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February 2019 chemo starters

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Re: February 2019 chemo starters

Morning all and Trixielady nice to hear from you.  I am feeling so much better.  Think Ive worked out the sleeping issue as last night when I woke up instead of stressing and looking at the clock I just turned over and fell back to sleep.  Although not ideal it is so much better.  Didnt actually get out of bed until 6.30 and then went back until 8.30 which is my kind of normal getting up time now.   Feel so much better and ready to face the world.  Does anyone know how long the hot sweats last on Anastrazole or will it be forever?  Its amazing what tiredness actually does to you physically and mentally and as long as I get some sleep I can cope.

Hope you all have a great Sunday.  The sun is shining again here and looking forward to a nice dog walk after seeing my mum.

 

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Re: February 2019 chemo starters

Morning lovely ladies 

Well its doesn't matter where we are when we're aren't well, I'm so glad to be home and really disappointed in myself!! but I have realised for some reason the stairs are a big factor in my breathlessness and aches and pains!!

For some reason probably chemo brain I'm really struggling to keep up with all your health issues but always thinking about each and everyone of you, so big hugs giving love and strength to continue to deal with this barry thing and good luck for those trying to return to work.

Marlyn where actually are you from again?? Xx

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Re: February 2019 chemo starters

Hi everyone 

 

Well after feeling less tired over the past couple of days I thought I was slowly getting over chemo fatigue😪😪😪 , but no, I'm almost back to square one⏹🔙 and definitely not a happy bunny🐇. Hubby had me in tears last night😢😢. He was moaning about the shower in our en-suite not being as good as the one in our bathroom. He refuses to use the en-suite one and reminded me that I didn't want to replace it. 'Course I didn't as a my chemo hair wouldn't cope with the stronger flow of water and trying to get the thing installed around appointments, good days when I could vacate the bedroom early and other things just made it all seem too difficult this year. It's bad enough having to cope with this Barrying bc without feeling guilty about the way it's impacted on our daily lives and being reminded of that. Rosina, if I'd have had a glass of water to hand I might have been tempted to chuck it over him too. It didn't help that he couldn't understand why I was so upset so that made me even more angry. Think he understood in the end. Anyway intend to get new shower🚿 next year.

 

Daisydi, I felt the same as you yesterday going for my PICC care wearing jeans which I haven't worn since FEC chemo ended in April. It made me realise just how long I've had treatment for. Even knowing I've only got one session left isn't making me feel any better. I'm sure the fatigue has got a lot to do  with the way I'm feeling at the moment😪😪😩😩.

 

Edinbird, hope you start to feel better soon. I understand about not being able to face taking painkillers. I got to the same point with Gavisgon where I actually felt sick taking them. Fortunately my oncologist was sympathic and prescribed a tablet to take daily. CT planning on Monday - result ☺👍.

 

MBJ, I'm beginning to wonder if your onco overdosed you with the chemo. Weighing you with boots on just doesn't seem right, then is he upping the dose a bit more? Is it possible you had 110% rather than 100% to start with? I think I'd start asking some questions when I felt up to it. On the positive side you may start feeling that by stopping the chemo you did infact make the right decision. 

 

Love to everyone xxxx

 

 

 

        

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Re: February 2019 chemo starters

Edinbird seems like this hell is going on forever doesn't it?  Ive just put on a top I used to wear at the start of my chemo in Feb when it was a bit chilly and it really brought everything back.  How long ago that was.  I feel a bit better today as I am back to waking every couple of hours but at least I got some two hour sleeps in.

Marie such a good job you made the choice of having no more chemo.  What amazes me is that we get our hearts checked before chemo and then nothing after so who knows what damage it has done.  I hope the medication does the trick for you and that you will soon feel better.

Love to all xx

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Re: February 2019 chemo starters

Marie I feel so bad being in my heart trial - yes it might have stopped something like this happening to me but equally you didn’t get the chance to go on it 😕 I have packets and packets of the pills here that will just go in the bin because they prescribed me too many since I halved the dose after I was dizzy on round three. I’m really grateful I’m on it and it concerns me that I won’t be for the oral chemo, not that that’s the same at all but still.

 

Sat around feeling pap today - stayed up late for me watching a film, only had two glasses of wine. My stomach started playing up so I went to bed straight after at 11 and had a restless night filled with grumbly and rather revolting belly which meant I couldn’t lay down properly, more sweats which have gotten worse the last few nights (must be my period trying to wake up I guess?) and then woke up about 7am with legs reminiscent of T... fabulous. So they were aching too much to get back to sleep. Feeling a bit less sore sitting on the sofa but I’m too tired to feel better. And in that yucky phase where I know painkillers would help but the thought of them is enough to not have them. I’ll probably get some with lunch. Will go out to the shop later and see if moving around helps. Just what I need when I’m back to work on Tuesday 😬

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Re: February 2019 chemo starters

Mbj,

 

what can can I say? I'm truly smacked in the gob. It makes me so very grateful I had a heart scan just after cycle 1 ( I've had 3 in total ) 

Thank the lord you stopped at one cycle, it doesn't bare thinking of if you'd carried on! Do you know the stage you're at? 

 

I know after my first cycle landed me in hospital the onco  told me it was 100% dose, they start off on the full whack and adjust accordingly...thank god you didn't carry on, I feel on a deep level you knew it would have been wrong to do so...

 

i hope and pray the heart meds settle down ......oh boy, what a journey! Xxxx

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Re: February 2019 chemo starters

Just a very quick pop in before I hit the road, this weekend is mental busy.

 

Just wanted to extend further big squishy hugs to Marie and Daisydi.  Love you both and I hope things look better soon.  

 

And Edinbird....  you probably got the cannula idea from me as I had one at my rads planning meeting.  They used it to pump some kind of tracker dye through my system for the CT scan.  Maybe that isn't standard?

 

Catch up with you all properly on Monday x

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Re: February 2019 chemo starters

Morning everyone,

 

Just popping in to give our MBJ a big hug. I'm cross on your behalf. 😡

 

Thank goodness you didn't have any more chemo. 

 

Praying for no more side effects for you xx

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Re: February 2019 chemo starters

Hi MBJ

 

Just  a quick one. When I told my husband about your heart problem the first thing he asked was "Was that due to the chemo?" Switched on or what?! I think I'd be more than a bit angry😤😤. 

I feel genuinely upset for you if the cause is down to some medic being careless about how much chemo an individual can be given. 

 

Time for bed 🛏.  xxxx

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Re: February 2019 chemo starters

Hello Everyone

I had a telephone conversation with my cardiologist this afternoon. He explained a bit more to me I have an insufficient left ventricle that is only pumping 30% of the blood out into the Atrium. He said it was definitely caused by the chemotherapy. My God thank Goodness I did not have anymore. To think how I have agonised over not carrying on feeling like a coward and a failure. But my body was really not able to take it. Strangely I was talking to the nurse in the Tenovus caravan when I had my bone infusion two weeks ago. She asked me about the chemo and I told her my story. She then asked me who my oncologist was so I told her. You never guess what she said to me oh yes he does like to pump up the doses and give everyone a good wack!!!

So God knows how much he gave me, he even weighed me with my boots on. 

I hope this does not scare all of you, as you are all doing so well and most of you are through the chemo stage. I really struggled when they told me I needed chemo and almost did not do it. Indeed my specialist nurse (think I have written this before) said to me "Dr James stop reading and let us look after you" well they did a mighty fine job of that.

Sorry girls I am just feeling a bit angry tonight and I am sure they were doing what they thought was best for me. Also if I had refused chemo then I would have been acting against medical advice and we all know we need to feel we have done everything we can to survive for our loved ones sake as well as our own.

I am seeing the cardiologist in two weeks and started my medication yesterday and have already got the cough that is a side effect. Just call me side effect Marie.

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Re: February 2019 chemo starters

Beach walk sounds good to me Daisydi.

Back at work today and I did a full day ( 8 am till 4.45) . I also sat down with a colleague and drew up a timetable so that we all know when I will be in and for how long ( as opposed to turning up and going on until I have had enough which was vague and not such a great idea - although with good intentions behind it).

So Friday will be my full day and all other days are Half or Quarter days . 

One day will start at lunchtime. So I am feeling much happier about this phasing in business. As I do have a tendency to keep going and then getting tired and cross. Having the day off yesterday started well Hospital review etc and ended up with me losing my temper with H1 and throwing a glass of water over him as he was cooking. It all started when the kids had got back from school, I got back from my relaxing pedicure and then H1 and K2 got into a play fight tussle which ended up with both of them getting upset and hurt 😱

I was so cross with both of them ( and myself) that I left the house and walked around the park and picked blackberries. I returned 2,hours later to a quiet home with fed kids. 

I just did the ironing and went to bed at 10pm.

We are all okay today so I am not sure why all hell broke loose yesterday.

My daughter thought the whole thing was funny and she got told off by me for finding it funny. 

Today the kids got told that they both have to help with the chores and a duty rota has gone up. We used to have one , then they said they knew what they had to do and then it slowly fizzled out to H1 and myself doing most of it. Which is not on.

K2 is not allowed to play computer games for more than 1 hour on week days, so he has a long face.

 The joys of it all .🤪🤪🤪🤪

 

 

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Re: February 2019 chemo starters

Thanks Daisy - you just have a combination of everything 😕 hopefully the beach walk has helped. I have no idea what the sleeping pills were I got second chemo because they were rubbish so I just threw the box out!

 

Hmm I had thought I needed a cannula bonus if not!

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Re: February 2019 chemo starters

Hi Edinbird, I have got some lorazepan or something which I was prescribed at the beginning after surgery.  I may take half tonight and see what happens ...  I am also having sweats,sore legs and hips and sore boob where I have some new blisters underneath.  Nothing major but just annoying.  I did loads of hoovering yesterday and cut the grass the day before and my arm really hurts too so I am taking painkillers before bed.  Regarding the CT planning I dont think you need a cannula, I'm sure I didnt have one

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Re: February 2019 chemo starters

Aw Daisy you know I know all about the sleep woes... I’m pleased to say that I’m over a week free from the sleeping pills! Maybe it was learning the cancer was all gone, maybe it was finally being able to take something for my sweats (which I feel have reduced but not gone away by any means). I feel a lot better although the last couple of days I have struggled a bit to get up. My legs have been aching on and off. Have you done the tire yourself out that my oncologist suggested? Can you push an extra dog walk and really knacker yourself out? The meds that Marlyn said about might help, he did say that I might need emergency hard stuff just to get one good night under my belt and break the cycle but I seem to be getting better.

 

So I have my CT planning on Monday! Glad I said I could take any last minute cancellation. Hopefully that means I start by the end of the week after. Feeling happy about that. And the appointment for the scan is at 4.30 so I have all day to drink for the cannula! 😁

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Re: February 2019 chemo starters

Thanks girls for your messages of support.   Trouble is I dont know who to phone as I dont seem to be under anyone's care but I will leave it till Monday and if things dont improve I will get on to BC team.  I dont really want to go down the route of taking even more drugs.  I have never been a tablet taker as they always make me feel rotten in one way or another.   My friend who had bc last year and is on Anastrazole says she is always tired but at the weekend she can sleep for 12 hours, if only .....  I have just had a really long walk and even went on the beach but it nearly killed me walking on the soft sand but I did it and the dogs really enjoyed splashing in the sea.  Hopefully that will do the trick for tonight x

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Re: February 2019 chemo starters

Hi daisydi 

 

I understand exactly how you feel having been deprived of sleep after my last two chemo sessions and enduring the effects of fatigue.. It makes you feel absolutely miserable, almost to the point of depression, and you're in pain on top of that. Can you speak to your doctor or is there a breast care nurse, support worker or similar that you can speak to? The meds Marlyn has suggested may help. It's trying to establish if lack of sleep is leading to other problems or other problems are leading to a lack of sleep. You've endured so much during this year but you will get through this. As hubby says 'Another wet nappy in the cycle of life'. 

Take care. Sending you special hugs 💕💕💞💝💝❤❤ 

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Re: February 2019 chemo starters

Daisy, we are all behind you, not that helps when your tired and everything hurts. Hopefully you can get to see your GP. Big hugs 💕💕

 

Well I’m in the car on the way to Portsmouth. Hopefully the carpal tunnel will behave itself to allow me to sleep a little tonight( I can live in hope) 

 

I’m keeping updated with everyone, replying is a little difficult due to my hands xx 

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Re: February 2019 chemo starters

Daisydi, yes sweetheart, it sounds like you need some extra help with sleep if it’s making you feel so down. Not sleeping has such a detrimental effect on everything else in life, I’m sure if you can get a few good sleeps in, the world will seem much better. Please speak to your gp.

I wish I could come and give you a cuddle. Xxx

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Re: February 2019 chemo starters

Oh daisy, sleep deprivation is just horrible, you get to the point where you're dreading going to bed, it sets off a cycle of stress and anxiety....I wonder if your doctor would prescribe some amitriptyline , it's a mild antidepressant but aides sleep, almost all my residents are on it and my mother in law swears by it, why not ask the receptionist for a telephone consultation? Whenever I ask I get a call back on the same day, worth trying if you already haven't? Xxxxx

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Re: February 2019 chemo starters

Morning!  I am still feeling so miserable as yet again I have no sleep.  I dont think I can do this ...

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Re: February 2019 chemo starters

Yes, nettienoo...chase it up, and use that peed off tone too.....I had op in January and had a review in July ....I'm so thankful that my care team are on top of everything, I used to get upset at all the NHS letters plopping through my letter box...with various appointments...but much rather that than the added worry of chasing things up myself.

I have already got my appointment for my first mammogram in January 2020....

 

Sounds like we all need some TLC, what a rough old ride....love you all xxxx

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Re: February 2019 chemo starters

Hugs and love for all this morning needed.

Bit barryed off myself as I’ve realised that back in January when I last saw the surgeon, I was told I needed to be seen for a follow up from my op in 6 months. It’s now September and have had no appt. also I’m probably due a mammogram soon as was diagnosed last October but have heard nothing. Bearing in mind I only had a mammogram last year because I chased it up (they had dropped me off the recall list by mistake!!!!), thank god I did, and I’m pretty sure I have capsular constriction going on in the reconstructed boob, I’m fuming that yet again I appear to have been “forgotten”. Not a happy bunny. I will be making phone calls later and just hope I can keep “the edge” out of my voice. 🤬. 

On a positive note, I’m going out this evening with friends and really looking forward to it. Drinks and a curry. 😀. I hope everyone manages to have some fun this weekend, even if it’s just curling up on a sofa with a gin! 

Ps. My son is back from working in Gulf of Mexico as he still hasn’t been able to move into the apt in Bristol yet. It’s lovely to have him here. Xxx

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Re: February 2019 chemo starters

Hi everyone 

 

Well on a positive note I feel a little more awake this morning so fingers crossed🤞🤞 the fatigue is slowly lifting. Plan to finish Tesco (on-line) shop and walk Dibley this morning then it's off for PICC care this afternoon. 

 

I feel so blessed that we have each other to help get us through this journey that none of us ever wanted to be on or even contemplated being on.

 

Love to each and every one of you ❤❤❤❤.

 

Susie B xxx 

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Re: February 2019 chemo starters

Hi MBJ

 

My thoughts are with you. Gentle (virtual) hugs coming your way ❤❤❤❤❤.

 

Susie B xx

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Re: February 2019 chemo starters

Sarah, I’m having the injections, not sure about side effects, think possibly the hot flushes but they have continued since chemo and aches and pains but again not stopped since chemo. My main problem was the bleed and bruising last time, and boy do they hurt. I had my first 2 at the hospital, next one a gp had to stress them it needs to be done every 4 weeks without fail, so have an appointment. I’m not 100% they will have the injections ready for me, we will see on the 16th.

 

The nurse got back to me I have to stop taking the  exemestane, and I will get an appointment with a specialist nurse to see what they can replace it with within the week.  2 hours later I got a call back to say your seeing your oncologist on the 26th so you won’t see anyone until then. So I queried about not taking anything for 3 weeks and she said that will be fine, then mentioned the carpel tunnel may not stop😩😩😩😩

 

Edinbird, I had rads in the same place, I only had 15 ( think as had mastectomy) I ended up with some redness and sore bits but the cream they gave me worked wonders. 

 

Daisy, rant all the way that’s what we’re here for. 

 

Got to go now ladies as fingers have gone numb and arm aches, do hope this carpel tunnel does one !!!!! 

 

 

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Re: February 2019 chemo starters

Hi everyone 

 

I think we're all in need of a group hug ❤❤❤❤❤❤❤❤❤👩‍👧‍👧👩‍👧‍👧👩‍👧‍👧👩‍👧‍👧👩‍👧‍👧 as some of us seem pretty fed up, peed off, angry, frustrated, of low mood, you name it, we're feeling it☹☹☹😩😩.

Mine's only a minor gripe, unlike some of you, but hubby told me tonight he would have to cancel the leave he booked off for our wedding anniversary. It doesn't seem much but after the year we've had I was looking forward to a bit of 'us time' and I know he really needs some time off as he is exhausted too.  I know he's worried about me and hates to see me having chemo and stuff. He never really switches off from work either. I even asked him to play the 'cancer card' and for once was actually serous about it.     

 

Maybe tomorrow will seem a little better 🤞🤞🤞🤞🤞🤞. 

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Re: February 2019 chemo starters

Try not to stress.  It really doesn't help.

 

Easier said than done, I know.

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Re: February 2019 chemo starters

Sarah at least you are getting zolendric acid which takes care of  your bones and also helps prevent bone mets.  The way I am feeling at the moment I am so stressed I'll probably grow another tumour before they get to sort me out!

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Re: February 2019 chemo starters

You rant away!

 

I've never had any kind of scans.  Bone or otherwise.  I don't get why some people get scans and some don't.  

 

I'm fed up too.  Let's all be fed up together.

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Re: February 2019 chemo starters

Sarah its so infuriating isn't it when the plan changes.  I've been taking my Anastrazole for a month now and I am so peed off that no-one is bothering to monitor me, check my bones, give me zolendric acid etc.  I have had zero support from anyone, have no follow ups and just being left to get on with it.  I am furious that I wont have a baseline scan to check the state of my bones before they get ruined.  Ive got 2 broken teeth too where the fillings fell out and the bits of teeth around them have broken.  They dont bother me either and I would rather leave them alone but I doubt if anyone will bother about them. I am also furious that my GP surgery sat on a letter written in April stating that I should be prescribed hormones when chemo finished.  Nobody bothered to tell me.  I am so angry at the moment and I hate everyone.  Cant visit my mum as I cant stand the excuses that keep being given about her being left in her room alone, have had no contact from the manager about a meeting.   And now the treatment is finished I am supposed to feel back to normal.  Yeh right!  Sorry rant over!

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Re: February 2019 chemo starters

6 monthly checks- not monthly 🤪

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Re: February 2019 chemo starters

Hi Edinbird,

 I had exactly the same as Daisydi re. rads. 

Apart from a red blotch ( that will go away - Doctor said so today in my review) right on my collar bone, every thing was fine . No problems with swallowing and even the fatigue wasn’t as bad as I was expecting.

Compared to chemo , I would have rads any day!

 I am still using my R2 lotion (am and pm) and my boob is fine.

The R1 is basically a cooling gel so if you don’t get it I would say that aloe Vera gel applied straight after radiation will work just as well . I enjoyed using both R1/R2 products .Still have plenty so still using them.

End of treatment review went well today. I will get called back in December for a mammogram and then it’s monthly checks for 5 years.

Doc. said I was very lucky to have an oestrogen driven ‘lazy’ cancer. 

Tamoxifen is now blocking the oestrogen so basically just ‘go and enjoy your life ‘ was the message given.

Re. Diet I was told I could eat everything in moderation. They were very pro the daily walking and also weight bearing exercises to maintain bone health.

Back in school tomorrow and looking forward to it.

Hugs to all, deep breath.

Rosina

 

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Re: February 2019 chemo starters

Hi all

 

Edinbird I had the same rads, 3 weeks all over (right up to the neck, never had any problems with swallowing), and then a week of boosts to the tumour site.

 

I just came out of my onco appt and he asked me how I got on with rads and I said to him that it was a doddle.  So here's hoping it's a doddle for you (and Susie) too x

 

Bit deflated after my appt actually.  On the plus side he gave everything a good poke and prod and is happy at how I'm healing up / losing weight / generally looking healthy.

 

But after being told before that my bloods indicated that I am post menopausal, hence anastrazole only (which I wasn't too worried about), he has now decided that the bloods weren't 100 percent definitive, and that he would rather treat me as peri menopausal, which means monthly zoladex implant injections for 3 to 4 years, as well as the anastrazole.

 

Not only a pain in the butt as it has to be done at the GP (and my GP is literally impossible to get an appointment at, I've not managed to see them for over 2 years despite occasionally trying.  Even when I first found my lump I had to go to a different surgery to see a GP to get referred because my GP wouldn't see me), but also the side effects sound pretty nasty.  Are any of the rest of us on zoladex?  I think maybe Sonia may have mentioned it before?  

 

Also, apparently I have bloods this Monday and my first zoledronic acid infusion Tuesday.  Which was the first I'd heard of it.  Haven't had a call or a letter.  And I have some important work meetings Tuesday morning which I'm now going to have to change.

 

Plus he wants me to go back to the dentist AGAIN as I've seen two, one who said I had to have 2 old dead teeth at the back of my mouth taken out before zoledronic (they have been dead for 10 years and I've had zero bother from them), the other who said that taking them out could cause more bother than leaving them be, so I should leave them be.  Now the doc wants a third opinion but I'm running out of dentists!!!  I really don't want them taken out unless it is 100 percent necessary so I think I might just insist.  But of course he has now scared me with tales of "necrotic jaw disease" or words to that effect and I don't know who to believe....

 

All in all, a big palaver.

 

Think im going to go to bed, watch a couple of episodes of Lost and not think about it all for a bit....

 

 

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Re: February 2019 chemo starters

Hi Edinbird 

 

A very quick pop in. My radiotherapy is going to be the same as your's. Thanks for the heads up about possible problems with swallowing. I think I'll be prescribed cream too, again not R1 and R2.  

 

Susie B xx

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Re: February 2019 chemo starters

Hi Edinbird all systems go then.  I had 20, 5 boosts and 15 to breast and collar bone.  I had no issues with my throat but had/still have a nasty radiation burn by my neck which is caused when you put arms up and a crease forms in the skin and the radiation bounces around as it doesn't know where to go but then I have a big neck and extra chin so you'll probably be fine.  You're spoilt up there getting creams given.  I spent a fortune on creams and gel.

Glad you got your boiler fixed.  I must get mine serviced before winter sets in. 

Hope everyone else ok x

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Re: February 2019 chemo starters

Hi all xx

 

Hope everyone is coping today. Had my radiotherapy registrar appointment, signed the consent forms so got to wait for the scan now. Around 2 weeks although I said I was up for a last minute cancellation since I can just walk round there in 10 mins! So hopefully I get bumped up. Having 20 which includes 4 boosts, breast and collar bone/neck area. Did anyone’s go that high? They said I could have trouble swallowing when it catches my trachea. Wonderful. I showed her my range of movement and she thinks I’ll be fine with the scan.

 

So let my boss know and want to just crack on now. Won’t get any choice in time of day as those who have a way to travel get that, but it’s all between 9 and 5 so nothing is going to be too much trouble. I get given two creams too! Not the R1 and R2, a steroid and emollient. Will need to buy some gentle shower gel though as we just have weird and wonderful at the moment.

 

I’ve asked for a referral to occ health to see if I can keep reduced hours during rads rather than going off sick but will see what they say. A colleague has been asked to help me do my new job when I start back which is great but I feel sorry for her since she’s one of the other managers and didn’t get the job. She assures me she’s getting compensated for it but I still feel a bit awkward about it. At least I’m getting the support.

 

The boiler is working again the man returned and the system was completely full of air. It was fine when he had done that and the hot water is on now so fingers crossed it stays that way. Just want a good night’s sleep now. Lots of love to everyone but especially Marie, I hope the new meds aren’t causing any issues xx

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Re: February 2019 chemo starters

Oh Marie you sound utterly defeated and I don't blame you Smiley Sad

 

I just want to get in the car and drive to Wales and give you the biggest (gentle) squish!!

 

Really, really hope this turns out to be less scary and more manageable than it currently seems xx  and bugger about the cruise Smiley Sad Smiley Sad Smiley Sad  There will be other cruises (I know that doesn't help AT ALL.  I'm still bitter about missing my American trip in March!)

 

So much love to you xxx

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MBJ
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Re: February 2019 chemo starters

Hello Girls

Thank you for all of your kind thoughts. Yes the consultant (who I have not seen yet) said I could not go on my cruise. Just taken my new medication this morning. I think I am still in shock to be honest. Just when I was beginning to feel my husband and I could have a life I feel devastated that I can't see that anymore. I know I have to find a way to deal with this and I will well I will have to doing have a choice. How many bloody diseases does one woman need!

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Re: February 2019 chemo starters

MBJ so sorry to hear about your news I can understand how shocking the news and the way it was delivered was but bear in mind just like cancer heart failure to can be treated, depending on the stages if treated properly,  My father in law has been in heart failure for year's and many of the people I have looked after were also in heart failure and still do ok with the right treatment and support. I know you're probably sick of people giving their 2 penith. Have they actually said that you can't GO on your cruise?? because if they haven't maybe you should and just make sure you've update your insurance, finger's crossed that it isn't actually as bad as it sounds, sending you a hug xxx

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Re: February 2019 chemo starters

Marie I have now had time to digest your news.  Whereabouts are you going on your cruise?  When I went on one some years ago there was a fabulous medical team and doctor on board.  As Rosina's H1 says probably many people on the cruise will have health issues of one kind or another and if there is no flying involved I would be inclined to go as you will have medication and you are not seeing cardiologist for a couple of weeks.  I completely understand your hesitation though.  Hopefully they will get you sorted with some pills.  Thinking of you x

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Re: February 2019 chemo starters

MJB, 

That's S H I T !!!  after all that you've gone through. hopefully the medication will keep it under control.

Like the others said we are all here for you. Sending cyber hugs xx

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Re: February 2019 chemo starters

Hi MBJ ,

I have read all the other posts and now feel able to quote H1 further .

He is very direct in his mode of speech :

‘1) Half the people on the cruise will be on meds for heart failure.’

’2) Cardiologists are exceptionally good at talking to their patients in a way that totally terrifies them’.

He actually was quite irritated when he was talking to me. I think he sees a lot of patients that have come to him in a state over a diagnosis that has been given to them totally insensitively.

I guess in his line of work as a dentist,  he has to be informed of health issues and it seems that there are quite a few practitioners out there who really don’t have a clue as to how to give feedback with freaking out the patient.

Rosina

 

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Re: February 2019 chemo starters

Dear MBJ,

 

How much more bad news can one person take? I am so sorry and totally understand that you will still be in shock. We are all here for you every step of the way.

 

Big hugs,

 

Sar xxx

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Re: February 2019 chemo starters

Hi ladies.  I've just got on the train at Paddington for my journey home and popped on the forum for a quick catch up.

 

Marie I'm so sorry to read your news Smiley Sad

 

All I can hope is that, if they thought it was appropriate to give you this news over the phone, and not call you in to talk in person for a fortnight, that you must be at the less serious end of the spectrum of heart failure.

 

I had a quick google (which I'm sure you have done yourself!) and found something about stages, from 1 to 4, with the seriousness of the condition raising through the stages.  Did they tell you what stage you are?

 

Along with the other ladies, I would be tempted to say sod it and go on the cruise, but that is entirely up to your own comfort zone.  I know all this started with a heart issue on your last holiday so I can imagine that might put you off a little.

 

Hopefully this can all be kept under control with medication, that isn't too side effecty.

 

I've had to take blood pressure medication every day for the last 10 years or so, and will have to continue taking it for ever.  But it is genuinely no bother.  Fingers crossed your heart meds will fall in the same camp.

 

Hope you get some official reassurance soon xx

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Re: February 2019 chemo starters

I was coming on to rant that the boiler has promptly broken again but I couldn’t care less now. Sending the biggest hugs to Wales, surely there is someone you can speak to sooner than two weeks? Us of course but someone who can give you more information. You’re getting drugs straight away they’re not leaving you with nothing. If there is anything whatsoever we can do just let us know 💕

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Re: February 2019 chemo starters

Marie, what a shock for you darling and how callous for them not to tell you in person. I’m sure a chat with the cardiologist will make you feel less terrified as Marlyn has said. There will be a plan of action put in place and you will cope although I know you aren’t thinking that way at the moment. We all love you and are here for you. Xxxx

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Re: February 2019 chemo starters

Hi MBJ

 

I'm with H1, go on that cruise🚢. You could have already been on your way and missed that phone call. My friend's brother, around 65 yrs old, was diagnosed with heart failure years ago and still travels to France every year.

xxxx

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Re: February 2019 chemo starters

Mjb...utter crap news my love, as if you haven't had enough already. I'm hoping a proper chat with the cardiologist will settle things for you....please keep us updated? We're all here for you, you can't feel it but I'm holding your hand love xxxxx

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Re: February 2019 chemo starters

Oh MBJ, I can't even begin to tell you how sorry I am to hear your news. To be told over the phone as well, words fail me. 

Stay strong. 💪💪💪❤❤❤❤❤❤❤❤

 

Susie xxxxx 

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Re: February 2019 chemo starters

Sending you hugs MBJ.

Rosina 🌸🌸🌸

PS H1 on this end says ‘go on that cruise’ . There are drugs for heart failure.