May 2017 chemo starters

[treehouse]

Up, dressed and about to brace traffic for appointment. Feeling fragile.
Hope you had a better night kala.
Take it easy ladies x

[Jay68]

Ahh so I have a fairly small tumour at bottom of breast but I have an area of DCIS behind the nipple. I may also need rads! So could be any of these reasons!

[treehouse]

It may be due to position or size of tumour or size of boobs.
My tumour is high up away from my nipple and my boobs are v small.
Also they don't expect me to need rads.

[Jay68]

Hi Rosie - no I don't know why - it was the surgeon who told me I couldn't but both my Husband nor I recall a reason for it.

[Rosie65]

Curly - I had 2 units of blood a couple of weeks ago and it took 5 hours and was very boring but I felt so much better afterwards. It will be worth it.

treehouse -  I will be interested to see how you get on with your double mastectomies as it will take place before mine. Most people I know have only had the one side done or lumpectomy.

Jay - do you know why you can't have immediate reconstruction? My oncologist seemed to think I wouldn't be able to have it immediately but I don't know why

Kala - I have seen lots of people with two or three  relatives in the chemo unit so thought it would be ok. They had to rotate and take it in turns to sit behind the wall where I was sitting and then swop over. It was a real farce!! She said it was for health and safety reasons and to make people realise they can't have more than one person. At one point I was the only patient there😂😂 As if having chemo every week isn't bad enough without having to deal with all that.🙄

[Raitchr]

Mai7, a ruck sack might be ok eventually. The scar from the top of my MX scar for sentinel node biopsy runs up to my arm pit. It is the part of the scar which feels like it pulls a little and after the op for weeks it hurt. I was to!d it is bound to hurt as surgeon had to root around in tissue to find the nodes to check. It is ok now but a ruck sack would have hurt for a long time.

Heather

[Jay68]

Kala - not had sickness but ginger helps - so try ginger tea or ginger biscuits - ginger ice cream might be good too if you can get it.

I've done lots of reading about Herceptin and haven't found any reference to it causing sickness - so you'll be OK on the injections.

[Jay68]

Don't apologise Treehouse - we're all in the same boat!!

My memory is shocking now ... but I do remember that I'm having right MX with all nodes removed on that side too!

[treehouse]

What is your surgery Jay. Sorry if you have already said. I am brain dead at the moment

[Jay68]

Treehouse I have no idea how we can ever repay the amazing people in our lives, let me know if you come up with any ideas!

[Jay68]

I'll keep my eyes open then Rosie - now I know who I'm looking out for!!

You rebel although I must admit I didn't know you're only allowed one person.

28th September will soon be here x

[Jay68]

Treehouse - I feel your excitement and terrified emotions - I'm exactly the same!

[Kala]

Rosie I got told off for both my daughters coming in with me for a pick flush lol , so I asked my youngest to wait in the waiting room but I never realised as I only ever have one person with me but I have seen more than one person going in with other patients to be fair. I guess there is just not enough room unless you pretend to be some piece of equipment or part of the wallpaper lol xx

[Kala]

Argon oil Trisha! Isn't that for your head ?  So many things I don't know about . Hope your ok and having a better  late afternoon , evening. I had a two hour wait for pick flush as they were so busy. Had soup in the cafe but when I came home it didn't stay down but at four I ate more soup and feel slightly better although still sickly. I keep thinking hey it's not forever so I'm listening to my body and staying in bed resting and taking all the drugs offered. 

Trisha they said I had to keep my pick line in for a couple more weeks in case I get infection again as my veins are pretty rubbish. Did you have yours taken out after your last chemo ? . 

I have this gloopy medicine called peptac for evening as I take omaprazole in the morning and can't take any more of them until the next day but by teatime indigestion hits again even though I'm on bland food so I'm glad  I have peptac .

what is everyone eating to help with sickness and does herceptin injections cause sickness too? Gosh a whole year of sickness, I couldn't cope with that lol.

How is everyone dealing with the thought of going back to work. I haven't got the energy to work yet and I know some ladies are working and I don't know how but I salute you 😊😊😀😀😀xxx of course I want to work but I can't seem to focus on even thinking about it at the moment. Is anyone else feeling this way. 

When I was having my pick line flushed the nurse said how many times have you been in hospital since starting chemo and I said just the one time with temp etc. She said that was really good so I'm thinking I bet they don't really tell you that's it's pretty normal to go in more than once during your treatment. I have problems with my temp going up then down, I feel I'm getting obsessed with my thermometer 🤒, gonna break it the amount of times I'm using it haha.

Also I want to go for a walk but when I'm sick it happens suddenly and I don't want to projectile vomit over anyone on my way. Hope everyone has a peaceful evening amid all the farting burping etc etc xxxxx

[Trisha69]

It's hard for them too. I m a total vegetable today. other half cooking me mash sprouts n sausages in gravy. Hate not being able to taste my food. the foot mask was brill. have very soft feet 🙂

[treehouse]

I know what you mean about no energy ( or motivation) I don't go to my GP for sick notes cab to sit in the waiting room for an hour with germs.
I got a telephone appointment and he agreed it in less than 2 min and hubby can collect the note on his way home tomorrow.

I feel so useless. Mum and husband are running around doing everything.
Any ideas how to repay the amazing people in our lives?

[curlyh]

Yes Treehouse 1st transfusion I can't believe it takes 6 hours but hopefully will boost me a bit 😀

[Trisha69]

Hi Treehouse,  I rang BC nurse this morn (mine on annual leave for 2 weeks) The lady I spoke with said should call the Unit direct but cba, having a feel rotten day. She was a bit vague and said it could be that they prefer to use a canular and not injection, she said they were right to take PICC line out.  Its all very confusing. I asked about bringing surgery forward and she said they would make me wait 5 weeks after last chemo to give body time to recover so looks like mid October, so maybe a week earlier than I was expecting..  Seeing Surgeon 21st after mammogram and scan.  Went Docs this morn for another sick note, so darn tired all the time and cannot imagine working anytime soon.

Am only day 3 and already furry mouth and no taste buds or energy.  I am sitting here with my feet in plastic boots filled with argan oil that a friend gave me.  I do look silly and walking like a duck!  Yeah I know supposed to sit down and relax.

Hope all you ladies having a good day x

[treehouse]

Rosie you rebel breaking those chemo ward rules!!!!
You are there so often you deserve it 😂

[Rosie65]

I might see you then Jay, I'm there from 10:30 but it's carbo/taxol this week and that takes a minimum of 4 hours. That's if they let me back in, I got into trouble last week for having two people with me (sister and daughter) apparently you're only allowed one person to accompany you!

treehouse - I still have to go each week so no bell ringing for me until 28 Sept

[treehouse]

Yes the plan is to have double mastectomy and immediate reconstruction. 😬
Both excited and terrified at the same time.

[Jay68]

Treehouse - ergh poor you having to see surgeon at that time of day on day 5 - nasty!

Are you hoping to have immediate reconstruction? I've already been told I can't have any reconstruction for 12/18 months.

[treehouse]

Is that your first blood transfusion curly? I really makes a big difference. Glad you have one soon before these se hit too hard.
When is your last one Rosie? Will you be ringing that bell? 🔔

[Jay68]

Hi Rosie - My appointment time is 2.15 at Crawley - asked to be there for 2pm. x

[curlyh]

I know Treehouse will definitely not be celebrating till I feel more normal in a couple of weeks...treatment went fine but my haemoglobin was down again so getting blood transfusion on Wednesday..not low enough to stop treatment but has got worse each time and will probably be much worse this time...so sadly never got Picc line out as will be used for blood and have to keep it for 3 weeks in case of infection..as I have had a few bouts of phlebitis....so only a small bell ring in my head for now 🙂

[Rosie65]

Curlyh - congrats on your last treatment, hope all has gone well

Kala - your weekend sounds horrible, hope things are starting to improve now. I work for national government and usually can only carry over one week's holiday but if you're off sick you can carry over whatever holiday you have left into the next year and don't lose any.  I don't know if the NHS would be the same

Bloods all good this week ready for my final 3 weekly cycle. In fact neuts were 42.5!! So I have to stop the filgrastim injections. No more oncologist appt for now and see surgeon Sept 21st

Jay - what time are you having your injection?  I might see you as I'm there on Thursday.

[tatyana]

Hi guys, it's so nice to hear about people making holiday plans. Still a long way off for me, but the future is out there!
Kala, hope you are feeling better and that the sickness was a one-off.
Re handbags- I had to change sides after ax clearance 15 years ago, at first it seemed impossible, but my chiropractor said it was the best thing that could have happened, because finally my spine straightened out after decades of me lugging a heavy bag on one side! I now collect convertible bags that can be either carried on the shoulder or as a backpack, much better for weight distribution. But it may not be easy to use a backpack at first as the strap inevitably cuts into the scar tissue. I used to pad the strap with a bit of foam, actually an old shoulder pad!

[treehouse]

Trish, any news on the herceptin injections/ IV ?
I can't change my surgeon appointment so looking like I need to be at hospital for 8:45 tomorrow. ( day 5 eek)
GP signed me off til Nov but I think that is just for now. Will wait and see how surgery goes. Been re reading the mastectomy and reconstruction leaflets in bed .
Really hope we can stick to the original plan and they don't find any surprises.

[Mai7]

Congratulations Curly on your last chemo. You give that bell a good ring. 🔔

Kala, last night sounded awful, do make sure you get some medication for your sickness and I hope you are soon feeling better.  The bad days on the Docetaxol are pretty awful. I must admit, whilst Fluconazole kills the fungus and benzydamine numbs the pain, nothing gets rid of how ugly your mouth and sense of taste feels. In my experience you just have to wait for it to wear off. Hugs to you. X

Raitchr, what about a rucksack whereby weight is evenly distributed? Is that a silly question?

[treehouse]

Thinking of you curly. It's a big step but I am not celebrating till I feel normal again.
Hope it all goes well.
💪🏻🤞🤗

[Jay68]

Good luck for today curlyh - you'll be ringing that bell very soon! x

[WolfEE]

Carlyh - last one today 🔔💃 yipeeeeeee hope it goes smoothly x

[curlyh]

Morning...well done to all you ladies which have finished T and rung that bell either for real or imaginary...I am away in for my last T this morning...not had a phone call so assume good to go...not much sleep with the steroids last night so mind was in overdrive as usual...I am really nervous this time but I am sure I will be releved later today but dreading the se which will probably be worse but it will be for last time...hope everyone day ok 🙂

[Jay68]

Thanks H for all your really helpful advice and for sharing your experiences - it really is so helpful to have this knowledge before it happens.

I'm going to make the most of using my right hand to carry heavy bags and lift weights - as it seems it's going to have a very long rest and my poor left arm is going to have to work very hard in the future!!

I'm not too bothered about not driving - but at the school I work at they have suggested after the op and if I'm bored I am welcome to go in just to do some reading with the children - which I quite like the idea of - but it's a good 25 minute walk / 5 minutes in the car. OK when the weather is good to walk but otherwise the car is best!
J

[Jay68]

Hi Kala - being sick is the worse thing - thankfully for me I haven't been although have had nausea on lots of occasions but generally not on T - if I do, it's usually this week - 2 weeks after treatment - very strange! As already suggested, give your chemo unit a call - the nurses there are brilliant and will suggest a solution - if you are that unwell to attend for your PICC line - again see if a nurse can visit you. Why do you still have the PICC line?

I've got my first Herceptin injection this Thursday afternoon - so I'll be able to report personally about it after!!! - My friend has had 2 now - the first was a bit stingy (made her feel a little lightheaded - but she said it could have been just panic induced) - second one she said was absolutely fine - no problems at all. Apparently it's not uncommon to experience slight flu like symptoms, achy legs and she had cold sores (in nose) - but she said 1st one was worse than 2nd. As I say, watch this space - I'll report my experience after Thursday.....!!! Also have bloods taken Thursday to see if my blood ok for op next Tuesday!!!!

Usually your op is 3/4 weeks from last chemo - but your bloods have to be good.

As I've said previous Kala, this final chemo has taken longer for me to recover from - my bones ache/legs ache/fingers are painful - red feet and night time hot flushes - the list is never ending and all truly delightful!

I would add, if you're still being sick - get yourself checked out whilst at the hospital - it could be a bug or something you've eaten. Remember to up your water consumption too!

You are equally strong and a super woman - so a big hug to you too xxx

[treehouse]

Kala that sounds horrible. I woke up with the dreaded pains last night and tingling fingers. My chemo nurses made it very clear that nausea and vomiting can be controlled and I must not suffer. Please please phone the chemo line and get something. They will be able to help.
X x x x hugs

[Raitchr]

Kala. I work for local gov't so assume terms are same as NHS. You accrue holidays whilst on sick leave. My annual leave year runs April to March so you he to use or use by March but can carry over max 1 week into next year allowance. I get 18 days as work part time 3 days a week, so 6 weeks ho!s. Plus I had 2 days unused from when I went off to have op in March.

I am on 6 months full,pay and 6 months half pay, about to go into half pay this month.My option is to go back phased return reduced hours but full pay then take my hols over Christmas. Or take holidays when GP says I am fit for but then start 3 weeks annual leave before phased return, back on full,pay. This is why I have a meeting to discuss it at work next week.

Hope you are feeling better soon, nothing worse that actually being sick.

Take care

Heather

[Trisha69]

Also Kala. I was told my next 15 herceptin would be be injection but was a mix up on Friday and they seem to think will be having them intravenously. will be calling Oncology first thing. it really upset me. my mammogram, scan and appt with Surgeon is 21st Sept. My lump had shrunk after FEC no 3 by just over half so fingers crossed with next scan then hopefully lumpectomy then 4 weeks radiotherapy. can't even imagine going back to work. My energy levels are shot. let me know how u get on. big hug x

[Trisha69]

Hi Kala. if you now having Herceptin injections why have they not removed PICC or am I being blonde. I had my last Docetaxel on Friday and have too felt rough all weekend. when I did need a flush and celt unwell the district nurses cane to me without hesitation. I've been given Domperidone too. shame it's not Dom Perignon! 😉 x

[Kala]

Good Monday morning ladies. Having a bad vomiting night session which lasted most of the night. First time I have actually been so sick from the dreaded T. Really don't want to go get my line flushed today as can barely walk but both my daughters say they are taking day off work and will get me in so all I have to do is take sick bowl n blanket , bless them. Luckily my temp is not over 37.3. All I want to do is stay in bed, mahhhhh!!! How do you all manage if you can't get to hospital to get your line flushed cos you feel so crap. 

Had my last T on Wednesday so that's why I chose today for line flush as I knew by this Wednesday I would be crawling. 

How do the holidays work as I have been off since march, I work full time for the nhs and I have only taken one weeks holiday so far but my sick note will carry on till after Xmas and some if I'm not well enough to work. Can I claim the holiday back at all as I get near six weeks . I'm not planning on returning full time . Going to do  some things I never had the time to do before lol. Like walk in the park, drink coffee in the cafe, go to the pictures, go on a train, visit the beach, eat candy floss and a mega size burger with fries . All the little things I never did are going to be on the top of my list. 

My mouth tastes awful and the domperidone doesn't seem to help. Is cyclazine any better? As I have some of these too. 

My tummy is bloated and my feet are burning and the list is endless. Jeesh I could whinge for like ever. 

Today my husband was sick watching me be sick , bless him, he has a low tolerance for this type of thing so he's kinda keeping out the way, although he refreshes me with water n ice cubes and sweet tea. 

How are you all coping on these early days after treatment. Is this normal to feel so bad so soon as last time I was okay till day six. 

Seems to have hit me early this time. 

Has any of you lovely ladies had herceptin injections yet as I have had the last three in infusion but now I guess they will be in the leg for a year . Is it painful. 

Not sure when my op is as I have to have yet another MRI scan in a couple of weeks so fingers crossed . 

I feel I am almost on the same road as you jay and you are doing so well compared to wussy me . 

Anyway I hope this week goes so well for everyone, especially if your going away somewhere nice and relaxing xxxxxxxx best wishes and a thousand hugs 🤗 to all you amazing brave  super strong ladies xxxxx

[Raitchr]

J - for legal reasons they can't advise when to drive, you have to be able to do emergency stop and seat belt needs to be comfortable and you have to be confident that you are ok to drive. Practice short known routes until you are 100% happy and safe. I started by doing school run, then a 7 mile trip to local supermarket on outskirts of town until I was ready to go further afield.  I spoke to my insurance company and they put a note on my record re surgery. I could have driven after 4 weeks but left it longer as I didn't need to drive with husband being at home. My Mx was right side so had no issue with gears stick so found it easier.

After op you have to be careful lifting heavy things like shopping bags, even a full kettle was not a good idea. Also I was told to prevent lymphodema,do not put hand bag on op side again especially if it is heavy. Learn to use other arm for lifting and carrying. 

H

[Jay68]

Treehouse - Can't see your image - I'm intrigued now!

Hope you don't fall too far down the rabbit hole - although days 3-8 were the worse, I'm finding the side effects this final time seem to be taking forever to fully disappear!!

[Jay68]

H - lucky you - a well deserved holiday not so far away - bet you can't wait.

I've just had a weekend away - somewhere local and it is so nice just to have a break away from everything and a change of scenery. Got another weekend away next week, but that's going to be a busy one as it's my husband's nephew's wedding!

Funny enough,, I was only thinking about driving after the op today. How long do they advise you to refrain?

I hear where you're coming from with regard to work and loosing pension etc but as you say this experience certainly makes you realise you have to live for now.

J x

[Anniej]

Wolfee, have you any codeine? They gave that to me on chemo. Phone up your GP and get a prescripton. Deep heat is ok too. How absolutely bloody for you! X

[Raitchr]

I have a week booked in Spain Oct half term but it doesn't come out of annual leave as on paid sick leave. Hoping to go back on to full,pay and use hols in Dec then harmonised return in Jan.

Husband is looking to return to job rather than being self employed so if he does get a well paid job in next 3 months then I am considering not going back or drastically reducing hours. I may be able to leave but return as self employed temporary staff, just an idea right now as would loose pension and benefits but after the year I have to live for now.

Surgery - it took me a bit of recovery but started chemo 7 weeks from op. The first week was just a bit uncomfortable doing things but did do the exercises 3 times a day. Husband didn't let me drive for 6 weeks but I did enjoy being chauffeured around. 

H

[treehouse]

IMG_1358.PNG

Not sure if this works but a new friend of mine just found my mental image of the choppy monsters.
She read my mind 😂
Starting to fall down the side effects rabbit hole for the last time. 😱

[Jay68]

H = I'm signed off til 4 Dec - as yet don't know if got to have rads - will know once pathology report done after op. If I don't have rads I was hoping to go back before 4/12 - I only work 2 hours a day in school. I simply can't wait to get back into a "normal life" routine - although I am enjoying the benefits of being off - now I've finished the chemo. Obviously the surgery is next for me and this will knock me back for a bit - how long did it take for you to feel fitter after the op?

Do you plan to take a holiday away now?

J x

[Raitchr]

Jay, got a meeting with work on 19th Sept. Fit note until 6 Dec to be reviewed after 2nd Onco appmt in Nov. Return will be phased as in 2 hrs, 3 mornings for 4-6 weeks then 4 hrs 3 mornings for 4 weeks. Need to see Occupational Health before any phased return is agreed. Also got 3 weeks hols to use up.

H

[Jay68]

Hi Heather - I too had a painful back but only after the final chemo - I too used a hot water bottle - only lasted 1/2 nights.

Glad it's not just my legs that feel this bad. It's my hands too - bending my knuckles is so painful. I've also got a discomfort under my breast - I've had it before but this time seems worse.

I know what you mean with regard to filling up the diary - mine is the same - I've got something "normal" planned for everyday this week apart from Thurs - which is my first Herceptin injection and blood tests to see if all is ok for my op to go ahead on 19th and for bloods to be cross matched in case of any need for blood during op - all getting very close and to be honest I can't wait - I really need this bit over now!

Do you have a date to return to work yet?

J x

[Raitchr]

I had a bad back after each of my Ts. Put it down to not sleeping well and tossing and turning all night. Has gone now but used hot water bottle and paracetamol / ibuprofen.

My legs feel like I have run a marathon, hurt since Friday.

My diary is now filling up with meeting friends for lunch rather than oncologist appmts.One last week, another tomorrow, and a coffee meet up later in week. How did I have time to work before C ??

H