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June 2018 Chemo Starters

Embolorry
Member

Re: June 2018 Chemo Starters

The force is strong!
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Lisa Marie,  sorry to hear you are suffering with the mouth too.  I have to say so far my mouth isn't as bad as on first T but not sure if that will last, I am using salt mouth wash and have some Fluxonole stuff to take to stop getting thrush again but it is still feeling slimy and tasteless.   I too can eat soup and also, weirdly, quiche! Sucking mints helps too oh and something the Oncologist told me was to get the Vit C tablets which are supposed to be disolved in water (they come in a long tube quite cheaply Tesco etc) and instead of disolving one in water just sit it on your tongue and let it fizz, it does help cut through the slimyness for a whilte.   Lots of things have a horrible feel though, like coated in lard, I can't taste potatoes at all and for me salty things don't taste of much either, had dry roasted peanuts last night which didn't taste of much at all, but still ate them as starving!  I made a lovely shepherds pie too but I couldn't taste it, mashed potatoe is vile at moment!!  I think you still look lovely,  I really miss cheese, my all time favourite food and that tastes of wall paper paste at present... although the mini marmite ones are passable.  Chocolate is vile too.. boo hoo, I should be losing weight, but still seem to be putting it on!!

I have managed to escape any aches and pains so far, but as I've only had 3 jabs as yet it may happen tomorrow, sleep still hit and miss too, hot sweats and steroids not great for that are they!  Only other SE is my thumb feeling numb and tingly, are you getting that?

I keep saying I look like Dobby out of Harry Potter without my hair or Yoda from Star Wars which makes my family laugh, especially as the eyebrows are virtually gone and the eyelashes too, but the hair on head is coming back.  We have to laugh don't we otherwise what would we do....

Kip aka Yoda

 

RedRose
Member

Re: June 2018 Chemo Starters

Aww shucks thank you ladies. Got one blue and one green Shi, the green one changes with the weather and my mood much to the amusement of my step daughter. She is always looking and telling me what color it is that day. It’s a bit of a fade to one side blue to green mainly. Thinking of shaving the fluff off but only 2 more sessions to go so not sure. Actually ate and enjoyed dinner tonight and could taste it! Heinz chicken noodle soup 🍜 with prawn crackers dipped in. They literally melted in my mouth. Easy to eat and got some nutrients so I’m happy 😊. Hated feeling hungry and not enjoying anything. Think it’s just trial and error for us all and personal taste buds xx
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Lisa, you look beautiful and are beautiful ❤️❤️ Amazing blue eyes 😘😘 I drove my hubby nuts saying do I look like a turtle head, I must have asked a zillion times a day at one point, so if you look ken yourself to krytrn then that’s up to you, you don’t by the way, you look more like Hattie ❤️❤️ And I love a bit of red dwarf too, classic ❤️❤️❤️Have you tried a bit of frozen pineapple or frozen ginger for your mouth too and some rubbed and custard sugar free sweets from m&s can work quite well too 😘😘hope that helps lovely 👭👭👭💕💕Shi xx
ktk
Member

Re: June 2018 Chemo Starters

You look beautiful Lisa x. I found that I needed to add a lot of salt to food to be able to taste anything. Still felt hungry though. My daughter froze some cubes of watermelon which was very pleasant. Look after yourself and don’t lose your sense of humour!!! Kxx
RedRose
Member

Re: June 2018 Chemo Starters

As you can see, not looking my greatest with no make up and hair and eyelashes situation. I keep joking that I look like kryten from red dwarf but my OH keeps frowning at that. Love that show but must stop saying it because it obviously annoys him xx
RedRose
Member

Re: June 2018 Chemo Starters

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RedRose
Member

Re: June 2018 Chemo Starters

Not got a picc line, mine has just been cannula into a vein in hand and didn’t have piriton or anti histamine with it either just the T. Had no sickness on the T only had swollen throat but that of course could be due to my darling other half. I can’t really compare my first T se to the Fec se because of the virus but I do know mouth is dryer and skin is dryer. Eyelashes are thinning and what little white fluff I have on head is falling out, got barely there eyebrows already so they just gone patchy now. It the not being able to swallow and not tasting that doing me on the T. I’m hungry and Ryan keeps making me lovely meals but I just can’t eat them 😔 as the consistency makes me gag, to gluey and sticks to mouth or no taste. What everyone else eating on the T? Xx
ktk
Member

Re: June 2018 Chemo Starters

Hi CDC The Picc line takes less than an hour to fit including the X-ray to check it is in place. Also T takes less time than FEC as it is one infusion instead of multiple syringes. I was in for only about an hour with my first T. Felt a bit woozy due to the Piriton but fine afterwards. Definitely no nausea 😁. Good luck with it all. Hope T treats you better than the first lot. Kxx
SallyG63
Member

Re: June 2018 Chemo Starters

Never grown....
SallyG63
Member

Re: June 2018 Chemo Starters

I still have head hair and eyelashes but no eyebrows. Want much there to start with as I had a monobrow going on when I was young so started plucking when I was 12 ( when thinbrows were in ) and stopped when I was about 20. They have needed er growntree back
cdc1811
Member

Re: June 2018 Chemo Starters

Hi Kip

I’ll keep everything crossed that cycle 2 of T is better then the 1st. The salt water has definitely helped me on AC so hopefully it will do the same on the next regime. Simple but effective. I still have such bushy eyebrows it’s weird! Also seem to have developed side burns. What is going on?? I have some eyelashes but definitely fewer. Slight sign of very white fluff on my head itself. I hope I can get on to an LGFB course soon. I’m so pale I’m going to become invisible otherwise!

Sending my very best wishes to everyone xxx
reddi
Member

Re: June 2018 Chemo Starters

@cdc Happy news from Barts! I did win a free oncology massage from Gazelli House via Ellie's Friends -- but I haven't had it yet. It's booked up for 18 Sep, so might need to be rearranged to fit around whenever I next get chemo. 

 

I highly recommend that everyone check out the freebie lotteries at Ellie's Friends -- I also won a visitor pass to Blenheim Palace, which I've never visited, to be used sometime between now and the end of the year. Lord knows I'll need a little cheerful day trip in the next month or so, after these dark days of limbo.

 

Off to drink another litre of water. Practically the best thing I can do to nudge my liver back to a happier place.

cdc1811
Member

Re: June 2018 Chemo Starters

Thanks for the helpful advice about PICC covers ktk, Jencat, LJ and Lisa-I’m going to look into options before I get mine fitted on Tuesday, I presume everyone gets a sort of tubi-grip cover when they first have it put in? How long does the procedure take? I’m having mine fitted at 11am and will have my first dose of T after that so I’m imagining it will be a long day as they have to administer the T slowly on the first occasion I believe to check for allergic reactions,

I’m so sorry to hear so many of you are really suffering on T and it’s equivalent. Sending gentle hugs-the bone pain and dodgy stomachs spins particularly grim. A friend is joining me at my chemo appointment on Tuesday and she’s been through it all too. I’m told I should carry spare knickers around with me!

On a really positive note the other oncologist at Barts has said he’d be delighted to take over my care! So pleased as I found him so much easier to communicate with- he’s pretty direct but at least I understand what he’s saying and vice versa.

Reddi I’m so sorry to hear about the chemo being on hold. I’m sending your liver a stern telling off from afar!! Hope it starts behaving itself soon. It must be horrible not knowing when things will get going again and having to put everything on hold. I hope everything can go ahead on Thursday. Thanks so much for reminding me about Ellie’s friends. Barring any issues I now have a free oncology massage booked at Gazelli House for October.. Is that where you Went?

Lisa Marie Such an anxious time for you especially after reading the similarities with Rachel Bland. As Kip says though we don’t hear all the positive stories in the news. My OH felt the reports should have been tempered somewhat. I inadvertently saw the headline on a freebie newspaper so it was totally unavoidable and I found it upsetting. Hope you get some answers from the GP and gene testing which will enable you to move forward.

Hello Mimi Encouraging news about the shrinkage. Hope your last two cycles are bearable. Nearly there
cdc1811
Member

Re: June 2018 Chemo Starters

Hi Kimini I start 3 weekly docatexol on Tuesday. I’ve had horrendous nausea during AC which is very similar to EC. unfortunately I just spoke to my BCN has said as I fared badly on my previous regime I might well have problems with SEs on T. Oh joys! I found out that there is a very high risk of nausea with AC (no one bothered to tell me beforehand and I never got my pre-chemo appointment) I’m sorry I can’t be more positive but I have also heard both paclitaxel and docetaxol (sorry I never can remember how to spell it) are less likely to cause nausea so I’m hoping that’s the case. Thinking of you and here’s hoping for minimal side effects if any. How are you doing today?
cdc1811
Member

Re: June 2018 Chemo Starters

JaquB I know what you mean about not having the mental energy to complain effectively. Apart from problems with diagnosis and issues with allergies and surgeries, I think this is what has happened with my oncologist. If I’d felt stronger I could have just said ‘Will you stop looking at the b***y clock and listen to me. I’m suffering here and I need your help!’ It’s so hard hen your feeling emotional and physically weakened. Hope you are doing ok 👌
cdc1811
Member

Re: June 2018 Chemo Starters

Hi Sally

 

iI’m appalled to hear your experience with delays in being seen.  I do so hope that your case is properly investigated and you get some answers and aren’t just fobbed off with ‘acceptable timescales’ twaddle. I’m sure I’ll get the same when I put in my complaint.  It’s just such hard work even contemplating talking with PALS when I’m not feeling 100%.  There have been a fair few errors (and inconveniences such as not having a bed pan free after my first surgery, very humiliating and cancelling my pre-chemo appointment at 7.30pm the night before I was due to go in the morning) At the beginning of June I was told by the surgical team that there was going to be an investigation to check out all my previous mammograms and ultrasound images to see if they missed anything but I’ve not heard anything since.  I was recalled last year in June for an ultrasound but they just found I had a lot of cysts.  I wonder if the tumours were already growing by that stage.  Who knows??    The dog sitting does sound challenging but I’m sure your daughter was delighted that you could help out!  Hope yestedays physio helped and your got your green slip and also that your stomach has settled.  

 

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Reddi,

Thanks for the tips re taste buds and bone pains... I'll take them on board.. anything worth a try.

So sorry to hear the problems you are having with liver tests and next chemo,  having delays must be such a nightmare and you sound like you have so many things organised to fit around the appointments too.   I'll cross my fingers for you that everything gets sorted, our poor bodies have to take on so many drugs and things its no wonder our livers complain once in a while.  Hopefully the MRI results will show better results from the chemo than you can feel, try to remain positive, I know thats hard and people saying it all the time can be frustrating... you'll soon be back on chemo and wishing the SEs away!

 

Lisa Marie- thanks for the website, not in my area but made me smile at the thought of being a model!!

 

Kip

x

RedRose
Member

Re: June 2018 Chemo Starters

Live better with cancer are looking for models for their new headwear collection. Xx
RedRose
Member

Re: June 2018 Chemo Starters

Morning ladies, feeling a little brighter today. You all live closer to London than I do right? Just saw this and thought I would pass it on in case any of you fancies embracing your hair loss and being a model for the day? https://livebetterwith.com/community/hair-loss-models-search/?kinsta-cache-cleared=true&utm_source=f...
reddi
Member

Re: June 2018 Chemo Starters

Oh, my: so many things. 

 

@Lisa Marie: I hope you are feeling better soon. And I hope the scan on your arm helps to resolve those problems asap.

 

@Sally: Keep fighting -- to get better monitoring going forward, to improve the system, and to keep the fight in you. 

 

@Kip: I tend to get bone pain from the injections around day 3. Antihistamines did seem to help calm them -- though I was taking them for hay fever, I noticed it was better in cycle 2, and it seems that might have been why. On taste, I found that my DIY electrolyte booster helped with my buds during FEC -- glass of water, 2 tbsp lemon juice, pinch of salt, drop of maple syrup. It may not work for everyone, but maybe worth a shot? And pineapple bypasses the taste buds and stimulates the trigeminal nerve, which may be a nice way to revive sensation of taste.

 

For me, chemo on indefinite hold. It seems my liver enzymes were still bad in Tuesday's bloodwork, so I'm now scheduled to see the oncologist next Wednesday, with bloodwork the day before (rather than day of). I'm thus now anticipating first TPH no sooner than next Thursday & Friday --  2 full weeks after my original schedule. And that's if I'm lucky with liver recovery. 

 

I doubt FEC has done much to the HER2+ right IDC/DCIS, and it's only shrunk my HER2- left lesion a little bit, so far as I can feel. (MRI results might say something else, but I won't get them until next week.) 

 

I want my HER2 drugs -- especially after your great report, @Mimi! (Welcome!)

 

To say this is a huge bummer is an understatement. It's also left me feeling completely out of control -- I had everything planned, between work and complementary therapies and dentist appointments and everything else -- and now everything is in flux, and I haven't got a clue when I'll be able to get things back on track. And my mantra of taking things one day at a time doesn't really help when I feel as though nothing is happening, day after day.

 

Stupid liver.

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning ladies,

Lisa Marie - oh dear how kind of your OH to share his bug with you, hope you are feeling better today though.  I think 1st T does seem to be worse than 2nd so far, but as I am only only day 4 I could be jinxing it, I think I know what to expect this time round.  So far no bambi legs or aches, I am having the injections too this time round so it could kick in shortly as only had 2 so far.  Embollorry said she is taking paracetomal before her jabs this time round and the pains have only been minimal?   I have a slightly slimy mouth again but am taking Fluxonole or something like that to help keep thrush away and swishing with salt water every time I eat to try to keep on top of it, taste is a bit missing too!  I think the news about that lovely lady passing has hit us all, regardless of our diagnosis, I had a tough day too but we must remember that its only the sad stories that make the press usually and those success ones are still out there and in great numbers too!   I should think with all the upcoming appointments you have you are bound to be worrying, I'm dreading my next appt on 19th Sept with surgeon to see what/where/how many nodes are being removed next.  I know I've had surgery already and managed ok and have no problems but its still something else to think about isn't it.  I'll be keeping my fingers and toes crossed for you. 

Sally - that sounds awful that you have to deal with the issues surrounding your treatment, you can do without anything else to think about at this time can't you, but don't let them get away with it!

Hope everyone else is ok today, no toilet issues happening or sickness!   I've just realised today that I have hardly any eyebrows left now.. .how strange that the hair on my head (and toes!!!) is really growing and now eyebrows are falling out... thank goodness LGFB course showed me how to do eyebrows, although they don't really match.. but as the lady said "Eye Brows are siblings not twins!" hee hee.

Take care ladies...

Kip

xx

Mimi78
Member

Re: June 2018 Chemo Starters

 

Mimi78 

Member

8:56 AM

Hi all

I've been a lurker on this forum. I was diagnosed in April. Started neoadjuvant chemo in June. I'm on herceptin, perjeta carbo and docetaxel. I felt the lump shrink by day 3 of 1st chemo and my onc could not feel the lumps by the time cycle 2 was due. I was really pleased with that. I still have my moments and having chemo is difficult I've been admitted into hospital twice the most recent was on Sunday as I was so dehydrated from the diarrhoea that my electrolytes and potassium levels were low. The onc won't reduce the chemo. I still have 2 cycles to go!!! Sending positive vibes to everyone!!

RedRose
Member

Re: June 2018 Chemo Starters

Goodness Sally, that sounds a horrible situation. I was told 2 weeks to get an appointment at breast care clinic, within 31 days for diagnosis and treatment to start within 31 days of that. Why turn you away? 3 step diagnostics apply to all, ultrasound, mammogram and biopsy. So 22 months is unexplainable. Sending you big hugs. If they not doing their jobs they need telling. We go through enough as it is without any further unecessary treatment or stress being added to it xx
RedRose
Member

Re: June 2018 Chemo Starters

Sorry I missed your Birthdays ladies, Belated Happy Birthday 🎂🎁🎉 to you, hope you had a wonderful day and celebrated it style 😘 xxx
RedRose
Member

Re: June 2018 Chemo Starters

Morning ladies, another fitfull day due to bone aches for me but at least I’m awake. 1st T and a virus from my other half left me a sleep for days, major sore throat and ears ringing. Just starting to feel something like normal now but not liking the Bambi legs, not tasting food or issues swallowing. I agree about Rachael Bland, her poor family and friends and my heart goes out to her little boy. Been reading her blog and she is similar to me on age, situations and diagnosis and age, so had shed some tears tonight thinking of them and my own mortality. Feeling very on edge emotionally on the T. But that could also be the appointments coming up, cancer review with gp, Doppler scan on arm because it’s still not right, T. rex and now has bruises in shapes and dints all over. Plus received appointment for genes test results 😨. Bricking it is not the word. Triple negative at 39 with no history of breast cancer in family. Have it in my head that will be BRCA 1 or 2 and the ending of treatment at Christmas will turn into more surgery (double mastectomy and hysterectomy) and the chance of never having kids. Sorry to be on a downer ladies just scared and emotional xx
LJ
Member

Re: June 2018 Chemo Starters

@kimini - side effects of Herceptin include bone/joint pain, diarrhoea, fever and runny nose. I've had all of those, some of which will also be due to Taxol so it's difficult for me to tell which is attributable to what drug!  My second injection is due next week with the next does of Taxol. 

 

LJ

Jencat
Member

Re: June 2018 Chemo Starters

Hi cdc, I bought my plastic sleeve in Boots, it was about £5 x

SallyG63
Member

Re: June 2018 Chemo Starters

Hi Kimini

I don't know about the Herceptin but I'm having the weekly paclitaxel. Side effects on it are minimal. Another lady I used to see when I was doing EC was also doing paclitaxel and she had no side effects at all so that part of your chemo is very doable. Hopefully someone else can tell you about the herceptin.

JacqB,

The ball was well and truly dropped on my diagnosis and treatment. When I think about it I get so angry because although the treatment I'm having is no worse than anyone else's but I shouldn't need to be having half of it at all. I was very lucky that the cancer hadn't spread outside the lymph nodes.
Kimini
Member

Re: June 2018 Chemo Starters

Hi Ladies

Sorry i tend to pop in and out of this chat,

 

I have just started 12 weekly course of paclitaxel with herceptin every 3 weeks 

Has anyone else had this ?  wondering wht the side effects might be please?

 

I have just finished 4 x 3 weekly EC chemo and had relly bad nausea and tiredness from that

 

Thank you 

 

Kim

JacqB
Member

Re: June 2018 Chemo Starters

Hi Sally
I hadn’t realised that your treatment had been so compromised. Sorry to hear this, it sounds like you have every reason to rant! It’s hard to find the mental energy to complain effectively and stand up for yourself when dealing with cancer treatment and all it entails. I’ve been unhappy with aspects of my care but I just haven’t the energy to deal with it. Sending positive vibes for you moving forward with your complaInt. Stay strong 💪
Jacq x
SallyG63
Member

Re: June 2018 Chemo Starters

HI.

Cdc, the dog sitting was challenging cos my daughters dog is a little **bleep**! Chihuahua cross jack russell . My Patterdale is nearly 10 and she'll play and entertain him for so long then tell him off. My cats weren't too impressed but at least the boy, Uhtred is bigger than Milo so will give him a swipe if he tries it on with him. Had a very upset stomach yesterday but I think that's something doing the rounds cos my daughter had the same a couple of days last week. Just made it to the loo at Waterloo as I got of the train to work. Physio this afternoon. Having it regularly because of the problems the ANC has caused. Need to get my green slip for blood test for Friday's chemo cos they for got to give it to me last week.

I've now done 5/12 of the T so only 7 weeks to go. Hair still hanging on with the cold cap and still no side effects to speak of. Once that's all done I can give my full attention to my complaint ease I've still not had any sort of satisfactory answer as to why I was sent away 2 years ago when I first got referred and then got overlooked for 3 months when I went again in October. Just a load of waffle about how I was tested within acceptable timescales. We'll the timescales are from diagnosis. The fact that I should have been diagnosed 22 months earlier seems to count for nothing. Had that been done it probably wouldn't have been in the lymph nodes and so I wouldn't have needed the extra surgery, probably wouldn't have needed chemo and certainly would've been left with extensive nerve damage.

Someone, somewhere is going to pay for this. Even if I lose someone, or several people, their jobs.

Rant over.
Linda Corinne
Member

Re: June 2018 Chemo Starters

Cdc you can use cling film over your picc line if you dont have a cover or if you go away although its easier if someone else wraps the cling film round your arm.x
ktk
Member

Re: June 2018 Chemo Starters

Hi LJ. It is the T!! Two weeks in and the first time I have felt able to go out! Spent the last week on the loo☹️. Get to do it all again next week. Can’t wait! Kx
LJ
Member

Re: June 2018 Chemo Starters

Ref the PICC line. I bought a plastic sleeve, but the IV nurses also gave me a prescription request for the GP for a slightly different one (a Limbo). I go to see the IV Therapy nurse team each week who are based on the hospital site for the flush and dressing change. 

 

I finish one course of ABs today but the other last until Saturday. They're not helping my toilet visits so I'll be glad to see the back of them!  I read up about Herceptin side effects (had my first injection with T1) and what d'ya know - diarrhoea, bone ache and fever!  I'm doomed!  I did also read about the benefits of taking Claritin (or another anti-histamine with the same main ingredient) to help with bone pain from the injections and T so I'm going to give those a whirl. 

 

Have a bit more energy today, but certainly not where I was at this stage of FEC. Of course I'm not sure whether that's T or the after effects of hospital and ABs. 

 

Have good days ladies 

 

LJ

 

 

 

 

ktk
Member

Re: June 2018 Chemo Starters

Hi Clare. I was given a Limbo for the shower. It works really well. I hope you can get your flush done locally. It would be a pain to have to go to hospital as it takes less than five minutes. The Community nurse who has just done mine is one of my ex students. It was so lovely to see her except she spent most of the time in tears as I asked about her mother who she lost to pancreatic cancer a few months ago!
cdc1811
Member

Re: June 2018 Chemo Starters

Thanks for your support Kip. Also encouraging to hear you haven’t had any sickness on T although the other SEs sound tough. Hope you’re not in too much pain.

ktk I so hope your 2nd cycle of T treats you more kindly. Sounds like the first T has been hard on everyone. I’m getting a PICC line before my first T on Tuesday. I’m actually looking forward to getting one now!! Only concern is how to shower- we’re you given a plastic sleeve or did you have to buy one? I’m still waiting to hear who will do the flushing. Not sure if I’ll have to go to the hospital each week or if I can get it done by the nurse at my local GP practice.
Hope you can enjoy the sunshine. It’s dull and so cold here in Highbury!

My daughter went back to school today. Starting Year 5. Where did that time go????? Have to say whilst I’ve enjoyed spending time wth her in the holidays, I think we were both ready for her to go back. She’s missed her friends and I’ve missed the opportunity to have naps in the daytime! Can’t wait for a lie in at some point.

Best wishes to everyone xxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Counselling definately looks the way forward for us, I am going to try to do the moving on course, once the treatment is all done, I will need something I think... its the emotional stuff that is so hard isn't it.  Beginning to feel odd about the end of chemo already, and I couldn't wait for it to end!   Its just another step I guess but a step into the next unknown!   Feel like a flippin' spaceman with all this unknown stuff! 

 

I'll probably need a diet club too by the end of treatment... can't stop eating even with fat tongue! 

 

Paulus - so glad i hadn't offended you or anyone else, would hate to think I had as you guys all keep me going!!. I don't know how to delete either, I'm forever editing my posts as my tablet makes up the craziest words (you've probably all noticed.... I can spell really...Smiley Surprised

 

Kip

xxx

 

 

 

 

cdc1811
Member

Re: June 2018 Chemo Starters

Hi Embolorry

Just wanted to send you a huge hug and say I think you are doing exactly the right thing to talk to a counsellor. I haven’t seen my therapist for over a month as she’s been on holiday but I have an appointment today and I’m hoping to get back on track with dealing with the mental side of things. I too feel sicker than at diagnosis!! Thankfully I’m on my ‘good’ week so having some respite from SES. Thinking of you xxx
ktk
Member

Re: June 2018 Chemo Starters

Morning all. Well I have made it up today at least! Bit of tummy ache but not having to rush to the loo. All is not right, but hey ho!! Glad those of you who are on T2 are coping well. It gives me hope for next week as I have really not been able to do anything for the last two weeks.

Very sad about Rachael Bland, I think especially for the TN ladies. BUT everyone is different so we must all continue with our journey. Her poor husband and son though. Makes me so sad.

At least the sun is shining today although there is definitely an autumnal nip in the air. Nurse coming soon to flush my Picc line. Love to all. Kx
Embolorry
Member

Re: June 2018 Chemo Starters

Morning all,
Day 10 after T2, and back at work (shortened days and not really doing much), still injecting the Filgrstrim at night and taking lots of paracetamol throughout the day / night. Not yet n as much pain as the T1, and feel much better (relatively).
I had a very low day yesterday after reading about Rachel Bland, I can’t bear the fact that she has such a young child, it’s so sad.
I guess we all have to live whilst we can, cease the day and all that!!
I have booked myself in for some counselling in October as I feel that mentally I am feeling worse as the treatment goes on (think I am sicker now than I was at diagnosis in April!)...
Anyway hope you all have a lovely very day and not suffering!
Hugs to all,
Xxx
Paulus
Member

Re: June 2018 Chemo Starters

Nooo Kip, you didn't offend me at all  -  in fact what I was writing was waffling on, and when I read it back, I thought I might upset or offend someone!!!  Is it me that if we want to remove one of our own comments, we have to just delete all the words using the 'edit' facility?  or am I missing a 'delete' button somewhere?

My dear Kip, having seen you here since I first ever looked in, I think you are too lovely to ever offend anyone. Hugs aplenty x

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Cdc so glad you are getting somewhere with the hospital, its just a shame you have to do it in the first place but its verh important we feel listened to and answered properly... And as you said if OH comss away feeling the same then it cant be right!  Hopefully with a new onc in place things will improve!

cdc1811
Member

Re: June 2018 Chemo Starters

Oh no Reddi How frustrating. I think we all just want to get chemo finished as soon as possible so any delay is a real blow especially, as in your case when the chemo is neoadjuvant and you want the tumours to shrink as much as possible . I have similar issues with regards to date for my mastectomy as I’m unsure whether I’ll have it before or after Christmas. My OH has a business trip to SAN Francisco during half-term in February and I have relatives there and love the place so I'm hoping Surgery will be done and dusted and I’ll be recovered enough so my daughter and I can accompany him.

Kip it really is such sad news regarding Radio 5 presenter.

I got an appointment with my GP yesterday to discuss issues regarding my dissatisfaction with my onc. She was so supportive!! She composed a letter to the oncologist we would prefer to see and she said she’ll get it typed up urgently so I can pick it up today and hopefully I can start the second half of my chemo afresh. I let my BCN know too and she says she’ll ring me today. I’m wary of creating a fuss but my OH is also unhappy with my current onc. She acts like I’m talking gobbledegook when I try and explain anything even though I think I’m pretty articulate. My OH also feels this way when he’s come with me and considering he spends his working days talking and advising medical specialists and consultants including some of the UKs top oncologists I don’t think it’s me just not explaining myself properly!

Hope everyone has a good and SE free day xx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

So day 3 of 2nd T...  So far ok, constipation again but lactulose sorting that, sleepness nights as usual...  I spent a good few hours going through the alpahbet trying to remember the name of some crisps... Turns out they are Tyrrels...  No idea why i needed to know that but my brain wouldnt stop!  Had first injection last night, so far ok, no pain.  Bit of indigestion so slurped some gaviscon znd now eating breakfast ready for more steroids but down to 4 a day today.  Salt water washes after every meal too so a lot to fit in... 

Hope everyone doing ok.  Ktk hope the toilet issues rectifie and cdc hope the sickness sorted too.

kip xx

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hope i didnt offend you paulus with my post

Paulus
Member

Re: June 2018 Chemo Starters

Deleted my comment x

Jencat
Member

Re: June 2018 Chemo Starters

Yes that news has really shocked and saddened me too Kip, so young and with a little boy of only two. I was only reading a little while ago that she thought she had less than a year and then yesterday only days, it's so sad.

On a personal level it upset me as her bc is TN like mine, but as you say, there are good news stories out there. I personally know of two ladies who had TN bc and are 6 and 10 years clear.

Thank you for your big hugs Kip and sending one back x

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi all, just had to say the sad news story regarding the lady with breast cancer... Rachel something... Has really rocked me... So wanted to send big hugs and positive vibes to everyone.  Tryjng  to remain upbeat and remember we never hear of the good news stories do we?  They are

out there though! 

Kip 😘

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh Reddi thats tough for you. I would kmagjne its all the chemicals affecting thr liver more than the cheeky drinks but i am doing the same just maybe one drink per cycle... Roll on Christmas! ;