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Starting chemo October 14

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Re: Starting chemo October 14

Morning ladies, I am from November starters so couple of weeks behind you. It has been so reassuring reading your post this past few weeks ........my memory is dreadful just keep getting blanks when I try to think of things and I don't feel like my brain makes the right connections at times. Also sometimes when I speak the initial sounds of words get mixed up. I know what I want to say but by the time it comes out of my mouth eg Was asking a relative were they strong pain killers she was taking but it came out .....strain pong killers........I do make family and friends and myself laugh....BCN just says chemo brain and said do crosswords etc to get it going again. A friend whose Mum had chemo 8yrs ago said her memory was bad for about 18 months..........so nearly there. Take care all Sue xx

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Re: Starting chemo October 14

Hi mysterymouse I have been told for the next 2 years I will have a check up every 6 months this will be alternating with my onc then with the advance nurse practitioner in the breast unit then after that once a year up to 5 years. Mamo will be once a year. Xx
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Re: Starting chemo October 14

Hi MysteryMouse, lol, welcome to the memory loss gang 😀.  I'm due an annual checkup with onc for 5 years. As we found out going through the treatments, different protocols at different hospitals! x

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Re: Starting chemo October 14

Me again

 

Ha just read the last few posts and had to laugh out loud as I play the 'description' game all the time too! 🙂  I can't recall the names of ordinary house-hold items (wooden thing with 4 legs) = table or out on a walk the woody thing that sticks out of trees = bough 🙂  really relieved it's not just me but feel for you ladies who are like me!! 🙂 Not sure if this will improve with time? 

 

MM

xx

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Re: Starting chemo October 14

Hello ladies

 

It's been months since I've been on as had problems with logging on 😛

 

I hope you are all feeling a bit more positive now spring is in the air, especially LainieG who I think of often and hope is getting on ok today xx.

 

Some-one asked about how often they have mammograms?  I had my first one last October and then had to wait weeks for the results, 😞 still good in the end.  Next one due August and just 1 once a year is the plan.

 

I was signed off from my onc last July with no appointments due back to be seen again.  Have read others are still under onc every 6 mnths or 12 mnths.  How long is that for? Am I unusual just a bit confused (so nothing knew there).

 

Some-one else mentioned memory problems.  Mine is very very poor 😞  I will ask some-one something and then forget and ask again which is a tad frustrating for others.  My long term memory seems to be unaffected it's just short term.  I can't read books etc and struggle to follow film plots too.  Not sure if this is due to the chemo or side affects of Tamoxifen?  Hey ho! 😮

 

Anyway ladies, good to finally be back! 😮

 

MM

xx

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Re: Starting chemo October 14

I genuinely don't think I'd cope back at my old job, which I did for 20 years and could have once done blindfolded and stood on one leg! Think I'm going to look at volunteering again, to test the water and build up energy (which is STILL lacking) and confidence. 

 

Hope you're doing OK LainieG, xx

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Re: Starting chemo October 14

I am definitely with you ladies on this! Also looking for jobs - I don't have the brain power or energy to apply, let alone sell myself and do a good job. Second year of applying for ESA for me.
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Re: Starting chemo October 14

Linzz, you too! It's great to hear your employer is being understanding and not heaping extra pressure on you ...many aren't. xx

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Re: Starting chemo October 14

I'm in the 'whatdyoumacallit' club too! Can never remember the right word for things. I've been back at work since last April and I know that I make small mistakes all the time, especially if I'm rushed. I find myself double and triple checking everything that leaves my desk. I'll finish a report, triple check it, then leave it until next day and then fix the mistakes I missed before finally sending it. Luckily my work have been great and have never put pressure on me. I tried to explain it to my manager and she likened chemo brain to baby brain. Hardly the same, but at least she understood the concept. I find I get anxious about stuff that didn't used to bother me too Robot Sad

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Re: Starting chemo October 14

Lolol. Oh yes, I've always been pretty good at  spotting actors in different films and series but I'm now reduced to the "you remember, he played a thing in that series with thingibob in it".....complete nonsense.  Seems like a lot of us are living in comedy sketch land! I find it soooooo frustrating and it's not helping my confidence levels either!

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Re: Starting chemo October 14

Yes, me too Bettypoppit!  Fork handles exactly!

 

I have heaps of difficulty remembering names of books and films and songs, or the names of actors or singers on screen.  So our house is like one long version of charades, "you know the man in that film, the good looking muscly one. He kissed an older woman in the last one?  Her name is just one letter.   It's a very famous series of films... " (James Bond)

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Re: Starting chemo October 14

Oh Jingo-x, that is spot on about the ketchup .... conversations often turn into the two Ronnie's 'fork handles' sketch in our house with Paul trying to fill in my blanks and i also end up using a full descriptive sentence instead of just 'ketchup' 😕 lolol.  I'm going to need to start looking for work at some point soon but I can't see how I'll be able to complete the application process let alone actually do the work!!! OMG ...telephone interviews and online maths tests 😱😱😱 I'll have a look at the brain games you mention. Thanks, it's great to know I'm not the only one 😉 xxx

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Re: Starting chemo October 14

Yes Bettypoppit i do!  I am all over the shop and struggle to recall everyday words - like 'ketchup' which this week became ' can you please pass the big bottle with a red sauce in it that we use all the time' because it just would reach the tip of my tongue.  I am currently applying for jobs and did a shocking telephone interview and online maths test (against the clock!!) in the last couple of weeks.  Yesterday I went to the cellar and didnt know what for, just stood there like a lemon for 5 mins thinking there must be a reason I was there. Eventually I gave up and walked out past the freezer and then bingo!  freezer that's why I'm here.

I have started using some brain traiing apps to see if I can improve things.  there is one called Elevate and one calle Lumosity if you want to have a look.  Also playing Aplhabetty on ipad to help with my words.

 

LainieG hope you are doing ok, saw some lovely pics on FB!

 

love to all xx

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Re: Starting chemo October 14

Just wondering if anyone else thinking they have left their memory and ability to concentrate behind somewhere?  My brain feels 'empty' at times and I feel that I'm 'away with the fairies' for a lot of my day..... sometimes hours just seem to disappear!!!

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Re: Starting chemo October 14

How you doing LainieG? Thinking of you xx

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Re: Starting chemo October 14

Peta what fantastic news about Mollies assistance dog. Sounds amazing and what peace of mind it'll give you as well as the help it'll give Mollie. Looking forward to seeing the pics. Make sure you take lots xxxx
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Re: Starting chemo October 14

Hi all
Lainey so pleased to hear your eventually home, I can imagine how frustrating and annoying it must have been to have to stay In longer than needed. Xx

Peta great news for your daughter can't wait to see some pics, sounds amazing how they can train them to do all those things you mentioned xx
I'm only getting annual mammograms for 5 years saw the advance nurse practitioner end of Jan next I see my oncologist in June then back to advance nurse 6 months on from June.
this last week has been horrendous my hubby was poorly then I caught it full of cold aching and now my son has a temp and cold so I thought i need some sun !! So I've booked a holiday over easter for us didnt plan on going away but sod it !! Xxxz

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Re: Starting chemo October 14

Peta Fab-u-lous news about the assistance dog for Mollie and I'm sure it will be an enormous help to Mollie and comfort to you all once the pup is trained and in situ. Sounds amazing what support they can be trained to offer.

 

I'm having annual surveillance mammograms (1st one last Autumn) for 5 years, just had my one & only check up with the surgical team - now signed off from them and due 1st annual checkup of 5 with oncologist in May. I have to say I don't get why we get cut loose after 5 years though and I must remember to ask oncologist in May.

 

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Re: Starting chemo October 14

Oh, should have also said - congrats to Mollie on the puppy Robot Happy Pics on facebook once he/she arrives please!

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Re: Starting chemo October 14

Someone once wrote "hell hath no fury like a bald woman" and when I was having chemo that made me smile. But I guess I usually 'get my own way' by biting back the fury and making sure I know as much as I can about whatever it is and asking my questions without beating around the bush. And then asking them again to someone more senior. And repeat. Had to do a lot of that with my dear, old mum. I feel very strongly that as patients and patient's families we need to advocate for ourselves to make sure all is well. When staff are so busy it is easy to be ignored. But sometimes I do think a bit of fury goes a long way LainieG Robot wink

 

BTW Peta I am getting annual mammos. My first I also saw the surgeon who did an exam too, but next year (all being well) I will apparently be seen in a nurse-led clinic. I am hoping to have my other boob removed (for symmetry and for risk reduction) in the next few months so I guess I'll be getting just a quick fumble from the nurse come September.

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Re: Starting chemo October 14

Oh quick question!  How often are we supposed to have mammograms now, was it once a year or twice a year?  What are you all having?   I had once 6 months ago, not sure if I should be chasing them up for another one now...

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Re: Starting chemo October 14

 

Hi

 

That sounds like a good thing Lainie, let them have it!  I think they're so busy rushing around that they don't think so much about people who sit quietly and wait their turn, even when they really should do.  I've spent loads and loads of time in hospital with my daughter Mollie, and I've found super polite at the same time as very, very persistant works well.  The other ladies here may have different techniques, what do you all do to get attention or get your way?  I bet we all do it differently.  🙂

 

Oh and while I just mentioned Mollie, we went on a mega roadtrip the other day, 2.5 hours there and 2.5 back  all in one day, to go and see the Assistance Dog people down in Hampshire.  We spent the day down there being assessed and at the end of the day they offered Mollie an assistance dog! Yeay!  The sort of things it will be taught to do are help her take her gloves and socks off and help her dress and undress, unload the washing machine, move the full and heavy washing basket to the garden, get help by pulling an emergency cord and bring her her medicines and injection set if she collapses or gets really ill (it should sense when she goes hypoglaecemic before she does) and all sorts of other useful things, like bring me my phone and where's the remote!    She likes living on her own, but I think she'll be safer with a dog there to look after her.  So great result, we've filled in so many forms and assessments, so she's really delighted that they're going to be training up a puppy just for her!  😄    

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Re: Starting chemo October 14

I couldn't help it Linzz lol. I was so mad that I couldn't hold it in. I just let rip. Not like me I have to say. I'm normally one of those good patients who keeps her mouth closed. But it's amazing how a diagnosis like mine can change all that. I'm much more outspoken than I've ever been. Xxx
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Re: Starting chemo October 14

LainieG that is SO rubbish! Not only did you waste a weekend in hosp with all the worries that comes with being in, they wasted the cost of those extra nights for no reason. It happens all the time though, esp on the weekends. Makes my blood boil. I'd have threatened to self-discharge. Then the doc who arrived to do paperwork required to let you walk out would have to review why you're still stuck there - either resulting in you getting away home, or at least finding out what's going on so you can then choose to stay. I'm glad you let the doc know you weren't happy though Robot Mad

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Re: Starting chemo October 14

Feeling much better now tho still breathless if I go upstairs. Just glad it was all ok but I was so mad at the time. Glad to be home and sleeping in my own bed again. So much more comfortable xxx
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Re: Starting chemo October 14

Oh LainieG, that's totally rubbish and I too would have been spitting feathers!  How are you doing now and has your dizziness gone? When is your next chemo? Thinking of you and hugs xx

 

Interesting Junash that you blame the Tamox. for your grumpiness....I'll bare that in mind! 😉 

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Re: Starting chemo October 14

Bloody hell Lainie that's appalling and frustrating - I would have been ready to kill someone, I'm often feeling like this though - tamoxifen / menopause I blame or I've just turned into a grump. So glad scan was clear. How are you feeling? Keep on keeping on xxx
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Re: Starting chemo October 14

Hi ladies. Well true to previous form I landed in hospital again from Thurs til Mon. I phoned the helpline because of the dizziness I mentioned in my last post. I had a ct scan on Friday then waited all weekend to see a doc. I asked 5 times to see someone and was told each time that the doc was going to come and see me but nobody came. The doc came on Monday at lunchtime and told me the scan was clear and I could've been home on Friday!!!!! I was really angry and let him know it so he apologised and said I shouldve been told on Friday. So 2 days spent sitting in hospital for nothing. What a waste of time. Glad to get home anyway and tgat the scan was clear. Xxx
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Re: Starting chemo October 14

Hi Murphy. I have to agree, most people have no idea do they? I was telling my manager about my back pain the other day and she was exactly the same as your colleague. I have a pre-existing condition that would probably have deteriorated when I got to menopause, but after a year of zoladex I'm now osteopenic and the deterioration has kicked in 5-10 years before it would have done. It's very dispiriting to think that the daily pain I have now is probably only going to get worse. Though I AM still grateful that these treatments exist and are available to me. I actually envy people who have no idea - they've been lucky not to have been touched by cancer, I certainly wish none of us had been. By the way, have you looked at exemestane in your AI research? My onc has said he'd like me to move onto it at some point from tamoxifen. It seems to have a different mechanism of action from anastrozole and letrozole, so perhaps it's side effect profile would be different?

 

Lymphoedema ladies, I don't know what to say, other than to send hugs xx

 

LainieG, I like the sound of nestling in a cosy bedroom, especially at this time of year. I imagine David is waiting on you hand and foot Robot Happy Fingers crossed that the dizziness passes soon.  Take care xxx

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Re: Starting chemo October 14

LainieG that's good that you new chemo is being kinder than before and I do so hope that continues for you. Like you, I refreshed our bedroom as it felt like a sick bay by the end of treatment and like you, it is now a much nicer place to rest and sleep. I hope you can truly chill out and recharge. Thinking of you xx

 

Nicnac, Jingo-x and AMDriver - you must get so fed up battling on with those side effects and I hope it eases for you all. xx

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Re: Starting chemo October 14

Nicnac and jingo, it must be truly awful having to deal with lymphodema, I can only imagine what you must go through with the pain and swelling. As lainie pointed out, we have all been left with one thing or another, some worse than others, but no one got off scott free I don't think.  I have been lucky so far compared to others but I had an interesting conversation today with a colleague who noticed I was reading up on some research about AIs. She was asking why I was looking this up and I explained I was in so much pain in my joints etc, my hot flashes I now get on a daily basis, acute memory loss, thinning hair (to name but a few) so I wondered if one AI was better than another and if I might be better changing. She was gobsmacked, she said folk who've not been through bc would just be thinking yay, so and so had bc and they had an op, chemo, rads and now they're all better, she had no idea of the lasting affects we put up with on a daily basis. 

 

Lainie is I am pleased that you have faired fairly well with your first round of chemo. I have everything crossed for you and think about you every single day xx

 

love to all xx

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Re: Starting chemo October 14

Nicnac and jingo. Lymphodema sounds awful. It's terrible what we're left with after going through that awful treatment. AMDriver your peripheral neuropathy must drive you mad too. I think every one of us has been left damaged by the poison they used to treat us. Hope you all have some relief from it at some point. Xxx
I'm back on the poison as you all know but it's not as bad by his time. No awful taste which I'm thankful for but dizzy today. I actually fell over once and wobbled a few times. So back in bed for a sleep to see if that helps. So glad I decluttered and made my bedroom into a wee haven for me lol. It's so relaxing now xxxx
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Re: Starting chemo October 14

Hi 

Nicnac, sadly I am way past the soft and comfy sleeve options as my arm is fibrotic, and I'm wearing quite rigid flat knit Elvarex custom made sleeves...sadly wearing them forces all the fluid into my hand.  I keep getting remeasured and sent new sleeves, but it gets me down. Think I've had about 20 custom made ones now! Plus gloves and gauntlets.

xx

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Re: Starting chemo October 14

Hi AMDriver hope your first mammogram went ok and your not waiting too long for the results. Xx
Jingo not heard of that scan so yes totally different to what they do with me I've tried a few sleeves the first one I had puffed my hand up, so I was given another with a separate hand sleeve which helped just gone onto a lighter feel sleeve which is really comfy ill try and find out what mine are called
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Re: Starting chemo October 14

HI Ladies

 

sorry I have not been on here for quite a while.

 

LainieG - I would absolutely do what you have done - ask the question and then set my goal to beat the answer. It surely is time for things to go your way after everything that's happened and I have fingers and toes crossed for you.

 

Sorry to hear about lymphodema woes as well, it must be really unpleasant after everything else you'be gone through. I still have peripheral neuropathy although its lots better but it just reminds me everyday and I would prefer to forget about the whole thing as much as possible,

 

Off to my first mammogram this afternoon....

 

Love to everyone

xxx

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Re: Starting chemo October 14

I'll def look that up jingo thanks. Anything that offers a bit of hope is being grabbed with both hands just now. Re the low odds. The condition I have in my eyes started in one eye then at odds of 15% happened in the other. At my last appointment I was told there was only a 3%c chance of it happening again but I think it has. I'll find out today when I see the opthalmologist. One of my implants has deflated at a chance of 2%!! Every time I'm told something is very unlikely to happen you can almost guarantee that it will. So surely these odds should now put me in the good things to happen camp lol xxx
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Re: Starting chemo October 14

I'm with you LainieG - I would want to ask and know the answer and then rise to the challenge.  Glad to hear David is coming around to your point of view too, that is a good help.  I am also always in the low percentages and always cite my surprise pregnancy at 43 as a good example - only 0.5% chance of that happening.... if we'd been trying, and we weren't.

Ignore the suggestion if you're not interested, but have you read Radical Remission? Or looked at the website (probably best to google it as I don't think I can add it here).  The author decided to research the people who survive cancer against the odds and to analyse what they did, looking for any common ideas.  It is an inspiring book yet scientific and it helped me enormously. Although I now see all cancers as being different - like a fingerprint - the website is also good for lots of positive individual stories and ideas.

 

Nicnac good to hear your lympoedema is under control, my one arm is still very erratic and both arms ache all the time which is annoying. I don't think I had the same scan as you - I had radioactive stuff injected into my feet and hands and was scanned, then I had to be re-scanned an hour later to see where it had all gone.  It showed I have pretty much no lymph function in my right arm. In the meantime still trying to find a sleeve that doesnt make my hand puff up.

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Re: Starting chemo October 14

Nicnac lovely to hear from you. Glad it seems your lymphodema is reducing a little. Xxx
Thanks to all of you for your lovely words and for supporting me in asking the question. David has now accepted that I needed to know but I think he wishes he didn't know. I can understand how he feels. This is huge for him too. But glad he understands now. As I said I'm taking the time as a challenge. I feel the odds should start to work in my favour soon. I seem to be in the low percentage who everything happens to so surely it's time to turn that into a positive now xxxx
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Re: Starting chemo October 14

Hi All, 

Sorry not been on here and sounds like ive missed alot, Lainie how are you doing after your chemo hope your side effects are minimal, remember like everyones said we are all here for you and anyway we can help we will. I totally get why you asked, i think i would probably want to know as well. lots of love to you and your family. xxxx 

 

Peta - sounds like your holiday was fab and well deserved time away, loved the photos you put on facebook thats a part of the world i would like to see, ive just booked to take my children 11 and 8 to Florida in august always wanted to take them their so i can now tick it off my list of things to do with them. 

 

Junash - i read your post about losing your dad im so sorry to hear this i hope you are doing ok, like you said he had a very long and enjoyable life and i now free from any pain. xxxx

 

Jingo - im under the lymphodema clinic at my hospital is your scan where you have to put your arm straight and they move the machine by hand and a pic of your arm comes up on the screen, thats what i have done then they attach some wires to me to look at the flow, ive been every 3 months but it has decreased a little so i wear the sleeve when i think i need to,  back their in 6 months. xxx

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Re: Starting chemo October 14

Lainie - totally get the need to know - it's something you can aim for and go way beyond, none of us know do we. We're with you always. Hope the side effects are minimal.

Love to all xx
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Re: Starting chemo October 14

Hi LainieG, that's great that you've started your fight back and also good to hear that the dreaded sickness isn't affecting you. I can understand that you want to know what's what and being positive I'm sure will help you through the treatments and help you to focus on your challenge. I cannot imagine how difficult this is for you and David - big hugs and thinking of you and sending positive vibes xx

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Re: Starting chemo October 14

Well chemo started yesterday and feeling a bit wiped out today. No sickness or anything, just very tired. Feeling quite positive. The fight back has started. Asked the doc on Thursday how long he thinks I can survive this. Not the greatest answer and David was really upset. He didn't want me to ask but I felt that I needed to be in control. I see the time as a challenge to beat. He also said he'd look out for drug trials for me so counting on that. I'll have a scan after the third cycle to see whether the treatment is working. Xxx
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Re: Starting chemo October 14

Hi Lainie, I hope all goes well for you tomorrow with your chemo and you have very little se's. I hope you and your hubby got away for a wee break before you start this part of treatment, and you both had a lovely time Xxx

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Re: Starting chemo October 14

Hi LainieG, so sorry to hear your woes. I can't imagine how dispirited you must feel, but your treatment plan is going ahead apace and that can only be a good thing. Smaller bust = chance to go shopping for new clothes? If that's your thing? Robot Happy I can't remember if you were in the wig or scarf camp last time? You'll have rocked the look before, you can rock it again! Yesterday was lovely and bright over here, but today it's gray and dull. Here's hoping for some more nice, crisp spring days for you to enjoy really soon xx

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Re: Starting chemo October 14

lainie isn't that just the icing on the cake - keep your chin up. Am thinking about you often and sending you virtual hugs, wine and smiles. Xxx
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Re: Starting chemo October 14

Hi ladies. Hope you're all ok. I had to go to plastic surgery today because one of my implants has almost completely deflated. Choice was remove it and put chemo off for 6 weeks or leave it and reduce the other one to be less lopsided. Needless to say I now have a smaller bust. Hair started falling out again too so feeling very attractive lol. Chemo starts Friday. I'm full of moans today but had a nice walk around city centre and felt almost human again 😊😊
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Re: Starting chemo October 14

Hi Jingo

 

Sorry to take so long to reply! I'm sorry to hear that your arm isn't doing so well, but it's good to hear you can take one sleeve off ocasionally now. 

 

You've booked your Borneo trip! Brilliant news.  I checked with Mark, he says that we used a company that he found through Compare the market.com - they asked for lots of details about the breast cancer, treatment, grade, number of nodes etc, where we were going and for how long and then a number of insurance companies responded with quotes.  We paid a bit under £100 for 14 days which is way more than we used to pay before, but I suppose it's understandable.  We did have really good cover for that, as I didn't want to find myself stuck in a hospital in Thailand!  

 

I hope everyone is doing well and coping! xxx 

 

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Re: Starting chemo October 14

Hi LainieG,

Excuse me gate crashing your thread but we used to chat on the radiotherapy thread when we were going through that together and you always made me laugh. I'm so sorry to read of your further problems and treatment. As I'd had BC previously in 2002 and then it came back in the other boob 2014 I had a portocath fitted  for the chemo (as had had all lymph nodes removed.) It made life much easier so I wondered if that could be an option for you? I guess there may be a reason that they haven't suggested it. I do wish you all the very, very best ,

Love Gill x

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Re: Starting chemo October 14

So sorry to hear about your dad Junash. Sounds very similar to my mum, she had had enough by the end and then just slipped away. It's still a shock when when it happens though. Take care xx

 

Jingo - well done for ploughing ahead with holidays despite your lymph problems. I do the same with my back, I figure it hurts at home it may as well hurt somewhere far more exciting Robot Happy I don't think BCC allows us to post stuff about companies, but I have a long list of insurance companies that I picked up from another of my online groups. I'll message you on here xx

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Re: Starting chemo October 14

Junash. So sorry to hear about your dad. Such a sad time for you and your family xxxx
Peta and Jingo hope your lymph problems start to ease a bit soon. It's rotten that you're still dealing with this. Xxx
I'm feeling ok at the end of my rads. Tired and a bit fuzzy headed but that's all so far. Because I have to have chemo through iv the doc said he thinks I should risk allowing my left arm to be used as he says risk of lymphodema is miniscule but the thought of adding yet another problem is worrying me. But it's that or be stabbed multiple times to get the cannula in. Talk about between a rock and a hard place xxx