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May 2017 chemo starters

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Re: May 2017 chemo starters

It really is Treehouse - and the fact that I've got to face the girl when she returns to school perfectly "normal" is going to be very tricky in my current situation.  I hope in one way she doesn't return until I'm off again for my rads. 

 

Saying that, it's amazing how resiliant children are - I've had to deal with several during my time in this job where they've suffered bereavement and that has been for parents/grandparents/aunties/uncles and of course pets - quite often they're absolutely fine and it's me who sheds a tear once they've walked away!!

 

As for looking in the mirror - it still seems weird for me too - I see the neat scar and almost feel as though it's just suddenly dropped off!  

 

My nails are suddenly causing me a problem - anyone elses suffering?

 

Don't stress Treehouse - I'm sure the surgeon would be wanting to see you sooner if there was any question of a defective implant.  

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Re: May 2017 chemo starters

Mai. My oncologist told me the same thing she said forget about the chemo and what it did or didnโ€™t do. She said the main thing is the cancer has gone and the tamoxafen will be the biggest tool in keeping it away. She keeps telling me out kind of response is fairly common on the highly eastrogen type of bc
Iโ€™m still annoyed though loosing my hair and how awful the chemo wAs and for not much of any good. But still itโ€™s done now and it did stop any spread even if it didnโ€™t kill any off. If there was any hint of non easteogen cancer floating about it will have blasted that. ??????
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Re: May 2017 chemo starters

New date. Radiotherapy starts Thursday!! Letโ€™s try again!!! Xx
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Re: May 2017 chemo starters

Jay, that's tragic news. We should be grateful that we had an earlier warning of ill health and have the NHS to help us survive.

Treehouse, I could down a few right now! here's a cheeky G&T or two ๐Ÿธ๐Ÿธ๐Ÿธ virtual drinking is all we can do now! We can't even have a drink for escapism!  Maybe the wording on your report was suggesting the scan was to check for a defective implant rather than finding it to be defective? The wording is ambiguous.  Ring your breast nurse.

I've ordered some CBD oil, if it doesn't help wth recurrence it might help anxiety and aches and pains!

Rosie, well done on making progress wth moving about and self care. Wow, I can't imagine what distress and turmoil you must have gone through with your daughter and thank goodness you made the right decision and she made it. 

WolfEE, how are you getting on with rads?

I just phoned breast nurse for a bit more clarity and she said to remember that all of the cancer was removed with clear margins and I have a pill and rads to help prevent recurrence so to try and stay positive and happy and they will keep regular check ups on me. I can request a full pathology report via PALS but after a long chat I feel better so won't bother. The consultant was ill with a cold which may be why he seemed to come across more pessimistic. So clearly the mood of the professionals we engage with affects our outlook and our level of anxiety!

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Re: May 2017 chemo starters

Well done on your ablutions this morning Rosie. I still feel a bit weird looking in the mirror but it is slowly becoming me.
Oh Jay what awful news ๐Ÿ™. I have no words.

I got a discharge letter today it states my infection which I have Googled no wonder they were checking my heart from what I just read!!!
There is also a sentence that is worrying me โ€˜an ultrasound of breast showed queried a defective breast implantโ€™ !!!!!!!!!!!!!!!
Wtf
I donโ€™t have a surgeon appointment for a month. Nobody told be they thought it was defective!!!

In fact the surgeon who came to see me said he was happy.

Something else to stress about til the next appointment.

Treehouse trying not to have a meltdown.

Mai letโ€™s go to the pub?
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Re: May 2017 chemo starters

I have spent the whole morning just removing all garments, showering, drying it all off and returning all garments. It was exhausting.

 

I have the same problem with family saying well thatโ€™s the worst over we can move forward now. I have still got to get the results from the mastectomies.

 

When I came round and they explained that the right side (non tumour side) had failed I completely misunderstood and thought the tissue was cancerous which is why they had problems. Before the op my surgeon had explained that as Iโ€™m BRCA 1 they may find cancer in that side when they remove it. So I got upset and started waffling about cancer and being BRCA positive ๐Ÿ˜‚ They were actually talking about abdominal tissue. I feel so embarrassed now, but in my defence it was after midnight and  I went down at 9am!

 

The plastic surgeon said โ€œ I think you have a lot of unresolved issuesโ€

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Re: May 2017 chemo starters

Treehouse - glad you got back in the real world yesterday, itโ€™s been a long time for you with that infection sneaking up on you. As you say we really all need to sit back and appreciate what weโ€™ve been through and how well weโ€™ve coped.

 

No way is it just 1 in 5 who have PTSD.

 

Mai, why do they have so many ambiguities in these reports. We need clear concise information, how else are we expected to make an informed decision.

 

My daughter was seriously ill as a baby and I had to decide if she should be moved to UCH in London. They were saying she wasnโ€™t well but not really spelling it out. So I asked, whatโ€™s her prognosis and the consultant said there is a strong possibility she will die if she stays here or will suffer severe brain damage, she may not survive the journey to London but it gives her a chance. So I agreed she could be moved, she survived the journey (just!) and she made a full recovery.

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Re: May 2017 chemo starters

Good afternoon ladies - glad to hear all seem to be doing OK.

 

Back in the real world for sure, as today during my time at work - I heard of a young girl (year 5) so probably not yet 10 who sadly lost her Mum suddenly over the weekend after suffering a massive heart attack - leaving behind Husband, the girl I know and her two younger siblings - it's times like this that I'm feel extremly grateful.  I can only begin to imagine the pain this family are suffering. 

 

Smiley Sad

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Re: May 2017 chemo starters

Thanks for sharing x x x x
So glad we have each other.
The wobbles can happen when you least expect them. Often when I think about the impact of my illness on my kids.
Yes so greatful for the nhs and my amazing family x x
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Re: May 2017 chemo starters

Tree, I don't know if I do cope! I try to just keep going a day at a time, enjoy the good days, and not beat myself up if I have a bad day!
Have you come across the novelist Helen Dunmore? She died of cancer earlier this year and was a similar age to me (early sixties). Before she died she wrote a truly inspiring article in which she said that she doesn't feel sorry for herself because she actually feels incredibly lucky, because she happens to live in a country with a wonderful modern health care system, and is surrounded by loving family and friends. So she felt massively privileged compared to, say, people in Syria.
I'm paraphrasing what I remember, I'll see if I can find the text and share a link. But I found it very moving and have thought about it often since then.
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Re: May 2017 chemo starters

๐Ÿ˜‚ thanks tatyana how do you cope as this is different for you?
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Re: May 2017 chemo starters

Treehouse, yes you need to give yourself time. You've been going through this for 8 months, so it's not surprising if it takes weeks to even begin to get over it. I think you've done amazingly well to pick yourself up after that sneaky infection. Take your time, and remember-- you've probably got PTSD -- as if having cancer wasn't enough! ๐Ÿ˜œ
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Re: May 2017 chemo starters

Tatyana, yes, it's hard with family and friends expecting to have a cancer free party or celebration of some sort.  When you pass on the unknowns and uncertainties no one knows how to move forward but that's what makes cancer so scary, I guess we all know this.  I think it's worth celebrating getting through treatment and just get on with enjoying the moment.

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Re: May 2017 chemo starters

I think I am getting hospital anxiety. Been rushing to the loo 5 times this morning. Been having crazy dreams too. I need to feel well and give my brain time to process the last 8 months. The last 5 weeks have been a write off mentally and physically.
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Re: May 2017 chemo starters

Mai, treehouse, yes it's so horrible to have not only uncertainty, but also a lack of clarity about the pathology. I think we are brought up in a world where people expect things to be clear, and it's a shock to find there are still so many unknowns around this disease. Family and friends find it hard to understand when I tell them I really don't know what my prognosis is. And it doesn't help when things get garbled and you get contradictory info from different bits of the same hospital,which seems to happen quite often.

As for PTSD, I agree -- only one in five?! And somebody got paid to do that research?!! ๐Ÿ˜•
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Re: May 2017 chemo starters

Treehouse, yes the feedback you get is very wishy washy. Yours looks like a typo error but who knows?! They may have meant "tested" or "removed" or "analysed" instead of "affected".  I think you want answers and they don't have them. It feels like we still know very little about cancer despite all the progress being made.  They were happy that it was all removed. I find the "partial response" hard to get my head around. Was it a 5% response or an 80% response?  I would like to have the other boob done, perhaps similar to you, remove all breast tissue like a jacket potato but keep the nipple. I wasn't genetic tested as they consider me to be so low risk for BRACA gene but I will ask again.  The post trauma of cancer leaves you feeling like you have a stalker and have to try and remove all opportunity to stop the stalker finding you. 

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Re: May 2017 chemo starters

Bloody hell mai.
I have not had any paper work with pathology on just told at an appointment which was very confusing. The top of the report said 0/4 nodes but the notes at the bottom said all nodes affected so she had to email to check. Does make you wonder if they got it right!!??!!?
I know itโ€™s scary. Especially when you see numbers.
Are they happy they got it all?
Are you wanting the other boob done?
What were your genetic results?
This disease is **bleep**. Itโ€™s not fair, you are allowed to be pissed off and anxious. We are always here to listen.
Hugs Mai x x x
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Re: May 2017 chemo starters

Only one in five! ๐Ÿ‘€ The other four had PTS but didn't realise it was a disorder after all they'd been through! ๐Ÿ˜‚

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Re: May 2017 chemo starters

Morning Ladies! Hope you are all doing well. ๐Ÿ’—

Rosie, glad you are home, now take it easy and let everyone help you. X

Treehouse, Glad you are doing ok and hoe your recovery and heart rate continue to improve. I'm still feeling quite tight in the armpit though improving slowly. I can now move my elbow out about 60degrees and last week was only able to do 45degrees. I received my pathology letter today but the detail (or lack thereof) doesn't offer much clarity so I'm going to request a copy of the full pathology report. It says there is evidence of a partial response to chemo and difficult to determine tumour size and then goes in to say a 90mm area was seen if grade2 invasive ductal cancer. I think this means that not all cancerous activity is classed as tumour. It also suggests 9/12 nodes contain "tumour" but doesn't detail whether these were isolated cancer cells or micrometasteses. Sorry, you are probably regretting asking if I'm feeling normal! Part of me is wondering how the hell I am still alive after a 90mm alien was extracted from me!  The surgery site is healing well though. 

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Re: May 2017 chemo starters

One In Five Cancer Patients Experience PTSD After Diagnosis, Study Suggests - HuffPost UK
https://apple.news/ADlhCUGEpSSaCd7WlJJfceQ
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Re: May 2017 chemo starters

Just seen consultant. Obs checked. Heart rate still a bit high. It was an airway infection and I have a non productive cough. He thinks I am just taking a while to recover from all my treatment. They took bloods and will call me back this morning if I need antibiotics.
How you doing Rosie?
Mai post surgery are you feeling more normal?
Who has treatment or rads this week?
Wolfee what is going on with your rads?
Shi hope se are passing.
Jay and heather hop you are both well.

Sorry if I missed anyone. Avoid the ๐Ÿ› bugs and stay safe. X x
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Re: May 2017 chemo starters

Well done Treehouse you achieved more than enough for one day by the sounds of it.

Rest up and sleep well xx

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Re: May 2017 chemo starters

Amazing Rosie to hear you're safely back home already - well done!  I bet your family will be delighted to have you back home too.  Make the most of your OH being home and do all the pampering you need!

 

The knickers and stockings sound so sexy!

 

As you say, you've been through lots - so no overdoing it and jeopardising the work that's been done.  

 

Fantastic that you're not having to take too much pain relief too.  

 

Sleep well in your own bed - bet you will and don't forget to turn the alarm clock off!  Sweet dreams my lovely xx

 

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Re: May 2017 chemo starters

Welcome home Rosie you rock!!!!!!
So glad oh has a week off to look after you. Take it easy. X x
Well I had to ration my 12 spoons of eneryytoday
๐Ÿฅ„๐Ÿฅ„ dunelm
๐Ÿฅ„๐Ÿฅ„๐Ÿฅ„ hobby craggy
๐Ÿฅ„๐Ÿฅ„topshop
๐Ÿฅ„๐Ÿฅ„๐Ÿฅ„ driving 2 miles- chest muscles donโ€™t like changing gear. Will give it another week ๐Ÿ™ - Wolfee can your sis drive yet? She is the closest to my surgery.
Home ๐Ÿฅ„๐Ÿฅ„. Kids need homework supervision.

Iโ€™m done for today.

Lots of love โค๏ธ
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Re: May 2017 chemo starters

Welcome home Rosie, sleep well!
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Re: May 2017 chemo starters

Iโ€™m home! Hospital WiFi was rubbish so just catching up on posts.

 

All drains are out and I am on paracetamol/ ibuprofen for pain relief and codeine if I need it. To be honest didnโ€™t need the morphine even the first night as it is more discomfort than pain.

 

Andi - the tummy does pull a bit and itโ€™s difficult to stand up completely straight at first but Iโ€™m pretty much there today. In comparison the boobs are fine, a bit sore obviously but easier to cope with. Drain removal was good too, the abdominal ones I barely felt coming out and just the Diep one was a bit painful.

 

Iโ€™m planning on taking the full 12 weeks off before a phased return to the office, but will probably work from home before that maybe after Christmas. The surgeon said I wonโ€™t feel completely back to normal before Christmas,ie doing all the things I was doing before.  OH is off work all next week to look after me. After going through this I am not going to anything to jeopardise my recovery!

 

I was advised to wear sports bra( I got a โ€œshock absorberโ€ one from a sports shop)  and back fastening. They were all very impressed with it and said it was ideal. Am wearing โ€œmagic knickersโ€ up to my waist and the green stockings so am looking incredibly sexy!! Was put in all this on the first day and up sitting in the chair and walking. They donโ€™t hang about

 

I have to wear the bra and knickers for23 out of 24 hours for next 6 weeks. All dressings are waterproof so already had a shower. In hospital the separate underwear is ideal as lots of people want to look at you constantly, sometimes just boobs, just tummy or both!! The all in ones sound like a good idea too as the knickers do seem to roll down a bit when youโ€™re sitting.

 

Am looking forward to a lovely sleep in my own bed tonight

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Re: May 2017 chemo starters

Thanks Ladies.  ๐Ÿ’— I do miss the look of the wig for the longer style but it's so nice to just have my own hair now and get on with it.  Mine is about 2cm now so a very severe pixie cut! I don't think the colour has changed at all for me, it's dark with about 10-20 noticeable grey hairs above each ear just as before! It seems to be growing in all directions on top but will probably straighten out with the weight of longer hair. ๐Ÿ’๐Ÿป

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Re: May 2017 chemo starters

Jay, I like plain double cream,or even better, clotted! Brandy butter is too rich for me, the pud will have plenty of brandy in it by then!

Mai, congrats on the new look, sounds great! What a feeling of freedom to be lola-free!
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Re: May 2017 chemo starters

๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜๐Ÿ’•๐Ÿ’•๐Ÿ’•โœจโœจโœจ๐Ÿ’ƒ๐Ÿป๐Ÿ’ƒ๐Ÿป๐Ÿ•บ๐Ÿ•บ๐Ÿ•บcelebrating treehouse and mai going Lola free๐Ÿ’•๐Ÿ’•โœจโœจshi xx
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Re: May 2017 chemo starters

I agree Mishy we definitely deserve a great Christmas - I'll be suffering side effects from rads but hey - at least I'll be here!!

Good luck with the shopping on Tuesday - keep away from the germs x
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Re: May 2017 chemo starters

Wow Mai that's brave going without Lola - I go without mine around the house and garden but I can't face outside world yet! My hair is well over an inch long now and really dark - anyone elses coming through darker than before? I do have white/grey round the edges too - I almost look like a schnauzer breed of dog in colour!!

I worried about having to have more chemo - what daft silly creatures are we!!

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Re: May 2017 chemo starters

Homemade Christmas Pudding - nothing beats it - well done Tatyana - what you going to have on it? Brandy butter/brandy cream/custard/creme fraiche or cream? What's your favourite? I like a little brandy cream or just plain custard....
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Re: May 2017 chemo starters

HOORAY - Welcome back to Planet Earth Treehouse - it's good to hear you've returned... now remember to ease in gently - shake off those cobwebs - and come join in the fun!  

 

Hope today continued to be both positive and good for you xx

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Re: May 2017 chemo starters

Mai how fab is that, you have a short pixie I literally can't wait for that style I so miss my hair!!!!
Yeah it def doesn't help to keep warm with a lack of both head and body hair!!!
Definitely getting some thermals haha
It's great to hear everyone is re-entering normal land now!! Christmas will keep us distracted we so deserve a decent one don't we, I braving the metrocentre on Tuesday as I'm officially entering week 4 on Wed, I know my neuts should be in recovery mode and taking a lightweight scarf which I can discreetly cover my face up with should I spot a cougher or a sneezer ๐Ÿ˜ท๐Ÿ˜จ needing some retail therapy totally desperate for some new jumpers and things!!
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Re: May 2017 chemo starters

Rosie, thinking of you with those 4 drains and hope you are doing well and will soon be back home.

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Re: May 2017 chemo starters

Morning Ladies! Hope you are all doing well.  ๐Ÿ’—

Mishy, I too feel the cold more at the moment and keep turning up the heating as well as wearing a cardigan. It is turning colder but I think the lack of hair around the neck makes you feel colder.

We went out for a meal last night and for the first time I went without Lola! So I'm now committing to going with my very short pixie cut.  My worst fear is that I have to have more chemo and then won't be able to go back to a wig longer than my hair!  There has been no mention of more chemo so to just my anxiety at work!  

Treehouse, welcome back and make sure you re-enter the worlds atmosphere slowly, dump your space capsule in the sea and cruise gently to dry land in low populated areas! ๐Ÿ˜‚

Tatyana, well done on committing to Christmas participation with your early Christmas pudding. I assume this allows plenty of time to feed it daily with brandy and/or sherry!? 

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Re: May 2017 chemo starters

Welcome back treehouse! I've been avoiding the very thought of Christmas, but guess what,yesterday I made a Christmas pudding. So we've got to have Christmas now! Enjoy your shopping. Online or real??
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Re: May 2017 chemo starters

Morning all. Hope everyone is ok.
Rosie are you still due for release tomorrow? Have you managed to put a bra on yet?
I am feeling better, going to try driving today. ( first time in 5 weeks!!!!! Where did that time go?)
Also woken up thinking about Christmas. Want to start shopping.
I love Christmas.
Really not been well enough to even consider it the last fortnight. Hello world I think I am coming back.
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Re: May 2017 chemo starters

Mishy my temps been around the same as yours on my 2nd fec even though Iโ€™ve had heating on all the time, itโ€™s not having hair brrrr, Iโ€™ve got my ear muffs out my rucksack and whatโ€™s wearing them in the house the other day ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ’•๐Ÿ’•โœจโœจshi xx
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Re: May 2017 chemo starters

Glad it's not just me then treehouse I'm thinking of buying myself some thermals!!
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Re: May 2017 chemo starters

Mishy that is rubbish. My Chemo was through the summer and to be honest with hot flushes I was whipping off my wig as soon as possible. I have noticed the cold since Chemo has finished and been wearing a hat in the house and have a blanket on the sofa. Even used my mums electric shoulder warmer after surgery.
Lack of hair and winter weather is not great.
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Re: May 2017 chemo starters

Andi, I live in a village just off A1 between Grantham and Newark so not far from your Mums.

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Re: May 2017 chemo starters

Also wanted to ask although most of you have been finished chemo for a while did any of you find it hard to keep warm I'm constantly cold all the time having yo wear my sleep cap in house constantly and wearing vest under jumper everyone is moaning cos I have the heating in all the time my temp constantly between high 35's and low 36's I've always felt the cold but this is unreal!!
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Re: May 2017 chemo starters

Andi, yes it does save money! Even if you only wear the sleeve occasionally, like me,you still have to replace them after a year or two, because they lose their ooomph (technical term!).
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Re: May 2017 chemo starters

Tatiana - thanks for info. Iโ€™ve left a message on the answerphone at the hospital for someone to ring me back, which wonโ€™t be till Monday now. Iโ€™ve been reading so much on reducing risk of lymphadema getting worse and how to manage it and your right, a fitting by a professional is best course of action ๐Ÿ™‚ Iโ€™ll let you know how I get on. Hopefully it wonโ€™t be too much of a wait. Nice to know the sleeves are on repeat prescription otherwise could get quite costly!
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Re: May 2017 chemo starters

Daffodil ๐Ÿ˜˜๐Ÿ˜˜wonderful news you will get to Italy, that will be lovely ๐Ÿ‡ฎ๐Ÿ‡น ๐Ÿ‡ฎ๐Ÿ‡น ๐Ÿ‡ฎ๐Ÿ‡น hope your infection clears up soon too. ๐Ÿ’•๐Ÿ’•โœจโœจshi xx
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Re: May 2017 chemo starters

That's what I thought I'm day 18 of last chemo still had no planning app I am going to get on the phone again in Monday!!
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Re: May 2017 chemo starters

I have not cooked for weeks ๐Ÿ™family have been rallying round. I really need to rejoin the world at some point.
Exercise time I have finally worked through to number 8.
Not exactly at my yoga best but getting there. Baby steps x x

Sister has made my feet smell Devine. Nice to see her but not as relaxing as it could have been as she was discussing her problems ๐Ÿ™. ( hey I am the one who has had cancer lol)
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Re: May 2017 chemo starters

Mai, thanks for the recipe, looks fab! I'm having a freezer cooking session this weekend, to stock for post-surgery and also stock up for aged parents as mom has been unwell. I'll make your banana bread for me and hubby, but unfortunately both my parents loathe bananas for some weird reason!
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Re: May 2017 chemo starters

Hi Mishy, my rads started just over 2 weeks after last chemo. My oncologist says she usually likes to start 2-3 weeks after last chemo x

Hope everyone else doing well? Having lazy day today just had nice peaceful bath whilst the hubby and boys are out x