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May 2017 chemo starters

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Re: May 2017 chemo starters

Oh Shi - I love the bap zap name - I hadn't thought of that one !! x
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Re: May 2017 chemo starters

Yes I've got something "normal" and that's my blood pressure at last.... well, until next Thursday when I'm due the next Herceptin injection!!

 

Treehouse - I've definitely come to the conclusion that I was never "normal" - thank goodness! x

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Re: May 2017 chemo starters

Bap zap 😂😂😂😂😂
Pml
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Hi treehouse, one more bap zap 😎😎🥓🥓🥓tomorrow 💃🏻💃🏻🕺🕺💃🏻💃🏻Then onto club Tropicana 🏖🏖🏖treehouse you are our bionic woman 💪💪💪and as for the ‘normal’ if none of us are s bit 🤪🤪🤪🤪after this journey then you’d be a robot 🤖🤖🤖 celebrate every little achievement that’s what I’ve been doing and I have not had all you’ve dealt with bionic woman you are so 💪💪💪💪treehouse. 💕💕✨✨shi xx
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Re: May 2017 chemo starters

Hi Shi
Thanks for sharing 👍 hope you are doing ok.
Hi all doing ok but lots of little things niggle and I wait to see if they pass or accumulate before I see the gp again. Will I ever be normal? ( maybe I never was 😂)

😘
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Re: May 2017 chemo starters

Hi May thread, Rosie h has posted the most beautiful post on jan chemo dtarters, please read if you get chance 💕💕✨✨shi xx
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Re: May 2017 chemo starters

So my eye test yesterday came back that my distance vision hasn’t changed but my near sighted vision has changed only slightly by 0.5. So as it does make a difference I’ve new glasses on order 🤓

Had my post 8 week op exercise class which was good. A whole hour doing a lot of resistance excercises with bands. It’s given me the confidence now to not be too protective of my tummy.

My biggest problem at the minute is hot flushes and sweating 😓 they are happening more frequently and lasting longer and I feel hotter!! 😡 It’s really getting to me now and impacting on my day but also my sleep. I’m going to see my GP because I can’t face having this day in and out indefinitely ... good old Tamoxifen 😒
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Re: May 2017 chemo starters

Trisha, sorry to hear your all achy lovey. It’s worth popping along to your GP and chatting about your symptoms. You talk about getting tired really quickly. I know when I’d had my op it was hard going to get moving again, I think me thinking too much about my past year also tired me out mentally, so physically I couldn’t be bothered to get up and get out. Our mood can affect us in all areas. So I wanted to break the cycle and I boosted my water, veg and fruit intake and made my self break that 10 minutes of exercise to 15, then 20. The more I did the better I felt. I found biscuits, cakes bread etc made me really sluggish so stopped eating them. The pains could be side effect of medication. If you see your GP they can put your mind at rest. Lovely to see you on here xx
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Re: May 2017 chemo starters

Hi Trisha, lovely to hear from you.  I thought you had finished your rads? Are you having a second helping?  I get stiffness, aches and pains from treatment, Tamoxifen and surgery but feel generally well.  You should speak to your GP if you are struggling that much and see if they can run some blood tests.  Glad your hair is going well, at least! Xx

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Re: May 2017 chemo starters

Thanks Jay found it x
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Re: May 2017 chemo starters

Trisha - if you go back to Going Through Treatment board - and look down to Targeted therapies discussion group - and it's the one at the top - I've commented there this morning! Go down to Yorkies comments - very inspirational and hopeful!
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Re: May 2017 chemo starters

I know Treehouse, mine's the same! Always replies with "that's down to chemo"! However, if you read other ladies on Herceptin experiences they would see it doesn't appear true!

I almost want to ask the onc the following question: "So when did you, yourself experience Herceptin?" - I liken it to having a baby and a text book!!!! - say no more!! x
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Re: May 2017 chemo starters

Hi Jay. Am looking for link rw Herceptin. Cant find it?? x
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Re: May 2017 chemo starters

Jay my onc on Friday said herceptin does not cause aches. Grr
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Re: May 2017 chemo starters

Thanks Mai for sharing your blog - it is a wonderful thing to do - I remember in the early days of being diagnosed and then facing chemo - how I plugged into Victoria Derbyshire's blog and found it so helpful and when I went to chemo - I really wasn't scarred as I'd seen what to expect.  It's hard to look back on the chemo days - I was reading last year's diary this morning and I almost can't remember until I read that how bad my mouth felt - how I simply couldn't drink water let alone eat!  

 

Hi Trisha - glad to hear you're still very much a part of us still - I really recommend all Herceptin ladies on here to take a little peak at the Targetted Therapies section of the board and in particular Herceptin Side Effects discussion (it's currently the one at the top) - find Yorkie's comments - she's a lady whose now 8+ weeks on from final herceptin injection - her words are truly inspirational and full of hope - well worth a read and may explain some of the reasons why we feel so rubbish at the moment.  

 

So it's onwards and upwards this week - no medical appointments due and just an achey body and a bunged up nose to carry around!!  (I've also seen herceptin can be to blame for the nose thing too - I'm still not complaining though - it has far more benefits than negatives!) x

 

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Re: May 2017 chemo starters

Trisha, I don't know if this is anything to do with your aches and I dont know the reason you take gabapentin, so this might be irrelevent. I have taken Pregabalin for years, for a chronic neuropathic pain as a result of nerves being pulled from my spine in an accident in 1979. I did try Gabapentin, but really didn't like the side effects. Pregabalin is considered to be a much better solution with fewer side effects. It used to be very expensive and doctors were reluctant to prescribe, but I think it's now much cheaper now.
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Re: May 2017 chemo starters

Hi Trish big hugs. It’s good to hear from you but sorry to hear you feel so 💩. Have you spoken to your GP?
Mine did loads of tests for PE, anemia, thyroid etc. Our bodies have had a battering but there may be other issues that can be easily fixed.
Don’t just assume this is the new you.
Much love 💕 x
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Re: May 2017 chemo starters

Mai... Have read about Lola. Felt almost as tho u were talking about me. I have been told they have the cancer but still had to have 18 rads just to be sure.... Still very tired and dont feel 'cured ' havent had anything official to say am fixed?? Am scared to go back to work. I cant stand or walk for more than 10 mins. Am I just being lazy? My hair looking amazing. Curly and about 2 1/2 inches all over and people say how well I look. .. I dont feel well on the inside tho xxx
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Re: May 2017 chemo starters

Thanks Mishy and Treehouse, I really enjoyed writing the blog and it's nice to help others who are starting this horrid journey.  You have all contributed to the knowledge base which I built up so I think there is a bit of us all in there somehow. I feel like I'm coming out some very deep thoughts now after the inertia of treatment finishing.  I can't change the future but I can change my thoughts. Xx

My son popped home this weekend so I've enjoyed spending time with him.  Been out for a lovely canal walk this afternoon. 

Here's the blog I've created so here it is for  anyone who would like to have a read: https://lifeafterlola.blogspot.co.uk/

love to all. Xx

 

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Re: May 2017 chemo starters

Hi ladies. Hope all are doing well. Not been on for a while but am ok. Suffering with achy everything! Feel like the Tin Man in Wizard of Oz! Am on Anastrazole. I take Vitamin B12, Thiamine, Folic Acid, Naproxen and Gabapentin. Any tips? x
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Thanks Mai you really sound like you have stepped out of the tunnel and into the light. I hope that was a positive experience writing it all for others to benefit.

Don’t be a stranger. Miss your energy and sense of humour x
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Re: May 2017 chemo starters

Mai your blog is brilliant straight from the heart thank you for sharing it 😊
Ladies you need to read it its posted on October thread x
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Re: May 2017 chemo starters

Jay i was never told about it either i too had axilla rads as well as some lymphs removed so was pleased when the lady gave the talk on it there is lots of info online too haven't got a sleeve either
Yes maybe she had a bad experience of a forum (not this one!) and ther is nothing wrong with not using them bur but sometimes it would be better to keep things to yourself!!!! I never said i use the forum after the comment just left it as i didn't want to make her feel bad for saying something, i signed up to help me move forward so will continue to go i just need to not compare myself to others, i hope the other lady comes again who was feeling a bit rubbish i wanted to tell her thst sometimes people will act like they feel better than they do as a kind of coping thing we are all virtually strangers at the end of the day
Treehouse i enjoyed sofa shopping but it did take ages to pick one!!!
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Re: May 2017 chemo starters

Mishy - I was only thinking this morning, bearing in mind I had my op last Sept - I've not really been given any info on lymphodema - I feel, especially as I've had all lymphs removed under my right arm coupled with rads - I should have been given some instruction on massage on assisting lymph drainage. I'm surprised I haven't been offered a sleeve - maybe that's going to be discussed with me at my 6 month post op appointment with the surgeon at the end of the month - we'll see!

Obviously the lady who made the comment on forums is entitled to her view - however, personally I have found the forum invaluable - I have been extremely fortunate to have the most amazing support of my hubby, family and friends but the ladies from May 2016 kept me sane! We were all going through the same treatments and only us were able to truly know how each other were feeling and offer invaluable advice and support. The reassurance that I wasn't truly going mad was immeasurable. I would recommend anyone going through this whole thing to join a forum like ours. So don't feel wimpy that you too used one - as you say it's not all cancer talk - but the laughs and good times are also extremely important. x

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Re: May 2017 chemo starters

Hi Wolfee - it's definitely Mai who takes CBD oil - I'm sure she said she puts 2/3 drops under her tongue - but I don't recall where she gets it from - hopefully she'll be on here soon to direct you!  

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Re: May 2017 chemo starters

Hi Ladies, hope you are all doing well.

WolfEE, sending hugs as you hit your anniversary. My diagnosis was on 20th March so it's looming.  The daffodils are starting to bloom and I am very happy to see them again.

Treehouse, take it steady and I hope your recovery continues to go well.  Do they comment on whether they expect your heart rate to slow down eventually?

Mishy, sod superwomen who don't need forums.  I think they're great. They enable us not feel alone at any time, day or night and we don't have to bore "normal" folk with our BC talk, because people expect the cancer story is over and we can move on, but in reality there are still a lot of issues and anxieties we need to talk about. This is a safe space to do so.  I also like to think it's useful for health professionals or researchers to peep at if they want to know what we go through and how we manage it. 

 

CBD oil. Yes I am using daily since I finished radiotherapy.  As it is not conclusively medically proven there is no recommended dose so we are our own test.  I buy from canabidol.com and their 500mg is about £40 which should last me about 2 months. They deliver next day. I just put 2-3 drops under my tongue twice a day. It's als good for anxiety. 

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Re: May 2017 chemo starters

We are lucky our group is wonderful and supportive. I know I don’t come on and comment so much these days but during my chemo I can honestly say I wouldn’t have managed without you all. And I’m always about reading just knowing your there is the biggest comfort. And yes we vent our fears and anger but there is always some humour and laughter lightening the mood and omg so much support.
Your all gems and count me in I’ll be pelting balls in the background also when you next have to listen to some negative crap. If they don’t like it they don’t hav 2 participate but their loss really!! Xxx
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Re: May 2017 chemo starters

Wolfee, I think the HandB 5% is new so the reviews prob don’t relate to that.

Mishy, my sil, with myeloma had the same view of forums. But I think your May thread and my Oct thread are particularly strong on the support and laughter side. I did make a hasty retreat from the bone mets thread though. 🤗❤

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Re: May 2017 chemo starters

Treehouse I’m right side you ball pelting and mishy, I am surprised you didn’t give them one of your famous 🖕. There is so much ❤️ Support, sharing, comforting, encouraging, laughs and everything in between that we have shared how would the walking gobs at your maggies know mishy, they’ve not had our journeys or our amazing friendships. Like treehouse says just smile and remember you have us 👭👭💕💕✨✨shi xx
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Re: May 2017 chemo starters

Oh and love the sofa 🛋 shopping. I want to do our living room eventually but still in bathroom🚽 chaos so will need to be patient for another year or so ☹️
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Re: May 2017 chemo starters

Hi Mishy. Thanks for sharing. Firstly you too are super woman!!!! So don’t put yourself down. Secondly we all have strong days and 💩 days so don’t feel too bad that you didn’t match those strong characters on that one day. Thirdly BALLS ⚽️ 🎱 🎾 to anyone who says anything negative about forum users. It may not be for them but my god it has been a light for me in my darkest hours and being able to be ‘ doom and gloom ‘ in a safe and supportive place now and again is a huge thing. We all get it and nudge, drag, kick and hug each other along this utterly **bleep** and potentially lonely journey.
Next time anyone says anything negative about forums just smile to yourself and think of me pelting balls at them.x x
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Re: May 2017 chemo starters

I too am interested in CBD oil but like you all don't know enough about it im sure Mai was looking into it too
Im seeing my onc for post 3 month check (can't believe its 3 months already) and picking his brains about it!!!
The afternoon thing run by the BC nurses was OK the most useful part for me was the talk on lympodema which tbh hadn't been explained in that much detail the rest was ok but stuff i already was aware of although im not ungrateful as at least it was offered, the where now at Maggies is quite good too although there are some strong characters there who are all nice but also find it hard to admit to feeling 💩 alot because they all are like superwoman 😨 which another lady said she felt like a failure as she also felt a bit like i do so it reinforced some negative feelings
Will still go along as there are some things I want to get from it i will just see how i get on, one thing i didn't like was one of the ladies said oh the bloody forums are doom and gloom and she couldn't be doing wuth all that rubbish so it kind if made me feel a bit wimpy because I have needed to use one
I personally have found alot of comfort in the forum especially when everyone gers bored of BC talk i suppose its to them like baby talk but when you are having treatment etc you need to share with someone how you feel don't you!!!!
Been sofa shopping today finally made my mind up got a lovely free clock too!!! There was a good deal on got the equivalent of my footstool free with the discount today decided to get a sofa and arm chair rather than my 3 seat and 2 seat sofas gets delivered in june so oh has plenty of time to get room decorated 😊
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Buddyfan, keep me updated and I’ll keep you updated. It’s mind boggling but I have a gut feeling it is good. ?????
I’ve been reading the reviews on H&B and I really don’t think its strong enough it maybe good as a feel to know how you may react and get in the habit of taking but realistically moving on I think it would need 2 be stronger for any real benefit ??
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Re: May 2017 chemo starters

Wolfee, like you I've been looking at CBD oil and have spent hours looking. H&B have an offer on atm but it's only 5% strength so I don't know if it's effective. As far as I can tell, the THC part can kill cancer, wereas the CBD bit can help stop spread. In UK, the legal stuff is low THC. There's also a question mark whether THC can cause an increase in ER+ cancer. I've sent all my links to OH to research as I need different eyes to look. I want it to work so I may be only seeing what I want to see. I can't find out how much we need to take to hopefully get a benefit.
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Re: May 2017 chemo starters

Morning all.
So have any of you considered or taken CBD oil? I absolutely know nothing about it but a friend suggested I look it up so I have soent hours in bed reading and now want this oil. What are your opinions?
It’s confusing because it comes in different strengths and consiquently differen price obviously the higher the strength the more expensive the oil. Also how much do you take? If a £50 bottle would last 2-3 months great but if that only lasts 7-10 days then I wouldn’t bother because I woukd like this to be part of my long term routine. ???????
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Re: May 2017 chemo starters

Anniversaries are strange atthistime. As you say bad memories but such a relief they found it when they did.
Have you made the call yet? My right implant is giving me issues after yesterday’s exercise class. I will see if it settles over the weekend and call next week if it still hurts.
Gentle kick up the bum Wolfee!!! 👢

Oh my word you were early babies 👶 👶
Were you prem in special care?
X x x x x x
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Re: May 2017 chemo starters

Morning all. March 9th = mine and my sisters official due date of my mum hasn’t had us so early!! And one year exactly that I was heading off for my yearly mri screening!! My 1st one infact becaue they had ‘lost me in the system’
Didn’t know at this point I’d be getting a letter in a few days inviting me back for second stage testing!! And then it all began.
Gosh a year (how things can change inside one year) but thank god for this day if lest any longer then it could have been worse. Xxxxxx
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Re: May 2017 chemo starters

I get 8 weeks. If they think I am up to it I may get moved to the younger group who go twice a week at the uni rather than the hospital. I think they might use exercise bikes etc.

I am an anomaly being cancer/cardio. So they want to keep an eye on me.

You are proper stomping woman I can’t keep up with you on the Fitbit.!!!!
You deserve to have lost a stone by now 👍🚶‍♀️🏃🏻‍♀️💪🏻
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Re: May 2017 chemo starters

Hi Treehouse, Gosh that sounds like a proper workout!! Do they recommend doing something similar at home or do you just go back there again and do the same again for a few weeks? 

Im desperate to lose a bit of ‘excess’ and I’ve lost 5lb with this walking lark!  At this rate there won’t be an inch of the city or surrounding area that I won’t have walked 😂 ... must avoid the roads with lovely bakeries though 🤤

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Re: May 2017 chemo starters

Hi all, sorry not been on here for a while. Some of you are on Facebook and some aren't, so sorry for the duplicate post today.

 

Had 1st annual checkup today My appmt was supposed to be just to see Breast Consultant but I asked if they could do mammo too as it was booked for 2 weeks time. They did the mono mammo (!) which didnt seem to hurt so much this time, maybe my pain threshold is higher. Had to wait to see Consultant, his registrar examined mono boob and then my scar from Mx and also all lymph nodes on chest, neck and under chin and around my neck at the back (had to shrug my shoulders for this one). Not a chatty Consultant, asked me if I had any concerns and then said see you next year. Results from mammo back in 2 weeks via post.

 

During treatment time was so slow but now over 1 year from diagnosis time seems to be moving much faster. 

 

Love to all

 

Heather 

 

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Re: May 2017 chemo starters

Hi Andi. Nurse seems fine so I am not too worried. I take my tablets every other day so maybe I will make sure I take it on rehab day in future. It was a warm up ( marching, knee lifts squats) then 12 x 1 min stations some with weights ( mine were smallest 0.5kg) then pulse. Then do it again. Then cool down and pulse. I could feel it in chest, legs and arms. Did not push my shoulders but it felt positive.

If I’m honest I am doing more physical activity now than pre cancer ( too busy working) so I just need to find a way to keep it up.
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Re: May 2017 chemo starters

Treehouse, my resting heart rate is about 90. I first realised it was highish, years ago, at a gym. I noticed people working way harder than me had much lower heart rates. I had loads of checks and all ok, just considered on the higher end of normal.
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Re: May 2017 chemo starters

I have finally got my eye test booked for next Monday!! I know I’ll need new lenses, can really notice a difference that chemo has left me with.  Hey ho .... maybe upgrade to new frames too 🤓

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Re: May 2017 chemo starters

Hi Treehouse,  quite a mix of ages then at cardiac rehab session.  How did you feel about the session, have you found it helpful? Did they say anything about your resting heart rate and how it can be reduced or are they happy with it?

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Re: May 2017 chemo starters

WolfEE - Have you made the call?  If not, please call them 😘 Don’t have any more sleepless nights worrying, and certainly don’t worry about having to speak to the breast care staff.  They get paid to do a job, and answering your call is part of that, and taking care of you is part of that.  If you’ve called them already, then apologies for the waffle!! 😁 But if you haven’t .... you’ll have Treehouse and myself nagging you! 😉 x

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Re: May 2017 chemo starters

Cardiac rehab number 1.
Can’t really explain the experience. About 10 people 3 women . Ages from 40 to 80.
A fitness instructor and 2 nurses. As we leave they take our resting pulse. Everyone was in the 60s. Me =92!!!
Ho hum I think this is the new me.
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I will let you ladies know what it entailed maybe your bc nurses might know about similar things running in your area x
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Re: May 2017 chemo starters

Mishy18 that afternoon sounds great
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Re: May 2017 chemo starters

Treehouse i hope that improves for you soon i feel all achey too, i think our poor bodies are a bit buggered!!!
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Re: May 2017 chemo starters

I think Mai article re different areas giving different treatments etc which is so wrong isn't it i know my experiences have been quite different to alot of ladies on this forum as to support app waiting times diagnostic tests etc it does all go back to funding doesn't it, which is bang out of order we should all receive the same standard of treatments and after care at the end of the day i think this event is funded by the Bobby Robson foundation which again is a shame that all my moving forward after care services have been supplied by these types of organisations of course im truly grateful but its still a shame these services are not always available across the UK and rolled out as part of cancer treatment by trusts. I will def be signing the petition Mai put on here.