Anyone want to be my chemo buddy? Start may 9th

[Sue H-S]

Hi Tina,

I also had the G csf injections prescribed. I am not sure, but I think it might be individual how many you have.

I have to have them day 3 onwards for 8 days.

As totally unable to inject myself have asked my local GP practice to schedule me in for a nurse to do it, whilst over the weekend the prctice nurse has arranged to go to my local minor injuries unit.

No side effects for me - only the positive ones -

Sue xx

[Guest user]

Hi
Well its chemo eve again....finally got through to my Oncologist and shes prescribed the gsf? Injections to hopefully prevent my hospital stays! Not sure i can inject myself but ill just think of how much i hated being in hospital and that'll urge me on....anyone else have these?do they also have side effects?how many days?
As for the dreaded cold cap...well im not sure they'll let me carry on seeing as i have only about 20-30% of hair left....unless itll save the follicles ad therefore grow back quicker?
Had my wig cut today and i dont hate it as much as i thought I would. Hope everyone's going ok....ill keep thinking half way tomorrow! Love to you all xxx

[Sue H-S]

Thank you GeriF

I know I will get there - it has just thrown me a little, as it came at the same time as my challange with pain and cannulation.

Having to educate and 'manage' your employer at a time like this is just one of these challenges one should not have to face. But hey - I am certainly learing a lot through the process. Much food for thought for the future, it may just evolve into something further down the line - Campaing or something like that, who knows.

Sue xx

[GeriF]

Sue, you sound like such a strong person & are always so supportive to us all. You will get through the blips & there are many being thrown at us all the time. Like you, i'm working through the good weeks & although my employers are being very supportive at the mo i wonder for how long. Once i'm doing 20 rads i'm worried about how that will fit in.
We will all get there ... Keep smiling my lovely xx

[On a diversion]

Wow Bottyboo and Flower,

How exciting!! I don't think we'll be getting another dog but who knows 😊 

A friend of mine is going to lend us her holiday home so I'm looking forward to that. 

X 

[On a diversion]

Hiya, 

They found a cyst with my CT scan too, I'm guessing a lot of us must have them and they don't usually cause any problems ...

Sorry to hear about your employment issues Sue, the Equality Act 2010 is the one you need to refer to, there is some info on here https://www.citizensadvice.org.uk/discrimination/protected-characteristics/disability-discrimination.... I hope you get treated fairly and without discrimination.

X

[Sue H-S]

Thank you GeriF and all of the others,

Your support, shared experiences have really helped. When I see my oncologist on Friday I will ask for a PICC.

Yes, Geri - mine is a cyst, too - they just want to explore what kind, etc. I have kidney pains from time to time and I think the chemo is doing something to it - so we shall see. I shall know a lot more on Friday.

My next challenge is my employer - oh what fun - as it is a 'micro business' the challenges  of making reasonable adjustments for an employee, especially as I am the only sales person (apart from the owner) in the business - having cancer -  is turning out to be quite interesting. Does it ever stop?!

Not only have I become a reasonable expert on breast cancer, etc - I am very fast becoming an expert of employment law, Disability Discrimination Act, etc., too... 

Just as well I am currently in my recovery phase - next chemo is on the 30th.

Thank you all again 0 and huge hugs to everyone.

Sue xxx

[Bottyboo]

OAD and Flower. I'm getting a mini dachshund x chihuahua after this! Already met her, she chocolate and tan and is called Rolo ( Rowena Hermione- full name- as my daughter is obsessed with Harry Potter)
She's 5 weeks old on Thursday and is coming from a lovely lady about half a mile from where we live. Mum is lovely and so good natured and they have children who get into bed with mum and pups so will be a very tolerant puppy! Xx

[Flower2016]

OAD....I will be getting a cockerpoo puppy after all this! 

[GeriF]

Sue, sorry to hear about the challenges you are facing. Following my ct scan they found something on my kidney & after a further scan found it was a cyst. Gosh, we have no idea what's going on in our bodies. Re the line, I had a hickman line fitted prior to chemo & am so glad i did. I have it cleaned & flushed through weekly at the local health centre & shower normally. I then slot it into my bra & no-one knows it's there. Have a chat with your onc team about having a line fitted. You shouldn't have to go through that amount of pain. This whole process is difficult enough without these obstacles being thrown at us. Personally, my biggest stress was the cold cap so i decided to ditch it & have had my hair cropped. I felt better today having chemo without the pain of that awful freezing cap.
Hope everyone is doing ok xx

[GeriF]

Hi Flower, yes 3rd one all done this morning :). Hope all is well with you .. we are now half way through & that feels good xx

[On a diversion]

Slight change in subject ... Seeing as we are all approaching being a third of the way through the cycles I have been looking forward and wondering what everyone is looking forward to once chemo and radiotherapy is over? 

[Sissylw1980]

Hi sue, unfortunately the veins don't much like the FEC, It's the pink chemical that causes the most damage to them.  After my third FEC I had to have a picc fitted as the veins in my elbow area hardened up and they couldn't even get bloods out of it for the pre-chemo checks.  I was really apprehensive about having a picc fitted, but now looking back I wish I'd had it from the start.  I've developed cellulitis in my chemo arm as a result of a deep canulation and some possible leakage of the third round of chemo.  Also have trouble straightening it fully, though it is getting better slowly xx

[helly18]

Sue, just nipping over  from April 16 to say I had my picc put in after 1st chemo (wasn't time before 1st) and haven't had a problem at all its been so much easier and for he majority of time don't know it's there, you can get covers off etsy. My lower arm looks/feels like I have a piece of wire running up it and is painful when stretched out, my unit said it's damaged from the fec (thank it's the epibrubicin). I have rubbish veins so can really empathise  with you xxxx

[On a diversion]

Hi again Sue, 

Please free to message me.  I don't find bathing or showering a problem as I use a 'limbo' sleeve (available from Amazon or on prescription) which keeps it watertight.

All the best for tomorrow those having chemo tomorrow, beginning of the third cycle so you are a third of the way through now!! 

X 

[Sue H-S]

Thank you ,LucyLu, for your kind words.

I have the feeling that I shall have one put in, although next time will be my half way post, which is great.

But as you said - it will make so many things so much easier.

Hugs

Suexx

[Lucy Lu]

Sue. Like you I was a bit worried about the picc line and had my first chemo through a cannula. I was persuaded by a lovely chemo nurse to have the picc line fitted and I am so happy I did. My hand was was bruised and sore for a couple of weeks after the first treatment. I also get my bloods done through the picc line. It can be a big of a nuisance when having a bath but I am glad j have one rather than having a cannula fitted each time Hope this helps because you have been a great help to everyone eke and so supportive xx

[Sue H-S]

Hi,

thank you so much or your support. For once I am struggling a little bit. I just hate having to be so powerless not to be able to change the situation. Grrrrrrrr.....

First  painful cannulation failed, as the vein turned as they started to flush it and it came half out. Second site very sore now. Also have ta strange pain to the upper arm, too - which I noticed earlier this morning. My chemo arm, when stretching it out and turning the palm upwards is painful, a pulling, paingul feeling the upper arm. The skin on the upper arm pulls inwards in a line and is painful to toucht in that area.. I think it might the line of either the brachial or basilic vein. It is not red or any other colour- just sort of a pulled in narrow line.

Anyone with any ideas?

Hey ho - tomorrow is another day - and I am sure it will all just become 'one of those days'.

Hugs

Sue xxx

[Bottyboo]

The only problem with the numbing cream is that in itself can cause veins to go into hiding. Plus it only numbs the skin so if they have to fish around it can still hurt xx

[Flower2016]

Hi Sue

Have you asked for a local anaesthetic cream to be applied pre cannulation? This may help. Seems standard practice with kiddies but us adults do not get offered......

i am in for round 3 tomorrow. Half way! Same for Geri too I think so good luck Geri! X

[Sue H-S]

Hi On a Diversion,
thank you. This really helps - and apart from the chemo (6 x FEC), which can be given via PICC I hope to have no further reason to be cannulated, I hope!
The hair and looking good - is really no issue for me- I love my new look.

[Bottyboo]

Hi Sue. I am with you all the way on this pain thing. I have been referred for a picc cos like you I have low blood pressure and, with the amount of bloods I had taken, and the drips when I was an inpatient my veins have staged a protest. The veins on my no-go arm are fantastic almost like they're laughing at their poor relatives.
I can only talk of picc lines from my medical experience and not my personal, however they are very safe and well looked after. I am not at all concerned at having one, just thankful that one more "go" and I'll have a permanent iv access.

[On a diversion]

Hello Sue,

Sorry to hear you are having a tough time today. It's so difficult to cope when you are in pain ...

I have a PICC line. It didn't hurt when it was fitted.  I have had a lot of iv antibiotics, fluids and had blood tests etc in addition to the chemo so mine has had a lot of use. On a day to day basis it is fine, it is slightly uncomfortable (itchy) but you get used to it. There is a risk of infection but to minimise this once a week you have to get it flushed. This can be done by your community nurse or at hospital. The good thing about PICC lines compared to say portacaths is that most nurses know how to use them.

I also had had scans with contrast dyes but for these they still had to cannulate ... So you don't escape all cannulating 😢Unfortunately they bodged mine (another story) so I had numerous 'stabbings' up my ok arm and they ended up using the other arm (the one they are not supposed to use). You can always ask for  Emla cream to numb the areas if you know in advance. 

I personally don't worry about how it looks, the bald head is a bit of a giveaway that something is up! You'll look great regardless. I keep mine covered with a tubigrip when I go out and at night, just feels more secure that way ...

I think the FEC (and herceptin for those of us who need it) is more of a worry as far as heart health is concerned.

Big hugs, X

[Sue H-S]

Hi Ladies,

hope you are all doing ok.

This time I need your help. I had a special CT scan done today to check out a cyst on my kidney. I already know it is not cancerous, but we need to know what is going on. Especially, as I have been having kidney pains around day 9-10 after my two treatments.

My veins are so very difficult to get to in nowadays, as I generally have low blood pressure.

I just hate the pain, when they have to cannulate - and of course, they needed to do it again today and then the heat of the contrast injection shooting up my arm. So much pain.

Minor meltdown - I just cannot cope with any pain at the moment. Poor nurses - crying like a baby and they kept apologising....

So I am now considering a PICC line and shall discuss this with my oncologist on Friday.

I am a little concerned how I shall manage with it on a day to day basis - working and trying to look good.

Also - as it goes straight towards the heart and we know that chemo can damage arteries - I am a little worried, whether it may damage my heart. It is healthy - but I really do not want to have trouble with it as I get older.

Any one out there, who has a PICC line?

Hugs

Sue xxx

[Tanyette]

Totally agree Sarah!! How I wish we could go out there!! Looking at the sport headlines he might be making 6 changes even resting Rooney but apparently he agrees with you and I and is thinking of Sturridge and Vardy upfront here's hoping!! Hope you can rest up a bit today and enjoy the match tonight speak soon Joanne xxx

[Bottyboo]

Joanne he needs to play Vardy and Sturridge from the start. Kane had been useless and Sterling runs around like a headless chicken. I think we should brave it, go out there and give Woy a piece of our minds!!

[Tanyette]

Hi Sarah, sounds like you have got through your packing! Don't know how you are doing it! Glad to hear you didn't need your movicol too! I'm glad someone else is into their football I'm looking forward to tomorrow's match and let's hope he starts with Vardy up front. Try and take it easy tomorrow speak soon xxxx

[Bottyboo]

Hi everyone. Well despite feeling sorry for myself have had to get on with it so spent all day packing stuff. Where did I get so much cr*p from? Bit upset the amount of football has reduced. I am football mad and for once have something to celebrate as I am Leicester born and bred so am an ardent follower of Leicester City. Missed the deadline for the season ticket ballot due to chemo brain.
Joanne amazed to report I have had a number 2 both days without help although it did feel a bit like childbirth. Had the movicol all ready too.
Tina glad you're home. Definitely get the injections. Put your foot down! Ultimately it's cheaper to give the injections than have a bed used and iv antibiotics. The cost is the reason I've heard most for not giving them.
Paprika lovely photo! Just what I needed to see when a bit down xxx
Sue haha my cat would be the same! I can picture it all in my head
Have a lovely evening ladies I'm watching the French and sulking cos they're not playing their Leicester man boo

[Tanyette]

Hi Paprika, I too have been fed up with my hairy pillow!! It wakes me up tickling my nose! I have bought a lint roller which I got from a pound shop! And it's just  a sticky hand roller and you can remove the hairs pull the sticky piece of and use over again. It's for removing bits off clothes but works really well! When I go to the loo in the night I have run it over my pillow while I am losing such a lot of hair and it really helps. I put a pillow under my rt arm where I have had axillary clearance which tends to stop me rolling on it as That was my favoured side for sleeping but is too uncomfortable so I sleep left side and back supported by pillow whilst on back. Glad you enjoyed your walk and was obviously meant to be that you saw the sign! We are the boss and we can get through this if we support each other. Hope you get a better night tonight, take care Joanne xx

[Paprika]

Into day seven following my second chemo blast ! My usual positve attitude is taking a bit of beating following a restless night, uncomfortable when I lie on my minus lymph node arm, my loose hair sticks to my face night cream making me feel like a monky, it also feels like I am breathing my loose hair in and want to sneeze. Not much chance of a good nights sleep so I get up and talk to my dog who is also losing her hair at this time of the year therefore she is sympathetic. Decided to go for an early morning walk and came across this large pink sign in a back drop of green, the sign was left following the recent Moonwalk which raises money for cancer research and it said "LET'S SHOW CANCER WHO'S BOSS !!"   It gave me the boost I needed and I breathed in the fresh morning air and enjoyed watching the sun rise feeling a new strength, with appreciation for the the life around me, listening to the birds having their morning discussion, the green trees, fresh air around me...... yes, I am the boss and will fight this !

Enjoy the rest of the weekend everyone xxx

[Guest user]

Hi
That made me laugh!!
Yes.....lots of rest for me and ill phone her monday xx

[Sue H-S]

Hi Tina,

so glad to hear - and yes, that would be the best route. I am sure this can be resolved.

I finally had enough energy again today to start on the housework, which had been left for  over two weeks.

On my hands and knees, vaccuming with the short hose in all of the nooks and crannies - I managed to get one of my long scarf 'tresses' caught - and hey presto - it sucked the scarf straight off my head. Leo, my cat looked a bit stunned - and I had a most almighty belly laugh - as I spotted myself in the mirror - hose in hand - 1/2 of scarf hanging out of the short hose - and the look on my cats face - thank goodness for humour!

Hope you hcan now have a restful weekend.

Hugs

Sue xxx

[Guest user]

Hi
Finally home! With co amoxiclav antibiotics.
Need to talk to my Oncologist before next chemo though... Xx

[Tanyette]

Tina you have been so unlucky, hope you are feeling a bit better they really need to sort out your injections as you said you can't have this every cycle, thinking of you xxxx

[Tanyette]

Hi Sarah, was thinking of you today, hope cycle 2 has gone ok and that they got the vein ok! I've not been too bad just not been the loo for a week till today despite movicol and Senna. My mouth has ulcers and quite sore at the minute but fairly similar to after 1st cycle. Hope you get the house sorted it must be a nightmare whilst having chemo take care love Joanne xxx

[On a diversion]

Hiya all,

Bottyboo, been thinking of you all day and hope you're ok. Tina so sorry you're in hospital again 😞 I hope they are going to give you the GCSF injections next time, they have made such a difference to me this time around.  

Al the best Geri and Sue xx

[Sue H-S]

Hi Bottyboo,

Good luck with number 2 - thiking of you and hoping this one will be an easier journey for you.

In many ways it was for me, apart from the increased dizziness/woozyness after the steroids wore off. But now on day 8 post administration - getting back to normal.

Huge Hug

Sue xxx

[Bottyboo]

Finally a little late here goes for number 2. I can't bear to walk into the chemo suite knowing what is to come. Even knowing it will pass doesn't make it any easier. Plus have no kitchen still and now have to empty sons bedroom and medical store room for Monday so they can start on moving his wet room and bedroom. Arghhhhhhhhhhh

[GeriF]

Hope everyone else is doing well. I'm back at work full-time so not much time to post but thinking of you all. Sue, I was very woozy and light-headed during the 2nd cycle which was very frustrating. Got my 3rd FEC on Tues and half way through ...  yah!!!!! Then I start on T ...  not so yah!!!

[GeriF]

Tina, sorry to hear this has happened again. Like Sue said, you don't have to put up with this everytime. Sending hugs and hope you feel better soon xx

[Sue H-S]

Hi Tina,

no you cannot - I sent you a PM

Once you have read through, might give you something to discuss with your treatment team.

Huge Hug

Sue xxx

[Guest user]

No sue
Doc did mention it but no. I cant be having this every cycle
X

[Sue H-S]

Hi Kim,

Onadiversion put it very well. I am a Stage 2b, Grade 3 and am doing this to make sure I have the best percentage. It is usual to recommend  when percentage increase is above 4%.

The treatment teams are absolutely fabulous at ensuring that it fits with our personal 'picture' . If you pop onto the June thread  - there is a lady with a multitude of challenges and she describes how her team is tailoring her treatment. Her screen name is haz25a.

Good luck with your scans.

Sue xxx

[Sue H-S]

OMG! Do you get the G CSF injections?
Thinking of you
Sue xxx

[Guest user]

Well lucky me got sepsis yet again! Overnight on a trolley for me again. Not a happy bunny.x

[On a diversion]

Dear Kim,

First of all just let me say I am so sorry that you are facing this.  Always feel free to ask questions.

On my first cycle I was very ill and developed neutropenia and was hospitlised for over a week...  I had lots of discomfort all through my body including my mouth, throat, windpipe etc. One of my infections was tonsillitis. I am now on my second cycle and again have the mouth and throat problems but I have a mouth wash called Difflam which helps with the inflammation and pain.  Also this time I have been given injections to boost my white blood cell count. It might be worth you asking for these. I think everyone should get them! 

Reading the forum it seems to me that everyone reacts differently. Some people seem to sail through but many others don't.  I was fit and healthy before this and it's strange to be made so unwell by the treatment. I have been more or less housebound. A 5% increase is quite high in my opinion but as my oncologist said statistics are only a guide and they don't tell you what will happen to you of you do or do not have chemotherapy etc ..

I really hope the results from your MRI and ultrasound are good. 

X

[Kimucoughdrop]

Hope you don't mind be popping by here just been reading your posts and seeing what side affects your are having. Tomorrow I see the oncologist for,the final decimal on chemo. Last time I saw him he sad chemo would give me a 5 % increase I life at 10 years and my tumour was grade 3. But because of a bad airway from previous cancer treatment not BC I am worried how chemo might affect my throat. A couple of you have mentioned sore throats and I jus wondered how they are? Is it sore just at the top of your throat or does it go further down to your larynx? I have had the oncotype test done and get the results tomorrow. I am doubtful it will be low as I have been researching and grade 3 tumours are usually high. I am also having a MRI because of hip,pain and a liver ultrasound tomorrow., it's certainly d day for me. Kim xx

[Paprika]

Hi Sue, hope you are feeling better and stronger tomorrow!!! I like your positive thinking xxx

Hi Joanne, it's good to hear I am not the only one with a painful scalp, but you are right, not for long!!!

I get 6xFEC and afterwards radiotherapy. xxx

[Tanyette]

Hi Paprika, glad the gloss helped! And that you feel ok. My scalp is painful too but hopefully won't be for long! Are you having T after your fec? Xxx

[Sue H-S]

Hi Paprika,

sorry for not having been in touch - my mum keeps me busy every evening Skyping now, lol.

Hope you are ok. Had my second FEC on Thursday - was really great until Sunday and then got very woozy, with nearly every movement. Today should be my low point, so I am hoping I can finally get out again.

My hair is nearly all gone and I kinda, very weirdly, like it!

You are so right! - Next time - we are half way - YIPEE - ok more challenges until we get there, but still - looking towards the end, rather than a long road ahead.

Hugs and love

Sue xxx