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Anyone starting Chemo in December 2018?

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi all - my bladder is too close to my eyes today too - I love that expression and kept thinking it all day 🤗 this gift that keeps giving has given me frequent, urgent dashes to the loo 💩 all day, plus the rain and not able to go for a walk ‘cos my legs are so wobbly - I have felt so fed up 🥴 I hope everyone has a good weekend. 

Hugs to all 🤗🤗

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Re: w, Re: Anyone starting Chemo in December 2018?

Well Sunnydaze, that’s my Friday night anthem sorted...anyone else have this in their brain now 🤪 🤣🤣

love it!! 

G x 

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Re: w, Re: Anyone starting Chemo in December 2018?

It sounds like you have been very brave re; your undiagnosed frozen shoulder MaryKamille. I hope you get help from a good physio and that it starts to improve soon. 

Thank you for the info re; late on set of side effects for radiotherapy. I’ve only had two sessions so far and my breast and arm feel tender. I hope everything holds up ok.

Its funny what difference a day makes. Yesterday I was in tears on the radiotherapy table, but today I was killing my self laughing. As i was laying on the table music started to play, in my ears “I’m horny, horny, horny, horny”🤣🤣🤣 it was so funny i just had to shout back, “No I’m not.”

The radiologist laughed too. It was a funny moment.

Its still rubbish having radiotherapy though. I only had to wait 20 minutes today though. #2down.

I decided to treat myself in Next afterwards and bought myself a linen dress and top for my holiday in Cornwall 2 days after rads finishes! The radiologist said I need to be covered up. Many of my summer clothes have low neck lines. Now I’m Post BC ready, high neck lines to stop me burning in the sun ( it will probably rain all week) and natural materials to help with the hot flushes 🤣🤣🤣. The joys...

Have a lovely weekend everyone xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Thanks for the comments MaryKamille, such a shame about your arm, hope the physio helps. That info about being worse after two weeks is interesting, I am working around my appointments and have a busy week next week once I finish but might have to keep my diary clear after that. So just when you think it's all over it might not be, great!  I had a quick look on the radiotherapy threads and some woman have an horrific time with their skin.

 

Now you can count down to that holiday rather than the the next treatment regime. Yay! 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Kip

 

Thanks for the info. I’m at the clinic on Monday so will see if they have any more information. x

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Re: w, Re: Anyone starting Chemo in December 2018?

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi DrummersWidow,

 

Sounds like you have caught the lymphodema early too, that's what I was told, when exercising and carrying heavy stuff etc so hopefully neither us will have to wear the old sleeve permanently, does act as a good reminder of what we've been through (to others especially).  Gets me out of the cutting the lawn hee hee.  I have a set of exercises for lymphodema, not dissimilar to the post op ones,  stroking the arm starting from the top and working downwards in upward strokes to encourage the fluid to move.   Hold on.. I'll take a photo if I can and post it on there...much easier than describing it to you..

Kip

x

IMG_20190607_104151.jpg

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi LB2 (and KitKat18)

 

I have also been on Anastrozole - for 2 weeks now. Have had very mild hot flushes but nothing else I can pinpoint. Maybe we are all going to be lucky on this one!

 

I saw a doctor for a medical review yesterday before my Rad treatment. Thank you for your comments on that issue, LB2. The doctor asked me questions and to do a couple of movements (one very painful) and told me I had capsulitis (frozen shoulder), so I am not being a wimp! You'd think the Radiologists might have realised that I had developed that condition?

 

The doctor said to see my physio as soon as possible to help me and, even if there is a delay after finishing Rads, (I'm on my 11th today, only 4 more to go next week, and my physio is away at the moment) that I must pursue it. It's expensive as private, but Julia, physio, did help me a lot with Sciatica before all this C stuff.

 

Apart from shoulder pain, Rads have not been too bad.I have soreness where there is swelling in two places which doctor pointed out. I am red but not blistered or open sores - they warned me to watch out for tiny ones which would need a different cream if they occur - so doing OK so far.

 

Doctor said 2 weeks after Rads is when side effects really take hold - as treatment is still working. Also, that SEs can last for 2 months. Then she gave me a card which has phone number etc to contact for problems, but it has a note at bottom,  I noticed later, to say that the phone no only applies for one month after finishing Rads. Then if you have problems - see your GP!

 

We are getting near the end of treatments, however, and we have just booked a holiday for early July around our wedding anniversary. Something to look forward to. And I have booked in for a Look Good Feel Better session with Macmillan services at the hospital for 18th July just after Rads finish. Maybe they can help me with make-up to reduce the ravages in my appearance! Also, seeing dietician this month.

 

Best wishes to everyone and hope we are ALL getting near the end of treatments!  xxx

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Sunnydaze. That’s exactly how I was on my first rads. Did actually say I wonder what I’m doing here! 

 

I have been fortunate not to wait too long at my appointments. I’m having number 14 tomorrow and the time does go quickly xxxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi G,

Glad you’ve resurfaced for a little while. I hope you’re feeling ok and the se’s are beginning to ease up for you.

It’s a tough journey and you are doing amazingly well, having endured longer  chemo cycles. It’s a blessing that you don’t need Rads G. ❤️

I know LB has also had to have additional cycles and a rough ride in hospital, but I hope too that you’re doing ok LB.

Dikat, I think I rang up for my results. I couldn’t wait for my meeting. I’d already waited 3 weeks. 

Hugs to all.

xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hey lovelies, I am still in chemo SEs this week so as usual non existent on here although I have had a catch up today to check in on you all.  Big hugs for those having some tough moments, especially those having them on the table as I think vulnerability is at its peak at these times.  When I look back on all this so far, the irony is it’s the MRI scan before my ops which was just there to check stuff and my port being inserted that are the two moments I could have just run away from despite them being minor in themselves.  The real hard parts of hearing news, agreeing a treatment plan, ops, chemo being administered etc were strangely easier to face in the moment, strange how your mind processes and manages isn’t it.  

 

Also I need to wade in on one other brilliant extract from the last few posts....I think having your bladder too close to your eyes is a very brave anatomy choice and one I am fully embracing and we should all be doing for our current and future well being, well done us 🧡

 

big hugs G 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi ladies 

LB2 and Drummerswidow, yay only 2 more rads to go💪

Glad your lymphoedema isn’t too bad Drummerswidow.

Sunnydaze, Good on you for embracing the bald look. Sorry you haven’t had a very good experience waiting around today and feeling like a piece of meat on a slab. This part will soon be over. 

Kitkat18, I hope your results come through soon. I rang my BCN today to ask if she was allowed to give me mine over the phone if they come through before my appointment next Wednesday. She said she would but they still haven’t come through as yet. 

Stuck at 14, sorry you have felt so rubbish during rads, it does sound degrading but you have done really well and not got long to go now.

Mars, hello and good luck with your treatment. It’s really useful to read the forums a few months ahead, often find the answers to things and get an idea of what to expect.

Hope I haven’t missed anyone, sending love and hugs to all 💕🤗

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Re: w, Re: Anyone starting Chemo in December 2018?

I thought of you today SA14 and totally understood why you felt so low...Yes, for all of the reasons you outline. I felt/feel the same.

The staff are  friendly enough and business like, prodding us along whilst our hearts are breaking inside...That table is a lonely place and they don’t really get it and why should they? 

SDxx

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Re: w, Re: Anyone starting Chemo in December 2018?

I thought of you today SA14 and totally understood why you felt so low...Yes, for all of the reasons you outline. I felt/feel the same.

The staff are  friendly enough and business like, prodding is along whilst our hearts are breaking. That table is a lonely place and they don’t really get it and why should they? 

SDxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Sunnydaze you've just made me realise why I've felt so low and unhappy during rads- it's the lying on the bed, boob out, being poked and pictured and drawn on- all those original horrors. It will fly by though- I'm half way through now. 

X

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Re: w, Re: Anyone starting Chemo in December 2018?

I started rads today. I had to wait an hour and a half before I was seen. Hope it’s not as bad tomorrow. 

I ended up with leaking bladder too close to my eyes syndrome whilst I was lying on the rads table. I’ve had enough of this treatment before it’s even started. It just brings the full horror back to me and I want to move on ( even if I will metaphorically be limping forward and glancing backwards over my shoulder  😓) but hey ho, it has to be done and we’ve got to give ourselves the best fighting chance.

So onwards we shall go.

Hugs to all

xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi LB2 and Kip.

 

LB2. My skin is not too bad. Having a review appointment tomorrow. It’s itchy and red near the node at the base of my neck.  I was told to be extra vigilant with sun cream there.

 

Kip.  The only exercises I have been given is the post op ones which I have been doing cos of the rads.  I don’t think the Lymphoedema is too bad but she’s being cautious. The Lymphoedema nurse told me to wear my sleeve when I’m working and not to carry heavy bags. She said it would do its job and remind my clients I haven’t been well lol! I have seen those other sleeves but can’t remember which site. I’ll have a look tonight.

 

2 more rads to go! 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi DrummersWidow,

 

I'm not sure if I have told you about my lymphodema before (I still have the dodgy memory 8 months after chemo I am afraid).   Anyway, I'll tell you again, ignore me if I am repeating myself.  I have very slight lymphodema in my operated side.  Its not noticeable particularly but I was suffering with cording and was told to refer myself to the lympho clinic.  They measured it and said it was slightly larger.  I have a sleeve to wear, but only need to wear it when exercising or doing strenuous stuff or walking so I wear it around the house and when gardening etc and then don't have to wear it if I'm going out.  To begin with I was hateful of the sleeve, just another reminder but actually I don't really think about it now. I pop it on and quickly get used to it being on and can't feel it, have actually gone out and realised I've still got it on.   I think it has really helped it developing any further (I have a check up in a week or so).  Have they given you some exercises to do?  If they have, keep doing them, twice a day, they only take a few minutes and I think they really help.  I have noticed that my shoulder and neck on the op side get very stiff if I don't keep up with the post op exercises too, so they all help.   On a plus side.. I have seen online you can get some very pretty sleeves, ones that look like tattoo sleeves and flowers butterflies etc.. so if you are feeling adventurous?   I have a friend who has Lymphodema too and she wears a black one simply because she felt, if she had to wear it she may as well make it a statement.. she says she sees it as a badge of honour for coming through all this crap!

 

To all you other December ladies - glad to hear you are getting through the treatments and sorry to hear some of you have the "bladder to near to the eyes" syndrome.. me too, par for the course I think, its tough some days but I have more good days now too... and I also HATE those adverts...enough with the reminders!!

 

Take care all

Kip

xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi LB2, I’ve only been on it for a month and yes the most noticeable se is hot flushes at night. However I still have some neuropathy in fingers and feet which seems to increase in the evening since taking it but not sure if that’s the drugs, no joint pains so far x

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Re: w, Re: Anyone starting Chemo in December 2018?

Wow lots to catch-up on yesterday. So sorry to hear of your radiotherapy experience MaryKamile, glad they got sorted the next time, they should treat you like a VIP now. And shame you have developed Lymophoedema Drummerswidow, hope the sleeve does what it is supposed to do. How is your skin holding up now you are near the end of rads? I have just 2 treatments to go, my skin is still OK, saw the radiotherapy nurse yesterday and she gave me Hydrogel to use if the skins gets weepy and cold pads to use if it get uncomfortable. Apparently this can all develop in the two weeks after treatment ends, these treatments just keep on giving!

 

KitKat18 - how long have you been on Anastrozole? I have only been taking it 3 weeks and trying to work out if side effects have kicked in yet. Just a few hot flushes so far.

 

For those with leaky bladder eyes I think we all feel like this, sometimes when we least expect it.  We can't stay strong for 24/7 over such a long time. 

 

Onwards and upwards, we are all getting there L x 

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Re: w, Re: Anyone starting Chemo in December 2018?

Morning all.

 

Thank you for your advice. I am seeing the Lymphoedema nurse at the hospital, a lovely lady who I believe has had cancer herself.  She’s ordered me a sleeve (something to look forward to wearing in the heat), which apparently is in but at the other hospital I go to. 

 

I am there on Monday to see the surgeon so will pick up then.  Just three more rads to go! 

 

The sun is shining  here today. Hope everyone has a good dayxxx

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Re: w, Re: Anyone starting Chemo in December 2018?

oh blimey!  I've just realised I've posted on your Dec thread (which I've also been reading obviously!) and not on the May one!   Eeek - I though I was getting away with chemo fog brain, but clearly not!!!    Sorry girls.   Good to say hello to you all though!

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Re: w, Re: Anyone starting Chemo in December 2018?

Hello ladies.  I hope you don't mind me popping in, it's just that I've been reading your posts with interest and I've found them a big help as I've been able to identify with some of what you are also experiencing which has given me some comfort around all of this.

I did post on an original May thread ( not sure why there are 2 ?!) but, for some reason, I didn't then join in on this one.

Anyway, I had my first TC chemo on  24th May, and if bloods are OK, the next one is Friday 14th.

My biggest problem at the moment is I can't sleep.  If I manage to get 4 hours in I'm lucky and I don't know why.  Admittedly I was on steroids for 3 days, but that was at the time of the chemo, so I'd have thought it would be out of my system by now and normal sleep would return.  It's so annoying - the only good thing is I get to see the sunrise every morning!  

Some of you have mentioned getting upset out of the blue, and I too have to hold back waves of tears sometimes - totally not like me at all, it just comes from no-where when it happens.  My friends have all said that I'm so strong, but really I'm not strong, I'm just trying to get it all over and done with and at the same time doing my best not to let it completely ruin my life as I go through it all.  I tried to explain it all to a friend just before my first chemo, but then she thought she'd upset me - which she hadn't at all - and ended up apologising in case she'd caused offence!  It was at that point I then decided to let everyone think whatever they want as others will never truly understand the incredible scale of the roller coaster of emotion that starts from the day of diagnoses and continues throughout the journey.  Only people who've lived it - like you ladies, and all the others in these forums - can identify with it and truly empathise with it.  So this is why I've found some comfort in your posts - it's stuff you want to say, but can't say to people you've known for years and years, simply because they don't understand and to be honest, they don't know what to say.

I know some of you have more treatments this week, so just wanted to wish you good luck and lots of love.

xxx

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Drummerswidow, I agree, you are great on this forum. Definitely wise, reliable, compassionate  and funny. Don’t be so hard on yourself or think for a moment that everyone is doing better. I think we all struggle in different ways, but we try to support each other along the way.

Ouch, your arm sounds sore!  Kitkat has given you good advice I think, to get it seen sooner rather than later. 

Dikat, you look amazing with that crop. I wish mine was like that. I’ve been very brave these last few days though and just go out and about bald. Too hot for hats and wigs. It’s taken me a long time to feel comfortable bald, but I’ve finally got there.

Mary Kamille, it sounds like you’ve had a rough time, but I’m glad you’ve  sorted them all out at radiotherapy 💪💪💪

Stuck at 14, you are doing amazingly well dealing with young children throughout all of this. My friend had BC at 38 and she’s fit and well at 51.

We’ve got to stay positive that’s for sure.

Sunnydaze xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Drummerswidow, I love your grandmothers phrase, I’ve always struggled with leaky eyes and my bladder has been much closer to my eyes over the last few months and I bet it’s the same for everyone of us. You come across as a very wise lady and very supportive so don’t put yourself down. With regard to the lymphoedema can you refer yourself to the lymphodoema nurses - the ones at our trust say don’t wait until you are referred by the medics cos the sooner they see it the easier it is to treat. 🤗🤗x

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Dikat, love the new photo, I’m very envious of your hair, I only have the tiniest hint of some returning. I am supposed to get the results in this next week, but my bcn said yesterday there was nothing back yet and it has to go through MDT before I get the official version.

I’m sorry several of you are struggling with hot sweats, sleeplessness doesn’t help with the emotions and anxiety does it?!  Anastrozole is trying to put me into a second menopause but it’s not too bad so far🤞🏻Xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi MaryKamille 

 

sorry you are having a tough tough time with rads and positioning. I have been suffering from pins and needles and Lymphoedema is becoming apparent in my left arm😟😟. They commented today about the bruises on my arms. It’s where they are in the arm rests. Bloody uncomfortable! Glad your husband is supporting you xxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi DiKat.

 

Thank you for your kind words. I don’t feel very strong compared with you and all the others.  I keep on breaking down in tears at the moment. Bladder to near my eyes as my grandmother used to say! I’m having a lot of problem with self image at the moment but putting a brave face on it some of the time.  xxx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi maryKamille

Not surprised you had a meltdown yesterday, bet it was awful being in that position for so long.Glad they got their act together today!

I'm with you on the memory thing, hence having to reply to everyone individually. Thought I'd got away with it because I wasn't too bad during chemo, must be a delayed reaction in my case. I find it really embarrassing when I'm halfway through talking to someone and my mind goes blank, like you say in particular when trying to bring names and places to mind.....just thought literally whilst typing this, maybe it's to do with the menopause stuff that has kicked in for me.

Pleased you have your hubby who is so supportive and have found a way that suits you when dealing with family, friends. We all have to do things our own way.

Sending hugs xx

Sending hugs

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Dikat yep I am starting zoladex and letrozole on Friday- zoladex just until my ovaries are out, letrozole for 10 years but they'll have to fight me for it as I want to live a lot longer than that thank you. I'm currently googling recurrence statistical and side effects which is obviously stupid. 

 

Great photo Dikat! Xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi kitkat18

Sorry you haven't got your results either. Do you know how much longer you will have to wait? I'm really surprised you haven't been referred to Macmillan. Nice that you have been getting the complimentary manicures/pedicures and I hope your fingernails sort themselves out soon. 

Sending hugs xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Drummerswidow

I think you are an amazing strong lady. I often think of you and how difficult it must be to have to cope with all of this on your own. Really appreciate your input on the forum. Sending hugs xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Stuck at 14

Hope all went well with your rads and review. Have you now had something prescribed?

Hope the counselling is working well for you. Wise words but it's not always easy putting things into practice is it. Hopefully things will get easier for us all over time and we can enjoy being in the moment.

Sending hugs xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi all I had the scan this morning and sadly I did cough and they had to do some of it again 😟 I was so embarrassed 😞 but they were very kind 😊 I had arranged that if I needed to cough I would press the emergency ball that they place in your hand but it came out of the blue 😏 Now we have the wait for results to see if this 💩 has been worth it 🤞🤞🤞🤞

LB hugs to all 🤗🤗

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze

Hope you enjoyed your family visit and that is such an achievement with the hill walking, well done you.

Sorry to hear your BCN is so rubbish, she clearly needs to change her job. I know it must be stressful but it's bl***y stressful having cancer too.Thank goodness you have good chemo Macmillan nurses.

Sorry to hear about the girl with the secondaries, news like that is difficult to hear. Totally with you on all the ads, I cant cope with them at all....I'm sure they have increased tenfold in the last 6 months!!

I'm struggling with the menopausal stuff too. Lots of hot do's, as I describe them to my kids, in the day and night sweats...then I seem to go really cold. Struggling with the lack of sleep, struggling with my emotions which I'm not sure if they are related to the menopause stuff or BC poop or a mixture of both. Thought I would feel better about things after chemo but that doesn't seem to be the case right now. Hopefully will feel calmer tomorrow after my next reflexology session. Really looking forward to our meet up xx

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Drummerswidow, Dikat, absolutelyannie and everyone else.....


I am a bit behind on posts - today I am trying to catch up but so much of each day is taken up with hospital journeys for Rads that there isn't much left during the week.

 

I am half-way through Rads and had a meltdown yesterday. Not my usual people for my 'treatment'. I had one tall radiologist I knew, and a trainee who I didn't. The trainee disputed everything and in the end I was in so much pain in my shoulder (because of the protracted period with my arms in that tortuous position) that I said I could not take any more. By this time they were both talking in hushed voices a few feet away, and the taller one agreed to let me wriggle and wave my arms about and re-set me.  They had to take photos because my position was not right the first time anyway, so that meant longer still.

 

Fortunately, I had my 2nd skin review with another 'unknown' straight afterwards, and just burst into tears. She was great and must have sorted out something, because today I had the 'best' radiologist (the young man who usually takes charge) and another experienced female. The trainee, though there, was allowed to do very little. It all went so quickly and relatively painlessly in comparison! And I had been dreading it so much.

 

Also, my memory is definitely going. I am really aware of trawling my memory all the time for names of people and places and this is not old age! I am sure it's the drugs and rads and everything else and will it ever return to how it was?

 

As to people, I have kept most at arms length. I do emails occasionally and just keep up with various groups and activities by that. One group member made it clear in exact words that she 'doesn't do ill', not that I had communicated anything at all about BC, but someone must have passed it on....Anyway, I don't have anything to do with her.

 

Good friends have offered to visit etc. but I don't want to talk about it endlessly and they accept that I don't want to see them now but I do respond to emails. So much easier!

 

My nearest neighbours, two couples who we get on with well must guess something - as they knew I was in hospital for a fortnight - and am often on my way there now! However, as one of them also had a hospital appointment, in the early days of my own diagnosis and treatment, and told me on his return that 'at least isn't Cancer,' I just decided to say nothing. They can't talk about it with me because it has never been admitted that I have Cancer even if they guess it. By the way that's the instant reaction of most non-sufferers to the big C anyway, doom and gloom! Very depressing. Others can just give you that pitying look which means, well that's the end of you then!

 

Nice to let of steam, isn't it? My husband keeps me sane. Keeps telling me that I am still me and how proud he is of me for my bravery. Also, he said to me the other day that he admired me so much because I always made people laugh! I really try to - it's on the phone with family mainly. He notices so much!

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Jayne 1966, how are you doing, have things settled down now with the drains removed?

Dikat, I am also three weeks on and still no results!

We have Macmillan at my hospital but I have never been referred there or even stepped over the threshold. Thankfully I do have a great BCN who attends consults yet was never given a named chemo nurse as was told would happen - everywhere is so different.  However, we also have a wig shop next to the chemo unit which does complimentary manicures and pedicures so my feet are now summer ready should we get some sun. The fingernails are still another matter although their base is now beginning to show a healthier pink so hopefully one day soon I can give up wearing silk and surgical gloves so I can’t catch them cos the top two thirds are still quite loose😬xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Sunnydaze glad you had a good weekend. Sorry to hear about your BCN being, well basically a bit of b!! I know what you mean about the adverts re cancer. I was diagnosed at the beginning of October. Worst possible month!! Also sad about the lady you know who has been diagnosed with secondaries. Xxx

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Re: w, Re: Anyone starting Chemo in December 2018?

I've arrived so early for rads today- have a review too where I'm hopefully getting prescribed my hormone stuff - although the onc was quite dismissive of the immediate need last time. 

Dikat sending hugs and I hope you get results very soon. Sunnydaze that is awful about the lady you know.  I'm really sad that you had to hear about it too- it's hard not to let awful news like that affect how we feel. My counsellor said to me yesterday that if I believe my fate with cancer is already decided then so is everyone else's and we cant change it so we have to try to push it to the back of our mind and enjoy every day. I'm really struggling with thoughts of the future still. 

I have a lovely Macmillan centre near me but foolishly I havent kept up with the complimentary therapies.  I hope to get some in before I am completely finished but I know you all understand how hard it is to keep appointments that arent medical. Hugs to everyone recovering from surgery etc x  

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi everyone,

i hope you are all doing ok. I’ve been visiting family over the last few days and I also went hill walking with my husband. I managed it, but it was so tough on the old joints. I’m taking it easy today. I’ve got one of my free reflexology sessions later.

Oh KC72, thank you so much for that top wig care advice. I’ve got comfort pure on my shopping list and I already have some baby shampoo. Great tips. 😘

Everyone seems to be talking about the support services available to them.

Here is my experience;

Regarding my BCN and Macmillan services at my small local hospital, they have been virtually non existent. A poor service. I have not spoken to my BCN since she told me I would have to have chemo back in December. She has not sat in any meetings and I’m quite glad. 

She only ever contacted me when she had bad diagnosis news to Deliver. I once rang her up and she said she had to be quick because her husband was outside waiting for her in the car....Yes, dreadful I know. I barely rang her up before this....

The chemo McMillan nurses at the same hospital are lovely though. They did give me a form to fill in at the end of my session re; further assistance, but I didn’t bother filling it in because I would have had to go via the original “I’m so run off my feet BCN nurse” - she made this clear every single time she spoke to me. She probably was stressed, but that’s not what you want to hear when you are coming to terms with a diagnosis- and I’m not generally a needy person. She just gave me the basics and that was it. I have just  kept away from her. There are barely any services available anyway, so I didn’t feel I was missing out by not completing the form.

im glad Kip and Dikat have good Macmillan services at their hospitals, that’s brilliant and should be in place everywhere else too. Postcode lottery comes to mind....🤣

However, my GP has been lovely and I have been able to take advantage of 10 reflexology/massage sessions run by a local charity to support cancer patients, nothing to do with McMillan.

 

im also looking into acupuncture for my menopausal sysmptoms. The hot flushes are manageable throughout  the day, but my night sweats are horrendous and hard to deal with. Do much so that I’m going to seek help. I have read up on acupuncture for the menopause and apparently it reduces symptoms. 

 

I’m sorry so many of you are feeling at sea with your emotions. I think it’s chemo along with the emotional trauma that has done this to us. I don’t know how to manage it myself really, only other than when I feel really bad i go out and do some exercise. I had some terrible devastating news over the weekend to find out a lovely girl who I vaguely know through a friend who was diagnosed with BC the exact same day as me is now dealing with secondaries of the brain and bones 😱😓😓😓. It’s so awful and so sad. It’s really knocked me for six hearing this and it makes me so angry because this disease is so destructive.  

 

On another note, I also hate hearing all of those dreadful cancer research ads on the tv too. I think they should ban them, they are really dreadful for people with experience of cancer to have to watch. It’s an emotionally crippling and deathly disease and we don’t need reminding of these facts when we are eating our tea watching tv etc.

 

Regarding a meet up, it’s good lots of us are interested, as LB2 says it might be a good idea to set up a WhatsApp group? I think it would be fun to meet up, although I am very anxious about it too.

Have a lovely day ladies and I hope things are beginning to settle down for you Jayne. You’ve been through a massive operation so take it gently and go easy on yourself.

Hugs to all, Sunnydaze 😘😘😘

 

 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi DiKat

I'm having a lumpectomy and anc. As for chemo, if all the cancer has gone I'll probably have 2 more rounds of FEC which is what I had to start with. If that are still traces of cancer then I will have TC instead. 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi everyone it’s so interesting to read all your posts and get some insights into what is happening with your surgeries, drains and rads. I’m taking it all in for future reference. 

Had no 4 of 6 weekly sessions today - only 2 more to go then the appointment with the surgeon. Tomorrow I go for THE MRI of the breasts which will tell us how well this 💩 has worked 🤞🤞😘 I’m pleased that they will look at both as I am so worried about it coming in the other 😏 I just hope I don’t cough during the procedure 🤣 

hugs to all 🤗 LB xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Kip

It is me in my disorientated state.  Yes I do have a macmillan nurse who sits in on my consultation.  She is available I suppose for questions afterwards.  The problem with me is that it is not until afterwards the questions come to me.  I have tried writing my questions down but it is difficult to anticipate what the consultant will tell me.  

I do have a separate oncology macmillan nurse and she is really good.  I have agreed with her that because of my hearing loss I will email her.  She is fantastic and emails me back very quickly if I do have to email her. 

I am grateful for the support of these nurses and didn't mean to give the impression that they were not helping me.  Just glad Kip you clarified their role for me.  Oh God I wish I was not so disorientated.

Dikat 

That is awful about your results.  I had mine last week when I had post op review.  All the waiting around just increases our anxiety levels.  I am waiting now for appointment to another hospital for radiotherapy.   If I wasn't so disorientated I could get on with the housework!!!

Hope you will get some relaxing "me time" while you wait for results.

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Re: w, Re: Anyone starting Chemo in December 2018?

Nice that you have popped in Susie B. Not long to wait until you have surgery now then. Are you having a lumpectomy? I know you have said you will be waiting to find out if you are Her2 + or not. Is there a possibility that you might not need further chemo? 

A lot of the Macmillan services I will be accessing will be at the local hospice, not the hospital where I’m having treatment. Do you have anything like that nearby? 🤗💕

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi ladies

I've just popped in to look at posts written by those of you who have recently had surgery after chemo to get an idea of what to expect. I'm due surgery on the 14th so am not too far behind you - I'm on the ROSCO trial and only had 4 rounds of FEC.

Jayne66, you should get on fine without the drain. My surgeon doesn't use them as the body is very good at absorbing whatever our bodies produce to protect the area that has been operated on, in the same way as our bodies provide a cushion when we get a blister. If the resultant swelling becomes too uncomfortable or painful then the hospital will drain the area. Hope things calm down for you soon☺. 

DiKat like you I can't feel too much, as far as lumps go, as chemo has shrunk my Gremlim pretty well too, so I'll try not to be too concerned if lumps reappear after surgery. Thanks too for popping in and updating us on your progress and giving us tips. Three of us are having surgery after chemo so keep the updates coming.

On the subject of Macmillan nurses there is always a bc nurse present during consultations at our hospital Yeovil. I'm slightly different as I have a trials nurse present instead. We don't have access to many of the other services as it is only a small unit within a relatively small hospital. I can't fault them at all.

Wishing you all the best Susie B xx 

 

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Re: w, Re: Anyone starting Chemo in December 2018?

Hospital have rung and said my results still not back from having surgery. Tomorrow’s appointment cancelled and been made for the following Wednesday. Know it can’t be helped but feeling frustrated 😞

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi Kip

Yes I’ve been lucky too. My experiences with Macmillan are almost identical to yours. Yes, it is a shame these things aren’t standard. 🤗💕

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Re: w, Re: Anyone starting Chemo in December 2018?

sorry ladies meant to add...

Absolutelyannie, LB2, Ditkat - was interesting to read about the differences you have all found with the support from MacMillan and your nurses etc.  At Ipswich Hospital we are lucky to have a Macmillan centre within the oncology area and they offer all sorts of support and help, free therapies (massage, Reki, reflexology and counselling) and have lots of information on all sorts of activies and groups to join: sports, arts/crafts, reading, knitting circles etc.  Its just a shame this isn't standard around the country isn't it.  When I took part in the Hope course (similar to Moving On) we had a speaker come in who talked about all the different activities going on in the area for cancer patients and that was impressive, but you never know about these things unless someone points you in the right direction do you.

I was stunned to hear your experience of the macmillan nurses in your appointments too, I always have a Breast Care Nurse in my appts (not always my designated one but usually is) and she always sits quietly whilst the consultant does his bit then he leaves and she sits with us and goes through everything again and we can ask questions etc.  She's been there everytime within the Breast Clinic and with Oncology and I also have an Oncology Specialist Nurse too.  I must be very lucky, just so annoyed that not everyone gets this.. its the least we should expect during this nightmare. 

Kip

xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Hi all,

Just wanted to let you know I too had a lumpy hardness after my MX and my ANC.   I asked the Breast Nurse to take a look and it was a seroma but didn't need any treatment, its quite normal for some fluid to build up for a while, just keep an eye on it and give it a gentle massage.  She told me to try to keep some pressure on it, with bra and a cushion.  It slowly disappeared on its own.  There's a lot of swelling inside and scarring we can't see but I know its hard not to worry about these things, I still find hard bits and bobs and my armpit feels different on odd occasions.  Always get it checked out if you are really worried.

Kip

xx

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Re: w, Re: Anyone starting Chemo in December 2018?

Aww no Jayne sounds like you have had an awful few days with your drains. Really hope that things improve dramatically now they are out. Sending hugs 🤗💕

Absolutelyannie sorry you are feeling out of sorts. Can you feel a lump where you have had surgery? I too can feel a lump in both my breast and under my arm but am assuming it’s from the surgery. Yes it does feel weird because there was nothing to feel before as like you I had responded well to chemo. I have an appointment Wednesday for my results so will check if it’s normal at this stage, sure it is, only been 3 wks. Ringing the nurse will probably put your mind at rest. Totally get where you are coming from. Sending hugs 🤗💕