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February 2019 chemo starters

Marlyn
Member

Re: February 2019 chemo starters

Hi enidbird,

yes I do believe the fuzzy head is here until the end....after 2 cracking days I have had a slump today...temp very low ( 34) and a call to The helpline who gave me some good advice and will be calling me back in an hour......I hope to god I don't have another hospital visit as I don't want to miss the rugby.....other than fuzzy head, fatigue and a little shivering I feel ok...lol...listen to me! I sound a right Martyr!!! Actually I am one today....lol xxx ps.  I still love every single one of you xxxx

MBJ
Member

Re: February 2019 chemo starters

Well written Susie B 

Susie B
Member

Re: February 2019 chemo starters

Hi Sissy60,

OMG!  I can't believe what happened! My heart goes out to you❤❤❤❤. How do they think you can remain calm and relaxed after the way you've been treated? What do they expect you to do? Leave all your emotions at home and put on a brave face for them? I would certainly look at continuing your treatment on the NHS. I think you would need to have a word with your doctor (in our area we can ask for a call back rather than seeing a GP), and see if they can arrange a referral for you. Yes, there may be a delay before chemo starts but that is happening with BUPA anyway. It might be worth checking out your local hospital on line to help your decision. You might be pleasantly surprised, as I was to find my local hospital's Macmillan unit was in the top 10 for excellence. The other option is to see if you can have medication to help keep you calm. I was on beta blockers from soon after diagnosis until chemo day when a settled calmness finally arrived. I'll probably, reluctantly, go back on them as surgery day approaches as I have an inherent,  unfounded fear of general anaesthetic. Wonder how your BUPA unit would react to that, threaten not to operate? You've got more than enough to worry about, your treatment at hospital should NOT be one of them. I'm so angry for you. Take care and remember we're all here for you xxx

Edinbird
Member

Re: February 2019 chemo starters

Thanks just added to my list for shops! Anxious about eating leftovers but husband needs lunches for work so this will be good 🙂

 

Still feeling fuzzy - maybe this is just the norm now?

Rosina
Member

Re: February 2019 chemo starters

Happy Soup

 

A friend made this for me last Wednesday. It’s delicious.

Chorizo can be cooked separately and served as an optional ingredient (for those who are veggie like myself) to sprinkle on to the soup at the end like my friend did.

The sweet smoky paprika really did it for me so I had to get the recipe 🤗

MBJ
Member

Re: February 2019 chemo starters

Hi Girls

Just eaten 2 slices of French toast with Maple syrup and a bit of sqirty cream. It was nice but did not really taste sweet? My taste buds  have gone to pot. Trying to drink more too got some straws now which are better I think than sipping. I need to get rid of this bloody headache. 

 

Implausible
Member

Re: February 2019 chemo starters

Those cookies look amazing, my appetite must be coming back! 😄

 

As for heritage, I feel very boring compared to you lot, I think the furthest any of my ancestors fell from me was Devon:)

Seaside Sar
Member

Re: February 2019 chemo starters

Hi Rosina

 

Wow, you have such an interesting family background. I thought mine was a good international mix, what with my grandmother being Dutch and my Grandad coming from Poland (they are no longer with us unfortunately) but yours sounds amazing!

 

I too struggled to tell my parents about my diagnosis and thought at the time that my Mum took it remarkably well. Turned out it was shock as I later found out. In fact, she broke down in tears after my first operation when they found a positive lymph node. That was harder than telling her about my cancer in the first place.

 

You are good for giving us healthy recipes. I have been less healthy this morning as I've been making cookies with my 20 year old daughter who is home from uni. Never too old to make cookies. 😎

 

 

 

20190223_113359.jpg

 

 

 

Edinbird
Member

Re: February 2019 chemo starters

Worst thing was telling my sister... my family are all hundreds of miles away back in East Anglia (I’m from Norwich I’m not Scottish!) and she has a 9 month old son who was premature so already had a lot to go through recently. Been speaking to them a lot more but I feel bad that I’m not near - not that I can do anything about it! All I can do is be me and deal with what I have to. My poor husband is currently mid washing session - sheets floors cuddly toys!

 

Ally2019
Member

Re: February 2019 chemo starters

Good morning ladies, 

 

Rosina, thank you! I have now got up, I am currently making myself porridge too 😊

MBJ
Member

Re: February 2019 chemo starters

Hi Sissy60

Of course stay with us. I think we can post anywhere we want to but you are definitely one of us. Xx

Rosina
Member

Re: February 2019 chemo starters

Hi Sissy 

of course you can stay in the February group it’s not like Brexit or something 🤔

Sissy60
Member

Re: February 2019 chemo starters

Mmm nice recipe Rosina.

its on the stove smelling delicious. Thanks:)

 

please can I stay in feb group if I start in March ... as I’m attached to you all now😥 they said def not starting on Thursday now (last day of feb) and I’d got my pup in daycare, husband off work and daughter coming back from Uni on Sunday for a week so husband can go on work trip🙄

 

have a good weekend all... weather looking very springlike💐💐 

Rosina
Member

Re: February 2019 chemo starters

Yes she is OK. I had her over for Christmas (normally we all go to my brother’s - he is working in Switzerland has a Portuguese wife - kids that get on very well with my 2) as my brother wanted ‘time out’ with his lot and then changed his mind by which time I had got mum over 🤞and everyone else got caught up in the drone fiasco at Gatwick. So I told my 2 teens ‘good practice run ‘ for the future it was their first time flying without an adult they made it as far as the gate and then their plane got diverted to Stansted. I was happy that I was not going anywhere.🤪

Implausible
Member

Re: February 2019 chemo starters

I was almost relieved that this thing waited until after both my parents had passed so I didn't have to tell them.  It's a difficult thing to hear about your child.  I hope your mum is ok?

Rosina
Member

Re: February 2019 chemo starters

Hi Seaside Sar

my husband is British Indian, my mum is a Yorkshire woman with Scots and Viking in her my Dad was Greek (he passed away 4 years ago, he used to love singing, fishing and planting trees). Mum continues to live in Greece and we must all be definitely bonkers 🤪 which I think helps during times like these. Oh mum is a ww2 baby and her generation can take anything in their stride. Funny thing about my main worry after my diagnosis when it came out was ‘How do I tell Mum ?’

Implausible
Member

Re: February 2019 chemo starters

That sounds tasty!

Rosina
Member

Re: February 2019 chemo starters

Morning allMy daughter played this to me when we were stuck in traffic

Breakfast porridge cooked in water, add soya milk after cooking. Then 1/2 teaspoonfuls of : ginger, tumeric, cinnamon and cardamom. Plus handful of berries ( cranberries, raisins whatever you fancy) plus a tablespoon of ground flaxseed plus a handful of nuts. Drink : cup of tea. It is my go to breakfast. Delicious 

Implausible
Member

Re: February 2019 chemo starters

Trixielady, you're a brave one with the hair shave, glad you had your friends around you and were able to make light of it at least a little.

 

My other half is already bald as an egg and is planning to tell people he shaved it 15 years ago in advance solidarity 🙂

 

As for Daisydi and Sissy, honestly I can't believe the lack of empathy from your medical teams , it makes me quite annoyed on your behalf!

 

To just switch off the screen on that bone scan when they could see that something was worrying you, instead of reassuring/discussing it with you, that just seems cruel and unnecessarily unsettling.  I hope you get proper answers soon!

 

And as for the "you're not mentally ready for chemo" from the Bupa crowd, that failing is entirely in their lap!  What are they doing to reassure you in such a difficult time???  Nothing!  Just keep making out it's your fault that you are upset about something every human is upset about!  Literally the only difference between your reaction to the thought of chemo and mine is that I did most of my crying at home.  But I still did the crying!  

 

Ooof I really am annoyed for both of you 😞

 

Oh and yes, let's give the new pup a bit of a rest today 🙂

 

As for me, yesterday was my toughest day yet, presumably because of the coming down from the steroids.  I was utterly exhausted all day and feeling pretty down.  Hoping for a little more oomph today.  

 

Sarah

Marlyn
Member

Re: February 2019 chemo starters

morning sissy60,

sorry about the delay, i think thats adding to all the stress, i feel as soon as your on the chemo wagon you will settle down...

On the note of too much excerise for your pup...you can defo without a doubt do damage exercising too much...a puppy has very soft bones that are forming every day, he can easily do damage as i found out at the vet when my Ella (a springer spaniel) damaged her cruciate ligament, he told me off for overdoing it with her. I found both my spaniels enjoyed mental stimulation, does your pup have a kong? would love to see a pic if you can post one! (your pup...not a kong) oh...and whats his name? I always wanted to call Ella Jerry.....but hubby wouldnt let me...spoil sport...   xxxxx 

 

 

 

 

DiKat
Member

Re: February 2019 chemo starters

Hi Sissy60

 I’m from the Dec thread and thought I would pop in and give my thoughts if you don’t mind. I’m really surprised that someone can make a decision that you wouldn’t cope with chemo without having it first. Of course you’re going to be anxious/upset, who wouldn’t be! We find an inner strength because we don’t have any choice but still have meltdowns along the way! My hubby also has private insurance with Bupa but after speaking to them we opted for NHS. I didn’t want to have to travel to a different hospital for treatment and felt I needed to be around a team who knew me if I had to go to my local a&e in case of any problems. My NHS breast and Oncology unit also gave me confidence so that helped too. Luckily for me, I feel it was the right decision as I’ve had quite a lot of problems with chemo which has resulted in visits to the unit and a&e. Local hospital is only   15 min drive. I still get some benefit from BUPA as they give cash towards a wig, cash payment for any hospital stays in NHS hospital etc. So as MBJ says, I would consider getting a second opinion from NHS. Take care x

MBJ
Member

Re: February 2019 chemo starters

Hi Sissy60

I had not realised you were being treated in Bupa do you think you should get another opinion from the NHS at this stage. I don't know if you can just ask to be reassigned. Because if you do need chemo then you need it. And I am sure you will cope admirably with it too. I did not end up with the best veins for a Canula on Wednesday but the nurse persevered with a hot blanket on my arm for 20mins to get my veins up and it worked. So you don't always need a port or a Pic line. Oh there are too many decisions to make when we just want to lie under the duvet. Take care. But I think you need to take back the control as well as this has been well and truly taken from you. 

Nettienoo
Member

Re: February 2019 chemo starters

Morning Edinbird, thanks for the motivation hun I need it. Woke at 12, 2, and 4 with my mind churning over.  Husband woke me up again at 6.30am getting ready for golf. Just dozed off and my two doggies sat whining at the gate at the top of the stairs for their brekkie. Now given up. I can catch up tonight hopefully.😴😴😴xx

ps we are all willing those bowels to get going!!!!!

Edinbird
Member

Re: February 2019 chemo starters

Good morning everyone how are we?

 

I’m actually feeling very humbled at everyone’s range of reactions and ways of coping today. I just make a joke about it and carry on but some days I’m scared no doubt and it’s so good we can just come here and help each other. The so called professionals that some of you have encountered are gobsmacking me a little! Trust that we are all here to support no matter what. We are all different and deserve to be treated as individuals but also the same - we are in this together.

 

Saturday morning motivation over! 😂 need to give my bowels a kick up the, well bowels, tbh! Fed up of constantly aching around the middle and loose clothes cos I’m bloated!

Nettienoo
Member

Re: February 2019 chemo starters

Trixielady, 

That’s the bit I’m dreading the most. It may seem superficial for us to get so upset over our hair but it’s a big part of who we are. A massive well done for coping and with a bit of humour too. What a little star you are! I hope I can cope as well when the time comes. Xx

Nettienoo
Member

Re: February 2019 chemo starters

Sissy60

So sorry to hear what an upsetting and frustrating time you are having. There doesn’t seem to be much being offered in the way of helping you deal with your anxieties by the professionals. What does your own dr think? Maybe some short term medication may help. I was put on Prozac about 6 weeks ago as I started having constant panic attacks and extreme anxiety. It has helped a little. I could probably do with a slightly higher dose to be honest (think the hygienist I saw today might agree) but I am finding I am generally coping a bit better and no more panic attacks. I hate taking mood altering meds but sometimes it’s the only quick fix when things are getting out of control. We are all here for you. I know we can’t be there physically for you but please keep airing your frustrations. It helps to get them off your chest I’m sure. Xxx

ps and if you are worried about your husband over exercising the pup just tell him to pack it in for now as I’m sure you could do without any more to worry about. 

Sissy60
Member

Re: February 2019 chemo starters

Yes MBJ they want another meeting in a week or so. I told them I wasn’t sure if my lobotomy would have worked by then. It was all a bit bizarre so I’m afraid I responded with a somewhat dry tone! You are obviously experienced and they do close ranks you’re right! Xxx

Sissy60
Member

Re: February 2019 chemo starters

Yes... agreed it’s normal to cry... why wouldn’t we? I’m a puddle as they say in US!

Im not sure when I will start. She actually said ‘chemo isn’t for everyone’... hinted I won’t cope with side effects but I said of course I was scared of chemo .. everyone is! Then she said ... we think you will come and run away! I said .. Yes I might just do that! I was actually laughing it was so surreal and the BC nurse was one of those nodding dogs and had a fixed nervous grin🤣My husband was stunned into silence ! But after first one i told her I’m sure I’d be ok...as I know from you fab girls.. but theyre clearly worried.. it’s at a BUPA place as my husband got insurance with work so I think protocols are maybe stricter like having to have a port and be totally calm and sane despite having had a BC diagnosis and enduring surgeries and treatments and tests and other shocks that we’d really rather not😬

 

On another note my husband gave our 3 month pup a workout tonight up and down stairs and all sorts. He’s still panting an hour later... bit worried about the little chap... can they be over exercised ? He’s a little spaniel🐶

MBJ
Member

Re: February 2019 chemo starters

Hi Trixielady

Well done that was a brave thing to do. X

MBJ
Member

Re: February 2019 chemo starters

Oh Sissy60

I am so sorry to hear this. How are we all expected to react then stiff upper lip and say oh that sounds fine thanks. Don't forget the medical and allied professions will always close ranks and protect themselves. Have they given you a new date or to you need a new meeting with them first to 'assess your readiness for chemo'. You could complain mind if you feel you should. 

daisydi
Member

Re: February 2019 chemo starters

Ive cried at every single hospital visit so far and at the dentist and hairdressers.  Quite normal behaviour in our situation in my opinion. 

Seaside Sar
Member

Re: February 2019 chemo starters

Hi Sissy60,

 

I'm sorry to hear what's happened to you - that sounds awful. I am pretty stunned to be honest. Did they say when you will be starting? Xx

Sissy60
Member

Re: February 2019 chemo starters

Oh nettienoo

my start date been delayed today after seeing oncologist. Because I cried at portacath appointment... the ‘team’ decided I’m too mentally unstable to do chemo. Stunned!🤪 I told her he was explaining  about a tube going into a vein by my heart and telling me about thrombosis etc etc. of course I was going to bloody cry! I wasn’t on floor beating my fists or anything. Anyway it clearly upset radiographer and was reported back and now I’m mentally unfit for chemo!!! She also reminded me when I signed the chemo consent I said it was like signing up for the lethal injection .... omg that’s my kind of joke defense thing🤦‍♀️ I wasn’t weeping when I said it! But I’ve done it now😳 So i told her I’d spent £1000 on two wigs so I was committed (not to an institution lol) - but they’d made up their minds. 

Surreal day 🤯

Must slow down on those magic mushrooms🍄🍄🍄🍄🤩🤩🤩🧚‍♀️🧚‍♀️🧚‍♀️

Daisydi sending you big hug and don’t they just do bone scan to check for density? I had to have one. Harder when you work in it though. What we girls are enduring in our worlds eh? Tequila slammers all round in a few months... if they’ve released me🥴😂

Seaside Sar
Member

Re: February 2019 chemo starters

Thanks for the exercises, Rosina. I will take a look. My oncologist is Greek - I think she's fab! Might impress her one day by dancing onto her room 😊 x

 

Trixielady, well done on going through the tough process of shaving your hair. Sounds like you had fun with it but I know it can't have been easy. Hugs to you. X

Trixielady
Member

Re: February 2019 chemo starters

Well ladies, I've had a lovely laugh with my niece & nephews girlfriend my sister and my wonderful hubby videoing whilst my niece nervously cut and shaved my head whilst i felt happy the pain was going from the hair falling out i still having haven't the courage to have a look but at at least we've captured it on video xx big hugs to all you lovely ladies struggling with these horrible feeling xx it might only be hair but it was mine!!!! 

Rosina
Member

Re: February 2019 chemo starters

A Greek folk song

 

I am half Greek, and I love the music.

The lyrics ( if you are interested are provide if you scroll down).

Good night 🦋

Rosina
Member

Re: February 2019 chemo starters

https://www.breastcancercare.org.uk/sites/default/files/publications/pdf/exercises_after_breast_surg...

 

For Seasidesar and for anyone else who needs arm exercises post breast surgery.

I was given these as a leaflet but they are available online too.

 

Seaside Sar
Member

Re: February 2019 chemo starters

daisydi,

 

So sorry you are going through this worrying time. Keeping everything crossed for you and sending you a big hug. Xxx

Seaside Sar
Member

Re: February 2019 chemo starters

Implausible and Edinbird, 

 

Sounds like we need a meet up at a hockey game! I still see Nick Poole out and about in MK and he is a lovely guy. 

 

Swindon are doing well this season, aren't they? I used to enjoy going there to the away games and siting near the top of the away block so I could just turn around and order a hotdog from the bar 😂

 

Yes, my username is a tad misleading - MK is about as far away as you can get from the seaside. It's basically wishful thinking on my part as I would love to live near a beach. Maybe one day.

daisydi
Member

Re: February 2019 chemo starters

Thanks ladies.  Luckily I dont know much about breast cancer but I have seen many many patients who have it.  They twigged I was looking at the monitor and turned it off so that makes me even more scared .....

Nettienoo
Member

Re: February 2019 chemo starters

Marlyn, I’m in Stafford so we aren’t far away from each other at all. 

Daisydi, sending you a big Friday evening cuddle. X

MBJ
Member

Re: February 2019 chemo starters

Oh Daisydi

It's is so awful when you have insider knowledge I know how that feels although I am no specialist in cancer care coming from health visiting. But when it's yourself it's so hard not to panic and I worry about all the medical/nursing discussions that go on about me as a 'case' which we know we have both done hundreds of times ourselves. It's not possible for me to say try and relax over the weekend as that in IMPOSSIBLE I know. These few days just  need to be endured. Please post as much as you feel you want or can do so all the lovely ladies can support you. Sending love to you XX. 

Marlyn
Member

Re: February 2019 chemo starters

Hi nettienoo 

totally inderstand your meltdown at the dentist, I saw the dentist a couple of days before chemo and he asked me if all ok? Well, I found meself blurting it all out! The poor man...bet he's dreading my next visit...

you say your going to Birmingham wig shopping? Where do you live? I'm in Telford...

 

i do hope your chemo goes ahead as planned, we don't want it but need to crack on...the sooner it starts the sooner it will finish....my chemo day was a breeze, very relaxed, no pain...positively skipped out of there on a steroid high....xxxxxx

Implausible
Member

Re: February 2019 chemo starters

Oh Daisydi please try not to get too worried.  It can't help 😞 not that it's at all easy not to.   hopefully you'll get positive info very soon x

Edinbird
Member

Re: February 2019 chemo starters

Yes Nick Poole - loved doing my sport back then.

 

No don’t know the Adamsons sorry

 

There is absolutely some work I can do to help but my business manager was so reluctant... waiting for speak to my line manager. There’s lots of little jobs I can do from home. Would much rather contribute now then be useless later! Oh well wait and see...

daisydi
Member

Re: February 2019 chemo starters

Its a bit of a disadvantage being a radiographer trained in nuclear medicine and seeing bits of your own bone scan.  Cant help fearing the worst.  Wonder if the chemo will go ahead on Monday if there are bone mets.  I am now even more terrified.

Implausible
Member

Re: February 2019 chemo starters

Nettie - those few days before the first one were the worst for me too - it's all so scary waiting to start something that is so completely alien from normal life - the fear of the unknown.  And I was dreading them moving my start date back as you get so attached to it.  So I totally get how you are feeling!

Stargazer1
Member

Re: February 2019 chemo starters

Hi Rosina

Thankyou for your advice I will try some yoga out tomorrow and see how i go. The class i went to did a lot of weight bearing poses and i know i wouldnt be able to do those.

I was only given 3 exercises by the physio to do, ive found some more advanced ones on line  including the 'up the wall' and will start those tomorrow too.

Lisa xxx

Stargazer1
Member

Re: February 2019 chemo starters

Hi MBJ

Haha That has made me laugh!!!

I want a bottle of Bollywood, it sounds amazing xxxx

Nettienoo
Member

Re: February 2019 chemo starters

I’m definitely up for a meet up with all you lovely ladies when we have got through this. Being part of this forum and knowing you are there sharing this bloody nightmare with me is keeping me going. I had a bad day today trying to get my urologist and oncologist to speak to each other rather than trying to communicate through me. I was so out of my depth. Im not sure whether my 1st chemo will be going ahead still on Wednesday. I will know on Monday. It’s making me so jittery. I had an appointment with the hygienist this afternoon. When I walked in to her room she asked how I was and I promptly  burst into floods of tears. Poor woman. I felt so embarrassed but once the floodgates opened I continued to snivel all the way through the appointment while she tried stoically to get my teeth cleaned up. I hope tomorrow iis a better day. Maybe the wig shopping in Birmingham will be a good distraction. X