for the 'burns' to heal. You tend to meet the same people in the waiting room  at all different stages and different types of cancer- really brings it all into perspective,but we found them all to be upbeat and friendly .

I'm now on anastrazole and didn't start it until afer the rads. I thought I had enough going on without needing more side effects

Good luck x

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Re: Starting chemo May 2014

I got my prescription for tam yesterday but npt lookng forward to starting it. I hated hot flushes durkng chemo and just sartng to feel normal again i dmt want any more side effects.
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Re: Starting chemo May 2014

Hi...glad to hear you both have your radiotherapy dates sorted now and will be finished by Christmas. It will fly by once you get into the daily routine. Travelling was the worst for me , as with you Ruth mine was a 50+ mile round trip and took around 45 mins each way. I was also given my tamoxifen to take when I started my Rads. Blumin stuff! Watch the brands , I don't care what the oncologist says it does make a difference. I've had two brands so far and a different one for my third packet to start next week, it appears its not always the same brand that my chemist gets hold of. Once I find the best one I will insist that they pre order it for me! Play around with the time of day you take it as this can help with when and how you manage the hot flushes..should you get them and boy do I .
Hugs Linda xx
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Re: Starting chemo May 2014

Hi Ruth. Wow 54 miles is some journey especially as it's for 5 weeks. Hopefully once you've started they'll be able to change the time for you so you won't get stuck in so much traffic. I have my planning and scan tomorrow and ten start on 24th so will be finished on 12th December. Mine is late afternoon and I too will get caught in traffic but can't complain as it's only 2 miles from my house (if my hip wasn't so painful I'd probably cycle it).
Did they say why you couldn't dye your hair? I'm lucky that chemo didn't make my skin suffer. I didn't ask anyone I just did it as I was fed up with being grey. My hair is growing really fast now and my friend that I hadn't seen for 10 days was amazed at its growth.
I'm also meant to be starting tamoxifen but no one has mentioned when I will start it. Just think with the run up to Christmas time will fly and before we know it treatment will be over. X
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Re: Starting chemo May 2014

Hello Ladies,

 

Well I had my planning meeting at Mount Vernon today, The journey is a 54 round mile trip...more than I thought, Hubs and I got there in half an hour.............then spent a further half an hour trying to park it was absolutely diabolical !!!! I was late for my appointment as a result but then went straight in for my scan, given my timetable to begin November 17th, finished by December 19th, we were on our way home within half an hour ! So 5 weeks of stress to look forward to, especially as all my appointments fall during evening rush hour...oh joy !

I had a tattoo done to mark areas on my boob...whatever that is, then got called back in for them to take further photos.

Sodastream...when I asked re hair colouring I was told in no uncertain terms not to use any dyes on my hair until all my treatment is over? No wonder we get confused with all the different advice we are given !

I am also about to start my 5 year prescription on Tamoxifen, can thid be taken whilst having Radio? I have received conflicting instructions regarding this and need to calrify with my oncologist I think 🙂

My hair is growing back fast very curly and fluffy...it is usually dead straight, I never did lose it all, it just thinned out a bit.

I hope you are all doing okay, I can't even see the lighnt at the end of the tunnel just yet with the 5 weeks of radio looming xx Ruth xx

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Re: Starting chemo May 2014

Good evening ladies

I hope you all had a good weekend and ready for another week although as I'm signed off til jan 1st all the days seem the same and I never know what day it is! Lost track of the no. of times I've put the bins out in error!

Linda, I really hope you hear some good news from your scan and good luck if you use Sheryl's dye. Mine isn't really long enough yet to worry too much but I will be using it if it's too grey. You really were down on the 5th but sounds like you're feelijng a bit more upbeat now. We are all too aware of having those dark days and this forum is wonderful for sharing those feelings . Love the response from Ladycroft - ting a ling a ling!!! Still wanting to move to France Jan ?

JJ1981 - glad to hear your numbness comes and goes as mine is constant. Hope for me that it will go sometime?

I guess your radio starts soon Ruth. Good luck with it and hope everything is going along smoothly for you. Will you be done by Christmas?

I'm still on anti biotics to clear up the infection in the wound following the removal of the portocath. If it's ok I'm pencilled in for my op on the 18th but I'm not holding my breath ! Heard last week that the dental surgery where I work 2 days a week has been sold but they hope it will still run in the same way. Not sure the new owner will want to keep me on their books as long term sick! Really hope so but I can't see me working again til after rads and no idea when that will be!

Sheryl, you must be starting your rads soon too. Hope you had a great holiday,

Take care everyone

Gill XX

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Re: Starting chemo May 2014

Linda I got the dye from http://www.danielfieldmailorder.co.uk/
I was feeling really brave and ordered a vibrant colour. I left it on for 45 minutes and it covered all the grey that I'd covered with dye (1 grey hair survived as I missed it). I did a skin test the day before just to check for allergies. It does cost over £10 but what you can do and I will next time is use only half the powder and mix with half the amount of water so you get to use it twice. X
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Re: Starting chemo May 2014

Ladycroft, soooo glad its not just me, in the nicest way of course! You've made me smile with your little ditty and I needed that .....Thank you so much xx
Sodastream..I think you may have just what I need in the hair dye..I will try it , it may well make me feel better and help create the 'new me ' .where did you get it from and did it do a good job covering all the grey?
Today wasn't as bad as I feared, they did the MRI without contrast and managed to get good images ..so no needles ...yeah. It lasted 20 mins and I kept my eyes shut all the way through as I knew if I opened them I'd panic ..its the one 'fairground ride' they use that I hate and I've been on them all now ! Just got to wait for results next.
I went to my friends house afterwards for tea and cake which was lovely.
I will need to talk to my oncologist as to what happens with the bone scan, but I'll leave that till next week... I've had enough for now.
Hope everyone is ok and looking forward to the weekend xx hugs Linda xxxxx
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Re: Starting chemo May 2014

Hi Linda , I know exactly how you feel.If I hear one more person say ' you can put it all behind you now and get back to normal' ,I'll either deck them or go into meltdown! It's the same when I go out with wig and makeup they'll say 'You look so well!' 

I know it's hard for some to understand but it is frustrating as we don't know if we are cured or not. I've had some really down days recently ,it's been a month since treatment finished , having to face going back to work with people I've heard nothing from since I left in Feb and losing my mum 2 months ago ,I just want to pack it all in and go and live in France !

Hope your scan goes well and chin up (in my case since the weight gain it's 'chins'lol!)

AS long as we have an outlet for our fears and frustrations we'll get through one way or another. 

That reminds me of a song,no not Blondie,but Benny Hill...

 

 

Now if you're feeling miserable, if you're feeling blue,
Here's a little ditty that'll help to pull you through,
All the clouds will disappear, the grey skies turn to blue:
Just stick your finger in your ear and go ting-a-ling-a-loo.

Now suppose you've got the fell pest, the gout and goose's cough,
A severe attack of hiccups and your kneecap's just dropped off,
The surgeon says "We'd operate, but the anaesthetic's gone,"
You just look up and smile at him and say "You carry on."

"I'll stick me finger in me ear and go ting-a-ling-a-loo,
Me finger in me ear and go ting-a-ling-a-loo,
I'll just be like Nelson at the Battle of Waterloo,
I'll stick me finger in me ear and go ting-a-ling-a-loo. "

 

love and hugs to us all xx

 

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Re: Starting chemo May 2014

Hi Linda. No wonder you feel so emotional at the moment, it sounds like you had an awful day yesterday. I really hope the MRI goes well today. Did you drink enough yesterday as if you are dehydrated it makes it difficult to find veins. Just to let you know I dyed my hair using Daniel Field watercolour which has no ammonia, peroxide or parabens. I ignored the advice of waiting at least 3 months and did it 7 weeks after my last chemo. It turned out well and I felt so much better in myself without the grey hair.
Good luck today and let us know how you got on. Sheryl x
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Re: Starting chemo May 2014

Jj1981..I am with you completely ..feeling alone and emotional at the end of active treatment..I cannot get past that I have cancer...it may have been treated but it feels like the devil inside me, one that could rear its ugly head again and I have no control over it and its really hard to explain to others how I feel. All I hear is ..you can start to get back to normal now.....hey whats normal ? I look in the mirror and its not me looking back..one boob,no nipple, higher and nothing like the other one , a skin head ..grey at that ,where once there was long blonde hair. I no longer feel feminine let alone sexy having to deal with hot flushes and no sleep , pain and dryness down below to boot ....how do I pick myself up and get on with it??
Sorry to offload but its been a hard day..two hours ,one nurse ,two consultants , my arm and both feet and they still couldn't get access to a vein for the nuclear injection for my bone scan ! So I couldn't have it but have been told to keep my appointment for the MRI tomorrow ! Why they think because its a different hospital it will be any better tomorrow I don't know ..so I have another distressing time ahead of me being a human pin cushion again in the morning . .
Thanks for listening xxxx Linda xx
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Re: Starting chemo May 2014

I was thinking the other day do i know say i had cancer since ive had my op. but i think if you say you had it people are goj g to think its over and kts not as skde effects and fatigue a
Can last for some time plus the constant fear lf it coming back. I think im going to say im kicking bc ass to some people or in general im fighting breast cancer. My attitude might change soon amd i might want it to all be over and say ive had cancer.
My fingers and tles are still numb is goes away amd then comes back its weird.
No rads for me so i guess active treatment is now over
Im really emotional i wonder if its becuase it is sort of coming to the end of treatment and now j feel alone.
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Re: Starting chemo May 2014

Hi Ladies !

 

Chemo done and dusted it was a really weird feeling I can tell you ! The nurses and I had hugs and kisses and I gave them a card and a huge box of biccies for looking after me so well. I will see them now and again as I have to go to them to have ny portacath flushed every 6 weeks until it is removed, which wont be until January 2015 at the earliest. I think they were concerened about me going to Radio with an open wound.

 Blimey Radio sounds quite onerous with broken skin and blistering>? I knew skin got sore and only certain products can be used...I was worrying more about the daily round trip of 40 miles plus trying to park once I arrived there !!! Thanks for the tip re cool pads, I hope to get ahaead of the game and get these products in place at home before my radio begins after a 2 week break.

Thanks for all your good wishes ladies and I hope you are all coping okay as well xx Ruth xx

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Re: Starting chemo May 2014

Brilliant news Sheryl. I'm soooo envious but truly happy that you'll have all the treatment behind you by Christmas. How lovely to start the New Year with all that treatment behind you after all you've gone through.Probably means we won't be going to St Lukes together but I'd be happy to come and meet you for a coffee sometime. 

Ruth- hope you're feeling OK after your FINAL CHEMO. I know you'll be better able to celebrate once a few days have gone by but isn't it a great feeling to know you haven't got to have yegt another cycle.

Jan - I still have numb feet and it's really annoying. I have bought a pair of  "Hotter" shoes and boots as the soles are really supportive and as comfortable as anything can be right now!

Linda - well done for getting through the rads . Good luck with the last one tomorrow and glad you are getting  some relief from the cool pads. I shall have to remember that when my time comes! When I had rads 11 years ago the only relief was from aloe vera gel so it seems there are a lot more options nowadays thankfully. Linda- you asked what my op is and it's to remove about a  third of the breast as surgeon didn't get clear margins back in March . He'll make good the reduction to match other smaller breast.

I'm seeing the consultant tomorrow so hope to get some stronger anti-biotics to clear up this infection. The District nurse has told me to eat lots of honey as it's nature's natural anti-biotic.

Have a good evening ladies , Gill X

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Re: Starting chemo May 2014

By the time you read this Ruth you'll be able to say that you've finished chemo, I bet you can't believe it's finally over.
I've just been up hospital to see doctor re starting radiotherapy and was delighted to hear that because the chemo had killed the cancer in my nodes they only need to do 3 weeks of radiotherapy which will start in about 4 weeks. That means L'll be finished for Christmas which seems unreal considering what I was expecting at the beginning of my treatment. There's a bright shining light at the end of my tunnel and I hope it's not too long before everyone gets to see theirs too. X
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Re: Starting chemo May 2014

Thanks ladycroft..I asked for the cool pads when I saw the nurse again today...we have tried creams...too sticky ./..gel with dressings...too itchy and at last relief with the cool pads . Session number 25 tomorrow..my last one and I'm well cooked and very red and sore ..you could fry an egg on it !! Told today that it would get worse before it starts to ease as it continues to work for another two weeks after you finish. That said its still easier than chemo ...Hope everyone is ok xxx
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Re: Starting chemo May 2014

Yippee! Well done Ruth ,have a good rest after this . The radiotherapy is nowhere near as tough. Just the journey (50miles round trip for me ) and the sore patches. If your skin does blister badly and break ask your doctor to prescribe Actform Cool pads they work better than the Polymem that Mount Vernon give you as they are a gel pad not just a sponge and obviously more expensive . My doctor had never heard of them !

My feet are still numb 10 weeks after last taxotere and i need to lose the weight I've put on but my hair is coming back and I had a great time in France last week 

Good wishes to everyone on here it seems we are seeing a bit of light at the end of the tunnel x

 

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Re: Starting chemo May 2014

Hurrah - thinking of you. Let us know when you're done and dusted xxxx
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Re: Starting chemo May 2014

Balloons and banners for you today and well deserved. Hope all goes well ..hugs Linda xxx
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Re: Starting chemo May 2014

GMC - Thank you 🙂 Hi ho hi ho its off to the last Taxol I go !!! xx Ruth xx
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Re: Starting chemo May 2014

Good Morning Ladies

Good to catch up with your latest news.

Will definately be thinking of you on Tuesday Ruth and raising a glass to celebrate the last chemo given to you and the last for all our chemo thread ladies! I always enjoy going to Portsmouth - especially Gun Wharf keys for the harbourside restaurants. I was at Teacher Training College in Portsmouth many of years ago but it's all changed so much!

Sheryl, Hope they manage to squeeze you into an appt with rads so the process can be kicked off asap. How lovely to be going to Malta. I've been a couple of times and would happily go back again.My hus band really enjoyed seeing all the old British cars they still drive in! I loved the old city and windy streets with quaint shops. Fascinating historically too if that interests you  - or maybe you've been there before too?

Linda, I really applaud how upbeat you're sounding when you've still got a fair bit in front of you.How's the treadmill regime working out?  I've been quite down recently as I'd thought all my treatments would be over by Xmas anad could start the New year with a clean slate!

As I know I may still have cancer cells in my breast due to lack of clear margins last op I haven't used the USED to have  cancer option when talking to people. I still say I'm having treatment for breast cancer.

I can't tell you all how bloody fed up I am with this infected wound. I've got no idea how long it will take to improve but may have more of an idea next Wed when I see consultant. The district nurse came out yesterday to dress and pack it and it's quite uncomfy. The hole is about an inch in diameter so could end up with an impressive scar - as if I haven't got enough already!!

No sign of rain so far so hope to have a drive out somewhere, a walk and maybe some lunch out - although tucking into a doughnut right now! Appetite back !!!

Take care girls, Gill X

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Re: Starting chemo May 2014

Hi Sodastream,

 

Blimey what an accolade the longest running chemo babe lol ! 🙂 I guess 6 months is a long time 🙂

 

Its interesting what you say about how to talk to folks about the cancer diagnosis. I must admit once I had the lumpectomy in March, from then on I have always said I HAD cancer but now receiving treatment to ensure it doesn't return 🙂

 

Yes not a big gap between chemo and Radio beginning, but I lost September to cancelled sessions of treatment so it set me back a bit.

 

Inbetween, we are going to Plymouth fir a couple of days, to visit our daughter who is at uni down there, plus hoping to organise my xmas gift shopping, as I want to get it all done incase radio affects my energy levels 🙂 Its been a funny old year all told and I cannot believe 2014 will soon be over, I seem to have been on my own little planet for the bulk of this year ! xx Ruth xx

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Re: Starting chemo May 2014

Linda I'm impressed that you've got a treadmill and are on a mission to get fit. In a way it must be some relief that you're having so many tests at the end of treatment as it will ease your mind and help you move on.
Ruth you deserve a medal. You are officially our longest chemo babe on this thread. You've done so well and I expect it will be a very emotional day for you next week on your last session. They haven't given you long in between chemo and radiotherapy but hopefully you've got something nice planned for the time In between treatments.
Gill I hope that the infection is responding well to the antibiotics. Have you got a date for the operation yet? It must be so disappointing for you to have your treatment delayed. Funny how our treatment changes as we go along. I can remember thinking I'm going to be the last on this thread to finish chemo and treatment wouldn't be over until March next year. However I liken this journey to a game of snakes and ladders and I've certainly gone up a big ladder in my treatment. You've had a little snake to go down but I'm really hoping you find your ladder soon.
I'm hopefully seeing the doctor re radiotherapy next week, when I phoned to chase when appointment was it transcends that nobody had requested one. If they can't fit it in next week then it will have to wait 2 weeks as I'm on holiday the following week in Malta. Was hoping to have radiotherapy finished before Xmas but that might not happen now.
I've been thinking recently that I no longer have cancer as it's now all been cut out. However still going through treatment it seems weird saying to new people that I talk to that I had cancer. How do you all feel about this, do you say you have cancer or you had cancer?
Hope you all have a lovely weekend. X
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Re: Starting chemo May 2014

Hello Ladies,

 

Wax2014 - Yes, last chemo on Tue 28th October.

 

A 2 week break then its driving upto Mount Vernon every weekday for 5 weeks for radio, which will take me upto xmas. Its  a round trip of 40 miles for me each day and it was supposed to begin sooner but I had 3 chemos cancelled in September as I was suffering from too many side effects.

After radio finishes, I then don't see anyone until March, when I have my 1st mammogram and get the results from a follow up appointment with my surgeon.

I hear that only certain products can be used on skin whilst undergoing Radiotherapy and yes I had heard that the skin gets sore and also you can also be very tired, but I have been really tired throughout my 6 months of chemo anyway, so I am used to that 🙂 Good luck with all your future appts.

 

I hope everyone else is doing ok as well xx Ruth xx

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Re: Starting chemo May 2014

Gill..sorry to hear that your op has been cancelled , but better that than new wounds that won't heal properly. What surgery were you having and is it reconstruction as well?
Ruth ...great news that your chemo is finally coming to the end..its been a long , hard run so far for you..bet you cant wait !! Will you get much of a break before starting radio, did you mention yours was for five weeks as well?
I've got three left after today and am now sore and really red but I get to see the nurse each day after treatment to check my skin and give me creams and advice so that helps.
I also have a list of appointments when I finish lining up....bone scan, mri, surgeon and oncologist in that order through Nov.. and I thought it was coming to an end but it seems a new chapter begins .. Linda xx
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Re: Starting chemo May 2014

Hi GMC - So sorry to hear of your portacath being removed causing you problems. Interestingly, when I had mine put in back in April, the scar just wouldn't heal at all for a long time, even now its one of three scars due to cancer and its the smallest but most obvious one.

They want to take mine out when I finish my chemo next week , but I am going to ask the oncologist when I see him next week if it can be delayed until next March and just have it flushed every 6 weeks until then. Then SHOULD my mammogram result not be good I won't have to go through another insertion.

 

I hope everyone else is doing ok, the cehmo nurses said they will put bunting and balloons out to celebrate me finishing my chemo next week, as I have been going since April, with a months sabbatical when I hit the wall. I asked was it because they are getting rid of me or to celebrate finishing with me but they just laughed :)) xxRuth xx

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Re: Starting chemo May 2014

Hi Ladies

 

Like you Linda I am going through a bit of a wobbly time!

I was due to have surgery today but the surgeon has decided to postpone it. I had my Portocath (central line) removed last Monday and last night the stitches burst and it became inflamed and painful! Ian and I went in to Frimley Park to see if the surgery could still go ahead as scheduled but the consultant took one look and said because it is infected it was too much of a risk of cross infection. I am now on some strong anti-biotics, have had the stitches removed and the wound packed out. District nurse will come out every couple of days to re-do it and hopefully in a couple of weeks it will have cleared up! I was very disappointed to have the op delayed but can understand the reasons and will just have to go with the flow. Seems the chemo continues to compromise the immune system.
Onwards and upwards I guess - but it feels like one step forward, another step back!!!!
Best wishes, Gill
 
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Re: Starting chemo May 2014

Morning Ladies, how are you all doing? I'm a bit up and down lately..between trying to get on with it and the worry wobble . I have an appointment for 6 Nov for MRI but still waiting for bone scan to come through ! I have 8 more rads left and am on the home stretch which is good, a little red and sore but nothing much so keeping my fingers crossed for this week..
On a positive point I now have a treadmill !! I decided to kick myself into thinking getting BC was a wake up call and it was time to get myself fit and eat more healthily although the thought of a cold garage this morning seems a bit daunting but on a plus after all the hot flushes last night may be a godsend 🙂 .
We finished decorating the spare room at the weekend and I'm really pleased with it, time to finish the hall and stairs now, its over a year ago since we moved in and so much has happened in that time and put everything on hold so nows the time to start again and get it all done before we go away at christmas .....and after this year I can't wait !!
I'm also on a megga e bay week , loads to sell and hopefully make some money for the dwindling savings now I'm not working.
Anyway enough of my waffle the treadmill awaits !! Hope you are all doing OK ..lots of hugs and Love ..Linda xxx
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Re: Starting chemo May 2014

Hi Ladies,

Successful day, despite the NHS strike, as had pre op tests and the portocath removed. Happily that was a painfree process although a little sore now the anaesthetic has worn off.

Ruth - cording is when a tendon in the arm heals following lymph node removal, but it heals badly and forms a cord along the lenth of the arm. This either improves in time or can be cut surgically. All the best for your chemo tomorrow- nearly there !

Sheryl - I'm having more margins cleared (about a third of the breast removed) and a reshapeing of that breast to make a better match with the other smaller one! The surgeon has warned me that as he'll be repositioning the nipple there is a chance that it might not "take". Time will tell. It does sound like we may very well be at St Lukes together for radiotherapy but if that doesn't work out we can always meet up for a coffee when it is convenient to us both. Hope you find somewhere lovely to book for a break and try not to worry too much about the Tamoxifen. I was on it for 5 years and had no problems whatsoever. I really wish I had been kept on it for longer as feel it may have kept this cancer in the other breast away.

Thinking of you Linda and hope to hear from you soon. It's so good to be able to let of steam on the forum without worrying about being negative as we have all had periods of feeling down and sad.

Very best wishes too to all you other ladies on this thread.

Hope everyone is progressing as well as possible,

 Gill

 

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Re: Starting chemo May 2014

Hello Ladies,

 

I am not sure what 'cording' is? Fingers crossed for all those about to have surgery or awaiting test results. Sodastream you are so right, when I was waiting for the results of my CT scan its such a scary uncertain time and it felt like a weight being lifted when they told me no signs of cancer at the moment.

 

I have Taxol number 10 tomorrow, after that it will be 2 more to go. My feet are a bit numb again but I am going to keep quiet this time as I don't want any more delays in my treatment. Going to chemo sessions hasn't been particularly onerous, but I imagine 5 weeks of travelling to Mount Vernon each weekday will be quite trying, with the weather/traffic, then trying to park there each day.

 

Keep your peckers up ladies you are all doing so well 🙂  xx Ruth xx

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Re: Starting chemo May 2014

Linda really sorry to hear you're having to have more tests. We've all been there and when people say don't worry you look at them as if they're mad because you have every right to worry until those results come through. Then when they come through and everything is ok it's like they've told you you've just won the lottery so I'm keeping everything crossed for you that you get your lottery win very soon. I had cording in my chemo arm with the first dose being the worst and I can reassure you that 5 months later it is back to normal however I can still feel it and it hurts if I press on it but in everyday life I have no problem with it. Have you tried sleeping with your arm elevated on a pillow to see if that helps. I've been really lucky that chemo hasn't left me with any lingering side effects other than a painful hip which like you said makes you feel like an old woman. I'm really stubborn minded and won't let it beat me so have been going on lots of long walks but then find I'm limping even more the next day.
Gill I'm so pleased that the weather has been good for you and cream teas and G&T sound divine, I'm drooling at the thought!! Are you having a mastectomy and have they got to take any nodes or did they already take them? We may end up having some of our radiotherapy done at the same time as I've been told I'll start mine in about 6 weeks time so we'll have to co-ordinate times so we can go to lunch afterwards.
I had to go and have my mastectomy site drained on Thursday but they only got 55mls out, I thought it was more but now realise I have a protruding rib that made it look bigger than it was. I also saw the surgeon as he had all my results in and the nodes were all negative. I have got Metaplastic BC which just means I have to be vigilant as it has a tendacy to come back but being such an aggressive cancer if it does it will be quick and big so they'll be no mistaking it. My hormone receptive levels have dropped too so I'm borderline triple negative. They've said they'll put me on tamoxifen as they want to throw everything at this but if i get horrendous side effects I can stop as they're not sure if it will be effective and certainly not worth putting up with unwanted side effects.
Now I have a break in treatment I'm going to try and get away for a few days so am busy looking at where to go however with my past history may hold off actually booking until a couple of days before we go.
Hope you all have a wonderful weekend. I'm making the mst of not being able to drive so can be chauffeured to the restaurant tonight and enjoy a glass of wine or two. X
Member

Re: Starting chemo May 2014

Hi Linda, sorry to hear your new problems. As if you haven't had enough to go through! I really hope they fast track your tests so you have as little time to worry about things as possible. We'll all be keeping everything crossed for positive results. I, too, have developed cording but doesn't sound as severe as yours although the BC nurse said when I have my op in just over a weeks time the surgeon can cut the cord that is a problem. Not sure about that though as can cope with it at the mo and I don't want to add to the healing time before rads.

Apologies to everyone as I have posted here recently but it seems to have disappeared into the ether!!! Hope you are all doing OK. Having a few days in Sidmouth, Devon and luckily the weather is great. Can't do too much walking as feet still very sore and legs a bit weak - but I can manage the cream teas - not to mention the G & T's now my taste buds are better!!!!

Take care everyone, Gill X

Member

Re: Starting chemo May 2014

Morning Ladies....i'll be staying in this group as the support from you all is priceless..I've been to see the oncologist as I am experiencing really bad pain and swelling in my chemo arm.She confirmed I have cording which may get better in time , but my arm has looked like something from a horror movie since chemo finished two months ago and my hand is permanently swollen now aswell..she also checked my lymph nodes in my right armpit and found them to be enlarged ...now have to have MRI to see whats going on..and of course my mind has gone into overdrive.
I also have bone/joint pain which is not just making me feel like an old woman but almost a cripple !! Just getting up off the sofa requires effort and is extremely painful, as is simply turning over in bed so I'm having a bone scan . I know there could be all sorts of reasons for these symptoms but when the oncologist said try not to worry..it didn't help xx
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Re: Starting chemo May 2014

wax2014 sorry to hear that stay here with us ! I don't know whether I will move to radiotherapy when the time comes or whether it will complicate things with these groups on here? xxruthxx
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Re: Starting chemo May 2014

Linda please don't keep it all in as we're hear to listen in the up and down times. Hope you're ok. Sheryl x
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Re: Starting chemo May 2014

Ruth..I'm still here .although I'm on radiotherapy now..just having few issues and new investigations so feeling sorry for myself..thought it better if I stayed away ...as I'm a bit 'doom and gloom' at the mo xxxx
Member

Re: Starting chemo May 2014

Dreading chemo next week as felt absolutely rubbish after last session decided against continuing with cold cap as I fainted day before chemo.went for wig fitting yesterday,hair definitely thinning but as yet ok.onwards and upwards x
Member

Re: Starting chemo May 2014

Ruth so glad chemo went ok despite the cold cap. If you google look good feel better you'll find their website and you can input your postcode to find your nearest location. I wasn't given any information on it but looked into after hearing others on this forum saying how good the freebies were (over £200 worth).
I haven't started radiotherapy yet but even if I do join a thread I'll still be on this one as I love the friendship we've all built up and am quite aware that we're at different stages but want to be here to support those that are trailing in their treatment. As I've said before I found it really difficult at the prospect of having more chemo than most and thinking I was going to be one of the last to finish and everyone else moving on. So I'm here to listen and support you and please feel free to moan away as it must be tough.
You'll be pleased to hear I've managed to stick to my diet, the pressure of not losing weight and having to post the results on my Facebook group it a great incentive to keep on track.
Member

Re: Starting chemo May 2014

Hello Ladies,

 

Chemo went ok for me yesterday, although in my brain addled state when it was time to switch the cold cap machine off, I couldnt find any of the nurses, so I forgot to switch it off to allow time for the ice on my head to melt and levered it off with difficulty whoops ! I usually find side effects tend to hit me at the weekend.

 

Sodastream - I keep hearing about these feel good courses re applying make up etc and to date I havent been given any info about them? Whether it is because I am currently at a private health hospital I don't know, but my 5 weeks of radio will be at an NHS hospital so perhaps I will find out more then.

 

Pixie - I had 10 out of 11 lymph nodes affected by caner cells so that is why they ar ehitting me hard I am told. A recent CT scan showed no cancer but did show a fatty liver as I have said earlier to the other ladies. I had to laugh when I went to my GP and he said diet as I have lost 2 and a half stone since beginning chemo ! I am dieting without having to try these days 🙂

 

Those of you who have finished chemo and now on Radiotherapy have you moved onto the Radiotherapy group on here or have you stayed where we are? Just wondering 🙂

 

I hope everyone is doing ok xx Ruth xx

Member

Re: Starting chemo May 2014

Ruth hope everything went ok at chemo for you today. Just think only 3 more to go, we need to do a count down for you.
I went on the look good feel better course today at my hospital. I really enjoyed it and picked up lots of good tips for applying makeup rather than just a quick slap on that usually happens. The freebie goodies were amazing too and I can't believe how many I got.
I have the hairdresser coming tomorrow to cut my hair really short. The cold cap has been brilliant and I've managed to keep my hair but since stopping chemo in the last few weeks it's got thinner and thinner and just looks awful so the time has come to start wearing the wig when I go out.
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Re: Starting chemo May 2014

PS really sympathise about the food situation, Ruth, it's hard enough to go through all this without having to change what you feel like eating. Maybe adding in some extra greens on the side of what you want to eat is the way to go. I have seeds in the cupboard to sprinkle on things but do forget to add them half the time!
Member

Re: Starting chemo May 2014

Hi Ruth

I am having 12 weeks of taxol as well. Had number 6 today, halfway phew! The breaks are really helpful to give bloods a chance to recover and good to have a chemo freeweek. Having an extra blood test next week as my Hb levels have been hit hard. Like you I had a relatively small tumour and several nodes involved, 6/13 for me. From these forums I can see it is not so unusual and also saw several comments that it is a sign our lymph glands are doing their job!! 🙂 My BC nurse said the taxol will likely all hit me hard at the end but good to know I may hit a wall after the week 9 and to be prepared for that. Hope you were ok today. How are you finding the cold cap? I had a hot flush mid chemo today and was for once glad to be wearing it!! I've lost about half my hair and v thin on top but still looks ok, fringe back and sides under a hat.

Hope the rest of you May ladies are doing well. I started at very end of May so joined the June group. Most of them are finishing chemo around now too.

Px