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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Glad you’ve had your treatment. That’s a shame about the holiday though. Hope your surgery goes well and you are are recovered from it well before Christmas 😘
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Re: October 2017 Chemo Starters

Buddyfan, sorry you have had to cancel holiday. 😘 glad to hear calcium ok and treatment got go ahead 👍 you’ve  been 💪💪 telling people at your husbands concert well done, you are fantastic buddyfan ❤️❤️😘💕💕✨✨Shi xx

Member

Re: October 2017 Chemo Starters

Calcium was ok this week so I've had zometa and the rad zap. Went to a gig yesterday with my husband playing, back where we used to live. All a bit emotional telling people, but I'm glad I have. I've got to cancel the holiday as we can't afford to lose the humongous amount we have to pay on 20th to complete booking. The insurance wouldn't actually be enough to cover us, I was going to increase it when nearer the date to pay. Unfortunately that is now and I can't get a fit for travel yet until after the masectomy on 25th. Stay strong all of you.
Member

Re: October 2017 Chemo Starters

Hi Buddyfan,

 

Glad to hear you’re ok if a little shaken by your experience. You would think they could advise you to go straight to the doctors for a second test instead of sending the ambulance if they know some of them are false results. However saying that if it had been a true result you would’ve been happy they are so vigilant. It’s good your son now knows as that will take some of the stress away. Rant on here as much as you like, we’ll always be here 😘😘

Member

Re: October 2017 Chemo Starters

Hi Buddyfan,

just wanted to say I was thinking about you and sending support while you are struggling through this difficult side of your treatment. Hope rads go ok for you Friday. So frustrating when you have avoidable scares like the potassium fiasco - it’s scary enough without that. Let the tears through as they help you cope with the emotional build up. We are here for you. It’s good to share how you are feeling. Do you live anywhere near London? Could meet you for a coffee one day if you like? Sending hugs xxx 

Member

Re: October 2017 Chemo Starters

What a roller coaster for you buddyfan ❤️ It does seem a very odd system, you would think if they know that potassium test can give false positives, the first thing they would do would be a fresh test and that the paramedics would be trained to do it. Nightmare of emotions for you all. I was going to ask if you’d told the family about your diagnosis. You need their support and they wouldn’t like you to be carrying this alone. Wishing you a drama free week, hope your calcium levels improve do that you can get your treatments on time. You are in our thoughts feel free to come here for a rant any time and we will provide the hugs and support 😘
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

👭❤️👭buddyfan what a week you’ve had, it’s good you’ve not cancelled holiday, focus on it, you will go on it 💪💪💪it’s ok to have a 😢 it’s good to get them out rather than bottling it up 👭❤️👭it’s good you are getting sleep and glad your show has told son 💪 you can concentrate on you 👍 Big ❤️As always buddy fan and we have got hold of your oct17 gold hot pants tight 👭👭like it not lovely lady 😘💕💕✨✨Shi xx

Member

Re: October 2017 Chemo Starters

Had a bit of a scare on Wednesday. I was offered chemo bus on Friday for my zometa bone infusion if I could get bloods done day or so before. Normally I get bloods at the hospital, chill for hour or so for lunch then have infusion. Chemo bus is half hour nearer so thought great. Had bloods done at 8:30 Wednesday. Got a call from hospital at 7pm to say potassium was High so they'd like to see me. Said OK, I'll go in on Thursday. They said no, we want to see you now. They asked how far away we were, I said 40mins and they said in that case call 999.😲😲😲. Called 999 said maybe an hour, so decided to go by car. Got ready to go, then son appeared and said did we know there was an ambulance outside. So that took less than 10mins. They did ecg as hospital had said my potassium was 7.5. The normal potassium level in the blood is 3.5-5.0, between 5.1-6.0 mild, 6.1-7.0 moderate, above 7 severe hyperkalemia, which can give heart attack I think. Tests were all OK but as my normally very good blood pressure was super sky high, I opted to go in the ambulance. As my back pain could have npbeen masking chest pain, I think that's why they diverted off their ordinary call. Anyway, they did immediate test at a and e and potassium ok. Apparently if blood test left too long, it can result in High potassium. But get this, doc said it can happen 4/5 times a night and maybe 1/50 is a true problem. Something wrong with the processes there. All those wasted NHS services must because blood test was left standing too long. Won't make that mistake again, I'm going back to normal blood test at hospital before infusion. Turned out my calcium was too low to have the infusion. zometa lowers calcium so they've given me calcium tablets and we're going to try again on Thursday. Then my radio is on Friday. Annoyingly clashing with a once a month really enjoyable club I go to. Oh well. Psychologically, I'm feeling a bit better. Sleeping OK, fewer tearful moments, although the slightest thing can still throw me. DH tolld my son, so I feel better that I'm not having to hide my feelings. Still can't get back to feeling I'm going to beat the average of 5 years, which is how I felt before this all blew up again. Doesn't help that DH's sister has been given terminal status for myeloma. It's all a bit too close to home for my liking. She's younger than me. It feels good to blurt out my feelings. DH is wonderful and son is giving even more hugs than normal, and that was a lot even before he knew I had cancer. Still haven't completely cancelled holiday . I know I've got to., told insurance, but not the holiday company. Thanks for being there. Hope you're all doing well. Have you got back to pre cancer fitness and capabilities?
Member

Re: October 2017 Chemo Starters

How are things buddyfan?
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

If you want to eggy Jeff buddyfan you know our ears can take it, but a bleepty bleep always gets a 🤣😂🤣😂🤣 glad you’ve got a date for mastectomy 😘have you tried the surgery threads to see if anyone who has had a mastectomy can give you any support and advice? Sending big ❤️💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

Ha, I see I can't be that explicit with my language. Bleep was💩!
Member

Re: October 2017 Chemo Starters

As ever, thanks for the info ladies. Bit of a **bleep** day really, the breast care's doctor saying it hasn't spread anymore, only referred to not spreading to organs. However, there are some small spots in my sacrum and pelvis and a slight increase in the original mets around bra strap level. So the rads idea wasn't for the old area but for the lower area as she doesn't want the cancer to damage nerves serving the 'undercarriage' as she called it. I'll only get one zap so not onerous. My mastectomy will probably be on 25th Nov. They rang me with that info before we even got home. They've certainly been on the boil since deciding it was cancer again.
Member

Re: October 2017 Chemo Starters

Hi buddyfan

i bought some cheap travel bottles from the pound shop filled them with E45 and used to keep them in the fridge taking one out each day, taking it with me and putting it on as soon as I came out of rads and was getting dressed 

the ritual of going every day (I had 23 sessions)!was tiring but plenty of fluid and naps helps you get through 

 

 hugs to you x

Member

Re: October 2017 Chemo Starters

Hi Buddyfan, that’s really good news! As the others have said rads are ok you just need to keep slapping on the moisturiser and regularly air the treated area. I used e45, aloe Vera gel and moo goo. You do get fed up with the sight of the hospital though but its over in a flash 😊

Community Champion

Re: October 2017 Chemo Starters

Buddyfan

 

Thats really good news and hopefully the back pain will now ease for you as well, its amazing when we are stressed how it manifests in our body. Sendimg you hugs

 

Helena xxx

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Buddy fan ❤️❤️❤️So pleased to hear no further spread 👍and good you’ve plan too. On rads it’s piece of cake, just keep fluid intake up and if you pace yourself and have regular naps you’ll be fine. Get air to skin while at home so loose tops and a vest top under if you are going out. Drapy scarfs round front is good too. Think the creams we used were moo goo, dr organics aloe Vera and tea tree gel, e45 and aveno. It’s just like being on a Sunbed and doesn’t last longer at all, the doing it everyday will be what gets on your neoprene pants 🤣😂🤣😂🤣by the way Cassie found penguin dressed as unicorn things in paper chase 😂🤣🤣🤣🤣so there you started trend with your licky penguin 👅 🐧 😁💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

That’s good news buddyfan 😘 I didn’t find rads too bad, keep the skin well moisturized and rest plenty, just going to the hospital every day is knackering 😘
Member

Re: October 2017 Chemo Starters

Hi, I had scan on Sunday to check if any more spread. Review yesterday says no, thankfully. You can imagine how worried I've been. So had choice of mastectomy or lumpectomy plus radio. They said slightly better outcome long term with mastectomy so that's the way we're going. I don't mind. I just want to get rid of it all. They advised not to have reconstruction. I'm 61 and not precious about my figure. OH agrees and is ok with it. My back is in acute pain atm. I think it's stress and hoping it will ease up now. But we're seeing oncologist tomorrow to discuss rads on back before the op. So if there's any advice you girls can give re mastectomy or rads i'd be grateful. I didn't have rads first time around. Loved the neoprene pants. Thank you. You make me smile.
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Buddyfan, have your team got plan for you ❤️Just checking in to see where things are this week 😘💕💕✨✨shi xx

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

😘 buddyfan and we know your pants are neoprene too 😘 unless you go diving in silk ones and not told us 😳💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

Thanks for the info ladies. The pants made me laugh. Xx
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Community Champion

Re: October 2017 Chemo Starters

Hi buddyfan, it’s good to see your nhs team being so proactive ❤️ Don’t make any decisions about Maldives just yet. You could still go and then just tweak your plans around what’s comfortable for you to do when you are there ❤️❤️💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

Hi Buddyfan. From my experience the mastectomy wasnt so bad. I had my surgery on the wednesday, the following saturday I went to london for the weekend. Was a bit careful about carrying heavy bags, when I remembered. I often forgot. I only took paracetamol as a pain killer after surgery and by the sunday I was forgetting to take them. Now my right side is still a little weaker than it use to be but i dont favour it at all. I went back horse riding 6 weeks after surgery but that was mainly as i was still recovering from chemo. Sending hugs xx
Member

Re: October 2017 Chemo Starters

His buddyfan, so sorry to hear about what you’re going though at the moment but glad to hear that you are being well looked after by the NHS. We all have a lot to thank them for. We may not be active in the forum much these days but we are never far away if needed. You can always count on our support 😘 I’ll ask Cassie to pop over with regards to your mastectomy question x

@buddyfan wrote:
Well, I've come to terms with the fact that I'm probably going to have to cancel our Maldives holiday in January. I couldn't sleep worrying about it so at 5am I called the oncology nurse answerphone and asked if I could pay to get a quick scan. I was called at about 9:45 to let me know she had spoken to the breastcare team and they were going to chase up when the ct scan will be. Called again at 10:30 by bct. So again,hurrah the NHS. My scan is Sunday week, multi discipline meeting the following Wednesday, so they've booked me an apt that wed pm. Again, hurrah. I asked how long the healing process takes after masectomy or lumpectomy. She said about the same and thought I might still be able to go on holiday. Trouble is, I know there will be alot of climbing vertical step ladders after snorkelling, which is tricky with my one good arm anyway. As that one Good arm is also on the side of my cancer I think that is asking for trouble so soon after the op. Those of you that had mastecomy, how long did it take you to heal, so you could pull on that side's arm?
Member

Re: October 2017 Chemo Starters

Well, I've come to terms with the fact that I'm probably going to have to cancel our Maldives holiday in January. I couldn't sleep worrying about it so at 5am I called the oncology nurse answerphone and asked if I could pay to get a quick scan. I was called at about 9:45 to let me know she had spoken to the breastcare team and they were going to chase up when the ct scan will be. Called again at 10:30 by bct. So again,hurrah the NHS. My scan is Sunday week, multi discipline meeting the following Wednesday, so they've booked me an apt that wed pm. Again, hurrah. I asked how long the healing process takes after masectomy or lumpectomy. She said about the same and thought I might still be able to go on holiday. Trouble is, I know there will be alot of climbing vertical step ladders after snorkelling, which is tricky with my one good arm anyway. As that one Good arm is also on the side of my cancer I think that is asking for trouble so soon after the op. Those of you that had mastecomy, how long did it take you to heal, so you could pull on that side's arm?
Member

Re: October 2017 Chemo Starters

Buddyfan, sorry you're having a rough time of it. We are always here for you, just let us know what you need. Sending hugs 😘 

Community Champion

Re: October 2017 Chemo Starters

There is /fulvestrant-faslodex which I think is quite new ? and  Exemestane - which you can try I think Buddyfan.

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Hi buddyfan, that’s a good oncologist you’ve got there 👍 keep us posted on treatment plan 😘have a look through forum or start new thread to ask about alternatives to letrasole😘I am sure others will have some ideas and also use the ask the nurse facility on here too, they might have a link with info for you 😘😘💕💕✨✨shi xx

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Well said buddyfan 🥊🥊🥊I’ve just read what you have put. Jill thanks for sending link for buddyfan. I’ve asked Hannah to also post same info on the unsurvivors thread that has been started too. 💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

My oncologist has just phoned @7pm, so hurrah the NHS. After the ct scan, she's hoping everything else will still be stable. In which case, I will be back under the knife for further lumpectomy or mastectomy and maybe rads. They didn't do rads before as I think they were saving that for further down the line with my bone mets as it can help to stop the pain. She thought it most likely that this reoccurence is the original positive margins rearing up again. Therefore they are going to try a different med as well. Anyone know what they use instead of letrasole?
Member

Re: October 2017 Chemo Starters

Thanks Jill. I've made my comments know.
Community Champion

Re: October 2017 Chemo Starters

Here is the response from BCN to the concerns about the "Unsurvivors " campaign . https://forum.breastcancernow.org/t5/Living-with-secondary-breast/Is-it-just-me/td-p/1305715

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Buddyfan, please voice your opinion on the in survivors thread, I’ve asked the mods to have a look at the thread because people’s feeling, thoughts and opinions matter ❤️💕💕✨✨shi xx

Community Champion

Re: October 2017 Chemo Starters

Buddyfan

 

Here you are my darling the big pants, in two versions, because it is Strictly time we have the spangly ones as well. I do hope that they make you smile

 

Helena xxxtough pants.jpg

 

 

gold hotpants.jpg

 

Helena xxx

Community Champion

Re: October 2017 Chemo Starters

Buddyfan

 

Just wanted to send you lots of love and hugs. Can't do it from my phone but will be winging a pair of our virtual big pants to you later as i am on my mobile and rubbish at doing it on here.

 

We are all with you and climbing into the deep pockets in them to hold your hands 

 

Helena xxx

Member

Re: October 2017 Chemo Starters

Thank you. I was looking around for the message board of inspiring stories. Can't seem to find it now. I think this forum is good as I can cry my heart out to you. ❤❤❤ why are these hearts black! That's all I need. Not sure I like this new set up. At some point it was referring to us ladies with mets as unsurvivors. Ffs what were they thinking of. On a high note, I've been on loads of holidays I would never have done without the cancer raising it's head. Just have to think of the silver linings.
Member

Re: October 2017 Chemo Starters

Hi buddyfan,

I still come on to the forum as I'm not on F B and I know Shi comes on here regularly.

I'm so sorry to read about the recurrence and understand why you're feeling so upset-that's the beauty of the forum that everybody here understands what you're going through. As supportive as our love ones are, they can't totally understand in the same way as others on the forum do and also we don't want them to worry, I know I tended to bottle up my fears to them.

Thinking of you and sending a big hug,

Jencat xx

Member

Re: October 2017 Chemo Starters

Hi Buddyfan. I'm sorry things are a bit crappy for you. We are all still here for you anytime you need us. Sending big hugs xxxxx
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Hi buddyfan ❤️ Jellytot just tipped us off you’ve posted but she is unable to log on just now. 👭👭we are always here for you 👭👭 so talk away on here ❤️ Have you thought about any of the secondary threads, there are lots on there who have had secondaries for a while who would be a fountain of knowledge and support for you too ❤️❤️The other option is to use the ask the nurse facility too ❤️❤️ You are an amazing lady buddyfan, now as you said in our train, chain those thought to the back of the carriage and drag them behind 🥊🥊💪💪🥊🥊🥊 😘💕💕✨✨shi xx

Member

Re: October 2017 Chemo Starters

I don't know how many of you still look at this but I'm having such a 💩 time. At my last scan review, although the onc thought everything was ok I could feel a lump near the site of my lumpectomy. Biopsy showed it to be cancer so I'm waiting for a new ct scan and review date. I know I should try to be optimistic but it's just not happening. I just keep dissolving into floods of tears. I'm just hoping writing my feelings might help to get the helpless feeling out of my system. I think you're all on FB aren't you? I can't do that as my husband also sees that. He is my rock, I need that so I don't want to upset him. He would totally listen to me and be supportive but I need a different sort of support from him. I can't explain it.
Member

Re: October 2017 Chemo Starters

Brilliant xxx

Member

Re: October 2017 Chemo Starters

Fab news 😊
Member

Re: October 2017 Chemo Starters

Great news Jencat! Glad it was all ok for you. Yes our manky boobs will never be the same but at least we’re still here 😊

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

😁👍😁💃🏻💃🏻🕺🕺💃🏻💃🏻😘😘😘❤️❤️❤️wonderful news Jencat 😁😁😁👍👍👍👍so pleased for you 😁😁😁💕💕✨✨Shi xx

Community Champion

Re: October 2017 Chemo Starters

Great news Jencat !!!

Member

Re: October 2017 Chemo Starters

Thank you all very much for your support x Good news, mammogram was clear and everything felt fine when the consultant examined me Smiley Happy My uncomfy hard breast is 'normal', it's scar tissue and apparently it will never feel like my other one again Smiley Sad  xx

Member

Re: October 2017 Chemo Starters

Thank you so much for all your good wishes and so glad that those of you that have had mammograms were fine Smiley HappyHeart I will let you know how I get on!

I don't know why I feel so anxious because I don't think anything has changed since my oncologist checked me and said the hard area is scar tissue and normal. I'm just worried with everything that has been going on that I've not been so vigilant and might have missed something.  Also, my consultant is very good, but I find her a bit scary! xx

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Re: October 2017 Chemo Starters

❤️👭👭❤️for today Jencat 😘😘💕💕✨✨Shi xx

Member

Re: October 2017 Chemo Starters

Hope all is well this afternoon Jencat, we will be with you in spirit 😘 I had mine back in June and thankfully all was fine x
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Re: October 2017 Chemo Starters

Good luck Jencat