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December 2017 Chemo Starters

1,748 REPLIES 1,748
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Big hugs to you Moijan xx
Moijan
Member

Re: December 2017 Chemo Starters

The Royal  Marsden ? Well, if you do have to be referred....they do have loads of trials going on...rather like the Christie. But. I hope you are lucky this time.

 

 

I have three monthlyscans, but last time was a bit inconclusive so next one after two months...am praying for a better result as the side effects aren’t pleasant.xx

 

 

love and hugsxx

 

Moijan

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Hi Moijan, I’m good thanks. How are you? I’m back to work tomorrow after having 4 weeks off post op. I can’t remember what I’d posted but it was cancer again. No chemo due to toxicity and the fact that it’s not doing anything. CT every 3 months, the next one being the end of June. There is also talk about being referred to the royal marsden if it comes back again. I have that horrible sinking feeling but I tell myself if they’re not worried I’ll try not to worry 😬
Haha..good old Siri! 😂 I hope you’re doing ok? Xx
Moijan
Member

Re: December 2017 Chemo Starters

Unicorngirl mummy, how are things now? Hoping you feel ok? Lots of love😘🤗

 

since ivehad had mets I find my swear meter registers much higher...

.
you know yesterday, I got frustrated with my phone and said S**t ! as one does.......and Siri said
’I hope you don’t kiss your mother with that mouth’!

 ‘I did laugh. I hadn’t realised he’d. herd me!


anyway, do Keep in touchxx

 

Moijan

Camilla9
Member

Re: December 2017 Chemo Starters

Hi Cathy, I requested to be a friend on FB to join you and the others from the forum. Real name Jane Wilkins.

 

Thanks.

Cathsin
Member

Re: December 2017 Chemo Starters

Camilla on FB search for Cathy Sinnott (Cathy O'Leary) photo is me and my daughter and then me outside the Louvre I will then add you to the group x
Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Unicorngirlmummy 😘😘😘my darling 👭👭👭sending you ❤️❤️❤️❤️And some 🤸‍♀️🤸‍♀️🤸‍♀️🤺🤺🤺🤼‍♀️🤼‍♀️🤼‍♀️🤼‍♀️🥊🥊🥊🥊 as extras because I know you have plenty already 💪💪💪💪lady. Camilla, pleased you are getting a visit to your daughter and baby grandson 😘😘😘💕💕💕Shi xx
KirstyH
Member

Re: December 2017 Chemo Starters

Yes come and join the facebook group that cathy set up camilla xx
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

I’ve messaged you Camilla xx
Camilla9
Member

Re: December 2017 Chemo Starters

Hi Unicorngirlmummy. So sorry cancer yet again. The Royal Marsden is excellent so if you have the chance to be seen there that would be good.

 

Yes, I have been allowed next week with no medical appts to go and see my daughter and bahy grandson in Cornwall. I will be able to pick him up while I stll have a good left arm before the op.

 

I didn't know some of you now contact on Facebook. I do have a page but haven't used it in years. Can you message me contact details? I thought this site was rather quiet compared to other months.

KirstyH
Member

Re: December 2017 Chemo Starters

😘😘😘
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Hi ladies, had my results and it was yet again cancer. The surgeon got it with a clear margin but I was told that the last 2 times. I’m seeing oncology on Thursday but the surgeon said when I was discussed at MDT a referral to the royal marsden was mentioned as I’m very unusual!! Will you get to your daughter Camilla? I know several of us are on a Facebook group but I hope those who haven’t been on in a while are doing well xx
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Thank you lovely Shi 😘 I’ve got my results tomorrow with the surgeon though so it must be bad news 😬 xx Camilla I bought a chillow from amazon, about £15 maybe. I found it made my neck ache lying on it all night and it doesn’t stay cold all night. It definitely helps take the edge of the hot flush though. I put it under my pillow and when I wake I put it on top which is instant relief!! Xx
Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Chill pillow from jml get from Wilkos or asda I got one but found having a fan blow up and down the bed better solution. Camilla google them to see if you’ve one near you it’ll be worth it, put it this way the real hair one my husband paid a fortune for has not been worn since as I’m happier with a 14.99 one I got from there 💕💕Shi xx
Karebear
Member

Re: December 2017 Chemo Starters

Has anyone seen the cooling mats for your pillow
My hot flushes are getting worse so i was wondering if anyone has tried them before i buy one
Camilla9
Member

Re: December 2017 Chemo Starters

Unicorngirlmummy, U are like me and immediately jump to worst case scenario. I hope it isn't, keep us posted.
Shi, I haven't heard of that wig place. Mine cost £200, a waste of money.
I am 10 days from last chemo and hope my own hair will start growing soon, but thanks for sugg.
Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Unicorngirlmummy 😘😘😘my 💪💪💪💪 beautiful lady, sending you ❤️❤️❤️👭👭👭they can swap onc appointments all over the place please try and keep positive they may be getting you in sooner because it’s good news and want to let you know. 😘😘💕💕Shi xx
Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Camilla ❤️❤️If you have a luvyababes near you, please pop in they have a new range of wigs which are fantastic 14.99 - about 22.99 so natural looking and good quality they are amazing I’m sure you’d find one that would make you feel more you, I’ve been wearing one from there and old work colleagues who didn’t know about this journey couldn’t tell, so hope you can find one that gives you ‘you’ back my darling 💕💕Shi xx
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

You need to feel comfortable and confident in the wig Camilla, you’re better off with a scarf if it bothers you that much, for your own self esteem. I know exactly what you mean though. On the Facebook group I was just telling the others how I went to a wedding yesterday. I spent over an hour trying to stick on fake lashes but they just wouldn’t stay. Although I kept my hair with the cold cap this time (most of it), it’s still short and not how I’d chose to have my hair. My ankles and knees were agony all day in heels and I felt so, so self conscious looking like that! To top it off, as we were leaving the post came, there was a letter bringing my oncology appointment which was the end of the month, forward to Thursday. My results were discussed on Thursdays MDT so that can only mean it’s cancer for a third time. I’m seeing the surgeon on Tuesday but there would be no other reason for my oncology appointment to have been bought forward 😔 It was very hard to try and spend the day being happy when your insides feel like jelly. Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Thanks for suggestions.

 

The reason I don't like my wig is because it looks like one and I just want to blend in and not stand out - so I feel uncomfortable. I shouldn't care what strangers think I suppose! I look like an ancient Cleopatra.

Moijan
Member

Re: December 2017 Chemo Starters

Can always take your wig with you and in the unlikely event they query it...you could slip it on

 

mx

Moijan
Member

Re: December 2017 Chemo Starters

Hi Camilla

 

just to say, I had full axilliary  clearance. Had 12/13 l/n pos so was likely best thing. 

‘Take good care of that arm afterwards. Wear gloves if there’s a small chance you might get cut or scratched. I had an infection and have lymphoedema in that arm. No bloods from that arm or Bp measurements.

 

Having said that...I’m quite used to it...but prevention is a good thing

 

hugs,

 

Moijan🤗

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

In my passport photo i hsve long hair & when we went on holiday last year I had a pixie crop & passport control didnt say anything. As jencat sats, you could get a letter on headed paper xx
Jencat
Member

Re: December 2017 Chemo Starters

Hi Camilla, was just wondering if you could get a letter from your GP or onc to explain you've just had chemo which you could take with you incase your passport is questioned xx

Camilla9
Member

Re: December 2017 Chemo Starters

Hi Kirsty my op 23rd May and I'm flying down to Newquay to see my daughter prior to the op.
My worry now is I hate my wig and in it look nothing like my passport photo - I usually wear a scarf or turban. I'm wondering about going through security if they'll ask me to take my head covering off.

Jencat
Member

Re: December 2017 Chemo Starters

Karebear, I've replied to you on the Oct thread x

Karebear
Member

Re: December 2017 Chemo Starters

Am sorry to hear your news but your a strong women 💪💪. Your in my thoughts xx
SamH87
Member

Re: December 2017 Chemo Starters

Oh Camilla - I’m so sorry to hear that. To echo some of the other points though - the herceptin should kick some ass if you continue on that. Iv read some pretty wonderful things about this drug.
I didn’t have full axillary clearance but I had a lumpectomy and and 3 nodes removed and found having a front zipping bra a god send. Make sure you do the exercises they give you! 😊😊xx
Carolyn52
Member

Re: December 2017 Chemo Starters

Hello camilla

Sorry to read about the lung nodule ..it's a bit of a kick in the teeth to get this dx at primary stage but it's been found and treatment can be started now.

You might like to join us on the secondary threads but we do have a lady there that has been living with secondary lung mets for twelve years ...

You will get a lot of support here from real people that understand. .I would also say ...try to avoid Google as that is not a true picture of the real world.
Holding your hand xxx
KirstyH
Member

Re: December 2017 Chemo Starters

I was in hospital for 5 nights due to having the reconstruction, I was ok when went home and even while still in hospital I had a shower myself the day after the.op,was also fine getting dressed etc. The main things id say was have clothes that button up the front and the post surgery front fastening bras as you may struggle to get arm round your back initially. Once home I was tols now allowed to do any heavy housework so if there is someome that can give you a hand with household things for the first few days that's the most important thing.
What date is your op again? Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Thanks everyone. Hard to feel happy about anything.
Kirsty, can you tell me how you were after going home from the hosp? I need to prepare for what help I might require. Cld you put on your underwear and dress yourself? Wash? How able to do things were you initially.
Wld b so helpful.

Pitfalls? Probs to look out for?

Tx.
runawaygirl248
Member

Re: December 2017 Chemo Starters

So sorry to hear of your scan result Camilla and am thinking of you. Good to hear that your medical team are going ahead with the planned operation though ❤ Sending you a big virtual ((hug)) x

Anniej
Community Champion

Re: December 2017 Chemo Starters

Hi Camilla, popping in to give support. I'm ER+, HR-, and had complete LN clearance. It was a bit more of a problem for me than the booby stuff. It's more a smash and grab. 7/15 LN proved cancerous, so that was the right decision. My first CT scan showed an 'anomaly' in one lung, nothing to worry about (!) and I plodded on with the planned treatment, op, chemo, rads.  Two mets were found in each lung one week before the end of my rads in October last year. I totally sympathise with where you are. I think devastated does not begin to describe your feelings at the moment. However, if I can echo my Onco, there are loads of tricks in the bag! My treatment continued - so I finished my 5 boost rads, and then went straight onto a drug called Palbociclib. This works with the aromatise inhibitor Letrozole to restrict the growth of tumours. I had started Letrozole before my radiotherapy, so that was always the long term plan. I have finished three cycles ( 12 weeks) of the Palbociclib and my CT scan shows all four mets have shrunk. So yay me! 😍 . I have accessed my Maggies centre who have provided a great deal of support throughout my whole journey. My GP also offered access to their Macmillan nurse, but I get all my support from Maggies . I go to the monthly secondary BC group meeting and find strength and support from other members. Our motto is - we're living with cancer not dying from it. Have faith in your medical team. They will be discussing your case, taking all the facts into account, and working out your treatment. Please PM me, Camilla if you need to talk. X

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

I’m so sorry to read this Camilla, it’s not what we wanted to hear 😔 I’m gutted for you. They’re still going ahead with the surgery though so they’re still treating this. Have they discussed how they’ll keep the lung nodule at bay? I hope you can get to see your daughter before your surgery. Big hugs to you xx
Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Camilla ❤️❤️❤️Sorry to hear your news beautiful lady, I’m pleased that they are still going ahead with your surgery have they kept the date same for you? 👭👭👭💕💕Shi xx
KirstyH
Member

Re: December 2017 Chemo Starters

So sorry to hear this Camilla 😞 the worst news. But good surgery still going ahead to remove the primary cancer and then you will continue on treatments. You are her2+ as well arent you? So herceptin should continue permanently now? Are you also hormone positive at all?

I had axillary clearance 2 weeks ago, was ok but have developed cording which ia restricting movement in arm at the armpit area so habing to do stretches and massages to try and release it. Make sure you do the post op exercises religiously that they give you. Will be thinking.of you xx
Jencat
Member

Re: December 2017 Chemo Starters

Camilla, I'm so sorry to hear your news and I'm thinking of you x

Cathsin
Member

Re: December 2017 Chemo Starters

Sorry to hear that Camilla they must think that is the best way forward for you though x
Camilla9
Member

Re: December 2017 Chemo Starters

Well, had my scan results..

 

The lung nodule is cancerous. Am gutted.

 

To my surprise they are still doing my op and I am to have a lumpectomy and complete axilla clearance on May 23rd.

 

A lot to take in.

 

Has anyone else had an axilla clearance...?

Cathsin
Member

Re: December 2017 Chemo Starters

Hope all goes ok Camilla x
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Fingers crossed for positive news Camilla xx
KirstyH
Member

Re: December 2017 Chemo Starters

Thinking of you today, good luck and let us know how you get on xx
rabbit28
Member

Re: December 2017 Chemo Starters

Camilla, good luck with your results today xx

Jencat
Member

Re: December 2017 Chemo Starters

Camilla, thinking of you tomorrow x

Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Camilla 😘😘😘❤️❤️❤️👭👭👭👭for your meeting tomorrow, you keep 💪💪💪💪because you are amazing 😘😘😘💕💕💕Shi xx
Jencat
Member

Re: December 2017 Chemo Starters

Glad you haven't got to wait long for the scan results Camilla, you are in my thoughts and praying that you get good results on Fri x

Camilla9
Member

Re: December 2017 Chemo Starters

Thanks Shi. The scan itself was no problem and I'll know forward treatment on Fri.

Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Hi camilla, sending you ❤️❤️❤️❤️ And ❤️❤️❤️❤️❤️👭👭👭👭❤️❤️❤️❤️❤️Hope you got on 👍👍👍👍💕💕Shi xx
KirstyH
Member

Re: December 2017 Chemo Starters

Thinking of you, good luck! Xx
rabbit28
Member

Re: December 2017 Chemo Starters

Camilla wishing you all thes best of luck for today xx