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May 2017 chemo starters

Community Champion

Re: May 2017 chemo starters

Tree house, literally shaking with laughing from behind my computer! I didn't spot the hidden apples 🍏🍎 🀣🀣
Shi, groove on down at the club Tropicana where fun and sunshine await and maybe a Bristol stool celebratory cake! πŸ˜‚πŸ˜‚πŸ’©
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Zap bap a loo la a zap bam boo 😎😎😎πŸ₯“πŸ₯“πŸ₯“thanks mai πŸ˜˜πŸ˜˜πŸ˜˜πŸ›ŽπŸ›ŽπŸ›Ždone. And to keep the jan girls spirits up I introduced them to the Bristol stool cakes pictures 😁😁😁they need a 😁😁😁as aliand πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰having a big πŸ’©πŸ’©πŸ’©we remember it well don’t we. Jay glad to hear you are ok 😘😘mai speaking of perfumes I hope no one ever buys me alien, we’ve had enough of that thanks πŸ€ͺπŸ€ͺπŸ€ͺclub Tropicana awaits πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸΈπŸ₯‚πŸ·πŸΉπŸ₯‚πŸΈπŸΈπŸΈπŸ·πŸΉπŸ₯‚πŸΈπŸ–πŸ–πŸ–thank you all for everything on this journey, I love you all and thank you for making me πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£so much. I still remember the Greg Wallace comment πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚so, si πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Gotta love auto correct.
Mai apples 🍎 to you too πŸ˜‚πŸ˜‚πŸ˜‚
Community Champion

Re: May 2017 chemo starters

Jay, Nine scan = bone scan (bcc has the weirdest auto correct "features

Tree house, this = think
Community Champion

Re: May 2017 chemo starters

Jay, yes I get intermittent pains in my ribs but as I've had a nine scan I know it isn't bone metastases. That would be my paranoid assumption.
Tree house, I don't this the 2 week rule apples to you as concerns about the heart can't wait 2 weeks. You're allowed to keep using the paranoia fragrance for a bit longer!
Mishy, I think the fragrance needs adding to my blog now! Seems wrong to not share a good perfume!
If anyone wants me to set a blog up for them I'll happily do that and write it for you. Just private message me. Xx
Member

Re: May 2017 chemo starters

Hi Jay glad the ticker is behaving x
I too get rib pains randomly but never know what to blame it on. Ibuprofen helps and it goes in 3-4 days. ( never quite mAkes the 1 week rule)
Community Champion

Re: May 2017 chemo starters

I agree Treehouse - I wish there was an easier way to go back to a certain date/month on here.
Community Champion

Re: May 2017 chemo starters

Hi Mai, yes I was rather pleased too!  I'm not sure whether the blood pressure increases immediately - it does peak during the first week - then starts to subside towards the end of the second week.  It's never (thankfully) dangerously high - but that could be due to the ramparil balancing it out.  So at least the medication appears to be working - of course, it gives me minor side effects - a dry cough and nasal congestion but hey it improves the heart failure I've developed through Herceptin so I'm not complaining.... just 5 more injections to go and counting...... (although if I'm honest - I'm scared they're coming to an end.....).

 

By the way Mai, out of interest, do you ever suffer from intermittent rib discomfort on your MX/rads side?

 

 

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Re: May 2017 chemo starters

I wanted to go back to November and read some posts from there( a lot of support really helped) but I got bored try to go back one page at a time. My god we post loads πŸ˜‹
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Re: May 2017 chemo starters

Treehouse πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ yes they certainly get their money worth from me too!!! They know who I am just by voice recognition now when i ring some people leave things till its too late bless them well not me and yeah didn't think about the posting on here is almost like a diary as such i wonder if ee ciuld retrieve all our posts from beginning wouldn't that be an interesting read!!!! I just love how Mai has been able to put into words in way that will help others πŸ’–
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Re: May 2017 chemo starters

Mishy I thought the same then realised I did write it all down. HERE.
( and I am crap at writing ✍️) 😘
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Re: May 2017 chemo starters

Agreed if we hadn’t gone in the first time (and the second time) god only knows where we would be now.
My GP takes me very seriously.
Can’t ever accuse me of being a time waster πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
Member

Re: May 2017 chemo starters

Mai i love your blog so true and from the heart i bet most people resonated with everything you said i had thought about writing everything down somewhere then putt away like a letter to myself or something πŸ€”
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Re: May 2017 chemo starters

I was given a one to two week rule by onc just have to call his sec with any concerns Mai Treehouse house the way i look at this is that being vigilant in the first place got me to GP so i will probably always get things checked out if in doubt i don't want to be a hypochondriac but neither do i want to get too complacent either i suppose a fine line and all that but as you say Treehouse its easier said than done isn't it
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Re: May 2017 chemo starters

I like the 2 week GP rule Mai. Mine is one week or a temperature πŸ€’. ( or if my mum nags me).
Had a red boob last night on the same side as my chest pains ( mind goes crazy , infection, cyst, damaged implant, ?????)
Redness gone today. Pain no worse maybe improving. Will wait til Monday.

I try being normal then regret it the next day. 😬😀
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Re: May 2017 chemo starters

I have Mai and it is so true!!!! Love the fragrance analogy made me laugh πŸ˜‚πŸ˜‚ its really the truth isn't it " Paranoia utterly seductive with delicate hints of over reacting πŸ˜‚πŸ˜‚πŸ˜‚
Community Champion

Re: May 2017 chemo starters

Mishy, I agree with you. When your own body has tried to kill you from the inside there is nothing left to fear on the outside.  Those threats are all external and no bother at all compared to what's happened inside! A whole new perspective. X

Community Champion

Re: May 2017 chemo starters

Jay, glad your blood pressure is normal.  Does it increase immediately after each injection? And for how long usually?  Xx

Member

Re: May 2017 chemo starters

Hey treehouse you had the hardcore stuff after your treatment a little exploring won't do me any harm at the end of day chemo makes us hard as nails doesn't it i bet your one tough cookie now treehouse not to be messed with haha!!!!
Community Champion

Re: May 2017 chemo starters

Treehouse, I dot think any of us will ever be "normal" again!  Paranoia is the new fragrance.  I agreed a 2 week rule with my GP.  I don't go in unless a problem has persisted for 2 weeks and it needs to be progressively getting worse instead of better.  Xx

Shi, best wishes for your last zap-bap-a-do-wap-a-lam-bam-boo my tooty frooty!  Sparkling all the way to the bell ring. ✨✨✨✨ πŸ’—πŸ’—πŸ’—Xxx

Mishy, the anxiety is tough straight after treatment.  Have you looked at Lola: Lifeafterlola.blogspot.com

Hope this helps. Sending hugs. Xxx

 

Member

Re: May 2017 chemo starters

Treehouse im sure it will be fine but i was just pah what next i really just put it down to a SE but obviously the chemo hss damaged my stomach so they need to check what it is meds haven't really worked trying to work out what triggers it but onc said long term heartburn reflux etc can cause nasty problems so they want to get to the bottom of it and sort it i literally have it all day every day feeling like burning in stomach foul taste in mouth and hoarseness due to reflux hey ho!!!
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Re: May 2017 chemo starters

Feel for you Mishy. The SE suck. Sorry to hear you need endoscopy. I have had several camera in all areas during this rollercoaster 🎒. Not my favourite thing but you did Chemo so you can do this. I know what you mean about sorting your head out. Keep counting the blessings. Much love x x
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Re: May 2017 chemo starters

Hi ladies hope you are all well had first follow up onc app yesterday was a long app i where i explained some of after effects from treatments neuropathy apparently will get better but not hopeful!! Indegestion reqires endoscopy as it should have cleared up by now as a SE might be an ulcer or something all i know is i didn't have it till chemo 😝 tge aches and pains are due to arthritis possible menapause as apparently there is still time for periods to return he did say if i am menapausal through chemo the majority of symptoms should nearly be over as a chemo induced one is fast!!!
Got really upset when we talked about the prognosis odds yes there in my favour but its still a hard pill to swallow knowing they really can't tell you that it won't come back i asked if there were any trials i could take part in for prevention being TN there is an asprin trial but i can't take part because of my stupid bloody stomach so thats it doesn't want to see me for a year just have mammo in April and can call directly if i have any symptoms i am worried about that last longer than a week
This no mans land is a strange place to be in isn't it when there are no pills to pop ir injections to have
Thank God for Maggies help with the counselling as i am not ashamed to admit im finding the aftermath of this journey the hardest part my mind needs to rest and recover as well aa my body πŸ’–
Community Champion

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 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
Pml
Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Hi treehouse, one more bap zap 😎😎πŸ₯“πŸ₯“πŸ₯“tomorrow πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»Then onto club Tropicana πŸ–πŸ–πŸ–treehouse you are our bionic woman πŸ’ͺπŸ’ͺπŸ’ͺand as for the β€˜normal’ if none of us are s bit πŸ€ͺπŸ€ͺπŸ€ͺπŸ€ͺafter this journey then you’d be a robot πŸ€–πŸ€–πŸ€– 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 πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺtreehouse. πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Hi Shi
Thanks for sharing πŸ‘ 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 πŸ˜‚)

😘
Shi Community Champion
Community Champion

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 πŸ’•πŸ’•βœ¨βœ¨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 πŸ€“

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 πŸ˜“ 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 πŸ˜’
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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
Community Champion

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
Community Champion

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!
Community Champion

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 πŸ’©. 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 πŸ’• 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

 

Member

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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Re: May 2017 chemo starters

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

Community Champion

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!  

Community Champion

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 Β£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