April 2018 Chemo Starters

[Dorabel]

This is an appalling situation to be in, Christine.  I’ve met with confusing stuff at hospital every time but nothing like as bad as what you are going through.  If the local hospital can’t help, I was wondering if your GP might get onto the case and chase up better care.

A community nurse came every week to flush through my picc line and managing your drain would seem to be something similar that a community nurse could do.  It’s awful that you are having to go through this in addition to the surgery you have just undergone.

[Christine Rim]

Local hospital that should have said.

[Christine Rim]

I will probably make do and find food bags, tape and a measuring jug. A taxi up there and back would be about £70 as i could not cope with stairs to the tube stations. I might try my lovsl hospital otherwise.

[Gygi]

Poor you Christine. They taught me to change the drains and gave me extras. Would you consider going up there? Just for peace of mind.

[Christine Rim]

The operation was carried out at the Royal Marsden in Chelsea and they have no direct dial numbers so you have to through the operator. They are not helpful as i had problems before when i was supposed to phone the day before i was admitted for surgery and was given the name of a department to ask for but either it had changed its name or my instructions were wrong as i wasn't put through where i was asked to be. The hotline assured me that the lady i needed to talk to would call me tomorrow and the I do have the name of someone else recommended by the consultants PA that is based at a different hospital he works at that will help. Once again though this should not be this hard. I don't mind so much that it is till there but it is more that i don't know what happens now. I have a bag to empty the drain into tomorrow then i have nothing and i am on my own to figure out what to do.     

[Gygi]

Maybe if you still have concerns tomorrow ring reception and get them to put you through xxx

[Gygi]

Awh poor you Christine. It was a bit quick to have the drain out they were being very optimistic saying it was today. I had a nurse come eventually home to take the one out I had as it took quite a while for it to not have lots in too and she put it in the household waste. Better to wait although totally unfair they left you in the lurch. Big hugs.

[Christine Rim]

Emotional again today as when i left hopital yesterday a plan was in place and i had my instructions but if no one else knows them you get stuck. Reading on the drain looked too high to have it removed but i phoned in anyway as it was down a bit. They were supposed to call back and confirm either way and the plan going forward but they didn't. Called the Marsden asking for the person they told me to on the hotline and got an out of hours recording even though it should have been mand. their phone system is rubbish. Tried the number for the ward they gave me yesterday and they said they couldn't help either and put me back to the hotline. By which time I was in tears that again i was on my own with no help. Eventually i got the confirmed No to drain removal as i had expected but still no plan as to what i do now. I have a bag to empty the drain tomorrow but nothing else and just the promise of a call at some time tomorrow. Do they not realise what we have gone through and messing us around when we are vulnerable is not on.

I emailed my consultants PA and i have an appointment with him on Thursday but what happens to the drain and its contents before then i don't know. I did ask waht i should do with the bag of blood etc and the hotline said put it in the household general waste bin. Is that really right?

Rant over. Off to have a cry   

[Gygi]

Hi everyone, just on my way home on the train from herceptin number 4. Got a bag full of meds (blood thinners for that pesky clot) so I'm not allowed alcohol yet. Congratulations Michelle for your daughter and your op and Christine too. I'm sure you know to be kind to yourselves xxx Dorabel I've gone clothes mad and been buying things I shouldn't in the sale for work in September. Want them to comment on my clothes rather than keep telling me how well I look lol. My hair is growing Michelle. The bald patches are filling in although I wear a hat when I got out. Did lots of research for hair growing stuff and decided to go for a coconut shampoo and conditioner from tk max designed for cancer patients. Not going to swim either till I reach 6 weeks post chemo. Need to find a good swimming hat too. Feeling a lot better going to take antisickness this time in case I get the sickness again. A quiet week getting some work done for school and I'm going in Thursday for results day. The rest of the department are all off in foreign parts. Going to try and get to the seaside one day soon but I'm still taking it easy as fatigue can set in or just lime last night I don't sleep till 5am! Saw friends last week but it's a bit boring as I'm just going over what happened in the past and want to look forward for a bit. Taking #lovely husky out every day but he is a handful. A smaller dog would be so much easier lol. Take care and hope you all have a good week xxx

[Christine Rim]

My first whisky that tasted like whisky once more was amazing

[Dorabel]

This is good news about your surgery, Christine.  It was far more extensive than I’d realised, so I’m glad you were made as comfortable as possible and you are back home now.  I hope your recovery goes well after the trauma of surgery.  Early days.

Like you, Michelle, I am obsessed with my hair growth.  I wear jeans & t shirts most days & I don’t think this will change.  I think this fashion thing is just a passing phase.  Perhaps my mind is telling me it’s time to move on & leave all this behind.  Hands & feet that don’t hurt, wine that tastes like wine, now that would be a real treat!

[Christine Rim]

So glad all looks good for you Michelle. I always think that if something is wrong they would have told you long before the 3 weeks are up so no news is always good news. Great your daughter got what she wanted too and you can both look forward.

They did let me home today but the drain is still in but unlike you Michelle it is left to me to empty it and measure the contents before phoning in the results. There was talk of a district nurse but the this will only be done if the drain can't come out tomorrow. I have an appointment with the surgeon who did the mastectomy tomorrow which i could cancel if i wasn't up to it but i am sure she will take out the drain if the numbers are right. below 40 is the magic number and this morning was 60 so hopeful. The one i have left is in the abdomen as the other 3 have been removed.

The operation when pretty much to plan except he did have to go through the stomache muscle on one side to get the blood vessels  but i knew this was a risk no matter what the CT scan showed. I didn't react well to the morphine pump so stopped that as soon as i could. It made me very sick, woozy and spaced out which is not great when you have had surgery across the stomache. Once i came through the first 48 hours the nursing staff on the ward were brilliant at looking after me and keeping me comfortable. The plastics Consultant and all his team were in at least once a day and i hate to think how many people must have been in theatre. All very considerate and informative.

Now i have two boobs again and it feels odd considering i have only had one for 17 years. They are firm but still have tape and dressings on so will wait to see them proeprly at the end of the week when the dressings are taken off and the wounds checked. I am really pleased with it so far but it is a very big operation and took a lot out of me. Still lots of adjustments to go but that is the main bit all done now.

Thank you for all your good wishes and hope you are all doing well. After chemo had ended my eyebrows disappeared but they are now growing back. It was very odd but i have heard others losing hair after the chemo finished.   

[Michelle21]

Christine I’m so pleased your op went well and you are physically well. There has been a lot to take in and a big build up to surgery so no surprise you are feeling emotional. I would say just go with it let the tears come if you have to, they are just emotions and they will pass, hopefully leaving you feeling better soon.

I am 3 days post op, still got the drain in. I could have it for anything from 5 days to 2 weeks. It is uncomfortable so I’m hoping it will be out soon. The nurse is coming each day to measure the fluid released. I am looking forward to having the drain out and the clips out which will be in a weeks time but know that like in chemo I just have to be patient and go through each day.

Dorabel Thanks for your kind words, also your description of the drain is hilarious! I haven’t become obsessed with fashion but I am obsessed with the growth of my hair. As you know I cold capped but still developed bald patches. These are growing back but I find my self staring at them every night trying to calculate how much it might have grown since I last looked! I’ve never spent so much time on my appearance. I think for me i want to look like my normal self again as soon as possible. It’s as if I don’t want people to know I have been through this, even though all my friends do know. Go for it Dorabel, but new clothes and get a new look if that’s what you fancy. I think we deserve to treat ourselves after all we have been through xx

[Dorabel]

I’m very glad that it went ok, Christine.  But surgery is an assault on the body and the body feels it as that.  No wonder your emotions are all over the place.  I hope that the staff are kind and can make you comfortable tonight.

[Christine Rim]

Just a quick post as i am still in hospital. Physically all is going well but emotions all over the place. Waiting for last drain to be removed but keep seeing it fill and dreading yet another night of no sleep. I am sure it is worth it but just need to sort my head out.

[Dorabel]

Congratulations, Michelle, on your daughter’s wonderful results.  You must be so proud of her!  Yes, she is amazing - and so are you.  I’m glad the surgery went to plan and you are back home again.  The drain has all the charm of a ball and chain but it won’t be for long (I was so glad to see the back of mine).  The 3-week wait is a pain & I hope the horrible chemicals have done their job & zapped everything bad.

I’m encouraged that the disgusting chemo taste fades after about 4 weeks.  In desperation I tried eating my favourite junk food today (crisps, chocolate..) the taste was awful, just not quite as awful as a week ago.

Something very odd is happening to me.  I seem obsessed with clothes and fashion, which is not usual for me.  I look like a slightly fuzzy jelly baby at the moment, so not a lot to work on.  Perhaps I just want to look a bit better than I do now.  Or maybe I want to look quite different as that’s already happened.  Has anyone else felt like this?

[Michelle21]

Hi everyone

I am pleased to say my daughter got into her uni choice and got better grades than expected! I feel so happy and proud of her, especially as she did it all whilst i was dx and having chemo. She really is amazing. Anyway enough of my showing off!!

I am home after the op and feeling ok. I have found it sore around the drain area but that seems to be a little better every day. I haven’t managed to put a bra on yet but feel that I should do that today for the support. I have a 3 week wait now to find out the pathology results but keeping my fingers crossed that chemo, Perjeta and Herceptin have destroyed those nasty cancer cells.

I am now 4 weeks from my last chemo and obviously have my op to recover from but I am pleased that the battery acid mouth taste has finally gone and taste buds are back to normal. My hair is growing back in the patches that thinned but it is also still falling out in the thicker patches! I don’t think I’ll be running again for a few weeks but when I ran a couple of times post chemo my performance was far below normal, even a normal of not exercising for that long I wouldn’t have been as bad as this! Yes chemo does set us back but we will all get back to our pre chemo selves and will be even stronger for having gone through all of this.
Sally I hope session 7 goes well on Monday with minimal SE’s, you really are a trooper going through 8 chemo cycles.
Gygi glad you are begining to feel more like yourself and getting out and about again. Has your hair stopped shedding completely now? Do you remember when it stopped?
Dorabel keep up the gym it will get easier, you are still early days.
Christine, how did the op go? I hope you are feeling ok and are being well looked after.
Fiona, how is life post chemo?! I hope all is well.

Love to you all xx

[Dorabel]

Thanks Gygi re. how long it takes for the effects of last chemo to fade.  It’s not quite 2 weeks since my last one and I’m already trying to do the things I did in what used to be normal life.  A gentle session at the gym meant I had to go to bed afterwards.  Infuriates me when I feel so feeble.  But my hair is growing again!  It’s a faint white fuzz about 3mm long and when I’m on my own I keep stroking it in disbelief.

[MrsPardaeva]

Hi Michelle, sending lots of positive thoughts for tomorrow, you'll do great I'm sure... and fingers crossed for good results for both you and your daughter! ... I'll be thinking of you x

[Gygi]

MustardandGrey hugs to you too hope today is going ok

[Gygi]

Hi guys how is everyone? Thinking of you Christine. Hope recovery is going well. I went to a Look good feel better make up workshop yesterday at the hospital and loved it. Highly recommend it even though I hardly ever wear makeup (first time in 2018!) Off to meet a friend for lunch. Going to buy a 2019 calendar to put all my dates in. Now the weather has cooled down I'm out more and feeling much better. Just really achy legs today and need to pace myself. Hope your daughter gets what she wants for uni tomorrow Michelle and will be thinking of you. Dorabel Fiona it's been a month since my last chemo and only just beginning to feel better so I guess it's still affecting you. Hope you are recovering well and Sally too. Take care Gigi x

[Michelle21]

Hope Monday goes well Sally, you are near the end now and can see the light at the end of the chemo tunnel. I have just finished chemo, have surgery on Thursday and rads after so yes we are fillowing a similar path. Let us know how you get on with the remainder of your chemo x

[sally65]

Hi I seem to be in the same boat. I have session 7 out of 8 on Monday  ( 4 FEC and 4 Docetaxol)  and each time I am gettin more exhausted. But what is going through my brain is the thought that this  part of the treatment is nearly done. 

I only have surgery and radiotheropy and hormone treatment to go, so I am able to look forward to the New year and  putting this one in the history books.

 Sal x

[MrsPardaeva]

Hope everything goes well tomorrow Christine, I'll be thinking of you. X

[Michelle21]

Thanks Christine and all the best to you too. X

[Dorabel]

Thinking of you tomorrow, Christine, and hoping they take good care of you. xx

[Gygi]

Hope all goes well in your op tomorrow Christine will be thinking of you xxx

[Christine Rim]

All the best for thursday Michelle. Hope all goes well for you and your daughter. 

[Dorabel]

It’s not laziness at all, mustardandgrey, but your body demanding the rest it needs (and thanks for the congrats!).  You’re absolutely right, Michelle: exercise really helps but it’s not always possible.  Walking from bed to loo and back again (over and over) has been all I’ve managed in the last few days but I’m optimistic that the worst is past now.

Good luck with the next treatment, surgery or last chemo.  xx

[Michelle21]

Thanks Dorabel I will let you know how I get in xx

[Michelle21]

Hi mustardandgrey

I didn’t suffer with fatigue but did get more tired towards the end. I had 2x FEC and 4x T. I don’t want to sound preachy as I know there is a lot of luck involved but I walked 3+ miles almost everyday of chemo and I have read that this helps with fatigue. I was very lucky with my SE’s and likecto believe the walking helped. Good luck with the remainder of your chemo x

[mustardandgrey]

@Dorabel - thank you!

It's so debilitating, this fatigue, and it just makes me feel so lazy as I've lost the oomph to do anything really once it hits.

And congratulations on completing chemo xx

[Dorabel]

Hello Mustardandgrey 

Don’t know if this helps.  I’ve just  had my last docetaxel (3rd of 3, 6 chemos in all) and the side effects have intensified.  For two days it wasn’t so bad, then I turned into a shuffling wreck.  The fatigue is unbelievable. I’ve worked out that, even after the week and a half it takes to get back to some sort of normality, I can do one thing in a day and then I have to go to bed, just as you describe.  It’s not the same for everyone and I hope you have a better experience.  I’m buoyed up by knowing that the hated chemo is finished.

Waiting for surgery on the 16th must be very hard, Michelle.  It doesn’t help when appointments don’t go to plan (I was being given the runaround last time at the hospital and told them Alzheimer’s descends on me the moment I step through the door).  It’s a shame there was no acknowledgement that you were having your last chemo.  It’s a huge landmark after what we have been through, even if it’s just the daily grind in the ward.

I’m surprised they didn’t take blood from your port, Christine.  You made it clear that you had had surgery and staff at a cancer hospital are supposed to know what they are doing.  I always had to ask for blood to be taken from my picc but that did happen.

I’ll be thinking of you on the 14th & Michelle on the 16th.  

[mustardandgrey]

Hello, Ladies!

I've just popped over from the May '18 starters.

I've had 5 out of 6 sessions so far - 3 x FEC and 2 x Docetaxol, and the final session is on 20th August.

Side effects wise, most seem confined to the first 7 days or so, but in the last month I've just been more and more tired and the last week or so even the smallest things are wiping me out later.

I wash the dishes and - bang - shattered!

I go for an appointment/coffee with friends and - bang - I come back and sleep solidly for two hours!

It happened again today after just a couple of hours out shopping.

So I was just wondering if this amount of fatigue is just a normal part of coming to the end of chemo?

As it's gradually got worse each cycle.

Sarah xx

[Christine Rim]

Firstly sorry i got my message wrong yesterday as i forgot that Fiona stopped chemo. 

Michelle it must be a worry for you too and yes i am trying to keep myself busy and my mind of it all. I plan to do a cleaning blitz on Monday and have advised my husband to keep his distance as he will be shouted at but he knows what i get like when i am worried so he will be ok. Glad the Herceptin went well too and all the best.

x 

[Michelle21]

Hi Christine, I had my first herceptin injection yesterday. She administered it very slowly and it wasn’t stingy at all thankfully. However last night and still this morning my leg feels bruised and stiff in the area of the injection, There aren’t any marks or bruises on my leg. Have you had this? If so how long does it last?
Sorry to hear you have so much on your plate with family worries. I’m sure it doesn’t help with the nerves. I’m feeling pretty scared myself especially as it is my first op so I’m not sure I can offer you much comfort. For now I’m trying not to think too much about it. X

[Christine Rim]

I went for my herceptin injection today and a different nurse gave it and the sting was much less. Not sure if it was just that my body is more used to it or she may have just administered it slightly more slowly. I mentioned the blood tests taken from my arm after i had told them i had had surgery in both arms and was told it shouldn't have been done. One of the hospitals is linked to the one i went to today and it was decided that they needed to report it and some re training would be needed. Apparently they should only use my arm if i give permission and sign a consent form. It was in a cancer hospital so there must have been some one there trained to use my port or failing that it should have taken from my foot, as it has been done twice before.

Hope those who have finished chemo are enjoying it and that Fiona is counting the last few weeks to the end. I think you still have three weeks to go as you said end of August but I may be wrong or things may have changed. My chemo brain still seems to make my memory bad. I need to write down my questions for doctors etc or i forget them.

Yes my op is next tuesday (14th) and I am scared. I have the added stress of my elderly father having a hip replacement a couple of weeks ago and my mother being frail. A new emergency call system when she falls failed on its first need but luckily she found the manual emergency button to call for help. My sister is dealing with it together with her sick dog and a mother in law with early stages of dementia. she is stressed and i can do nothing to help.  

All the bset for the 16th Michelle and hope you are feeling better Gygi.

xxx

[Michelle21]

I love the battery acid description Dorabel! I’ve still got that going on but unfortunately it’s not slowing down my eating! I glad your unit gave you a little cheer, no when said a word to me in mine, not even to wish me luck which was a little disappointing. Never mind I was just glad it was done. I have radiotherapy too, in about 6 weeks time.

I have had my pre op assessment today, apart from a lot of waiting around in the wrong place for an hour as the trainee Dr had gotnit wrong, it went well. I feel more prepared for 16th.

Am I right in thinking your surgery is on 14th Christine? Good luck with it and let us know how it goes.

Hope everyone feeling fitter x

[Dorabel]

It’s great that we’re all through chemo now.  There was a little cheer for me yesterday when I went out of the ward punching the air.  There’s still radiotherapy & hormone therapy to come but this horrible chemical poisoning is done.  (Just sore hands & feet, food tasting like it’s been cooked in battery acid, fatigue for a week or two.)

Good news about your pre-op examination, Christine.  I hope the nightmares fade & you get more restful nights.  It’s a lovely feeling to get rid of the paraphernalia of chemo delivery, even when having it has been helpful.  You must be glad your port is going.  I was extremely grateful for all the pain I didn’t have to endure because I had a picc line but I like having my arm back.

I hope the UCAS information helps, Michelle.  You have enough to be going on with as it is.  Good luck to your daughter; I hope all her hard work (and your support) have the best outcome.  Most of all, I hope your surgery goes brilliantly on the 16th.

[Michelle21]

Good that your pre op assessment is done Christine and that it all went well. I hope you get to grips with the injection. I have my pre op tomorrow, I feel a bit nervous, I don’t know why, probably because I still don’t feel comfortable in hospitals despite the amount of time I’ve spent there in the last few months!
You are right Christine UCAS do release the university acceptance early, usually by 8am. That will be great as long as she gets a good result. I just have to face there is nothing I can do about it now.

We have all had our last chemo’s now and are coming out the other side. Three great big cheers for us! HIP HIP HOORAY!! X

[Christine Rim]

Great news Dorabel. Time to move on from that time and get your body back to being more normal.

Michelle as far as i remember the UCAS site allows you to access the University acceptance before the results are provided. My daughter did hers a few years ago so it may have changed but all the best anyway. Always a traumatic time and i hope it is good news. That will also give you something to concentrate on other than the surgery.

I had my pre op assessment today and all seems good. Lots of waiting around and I also I had to have a before photo taken on my breast and tummy. I was going to do that for my own records anyway. It does make everything feel very real and I am already having the nightmares and sleepless nights but it is raining so perhaps cold weather help.   I have a blood thinner to inject which goes into the fat in the top of my leg. I guess i will only know when i do it how it works but it is not easy to pinch enough fat to inject straight down. I am sure i will sort it. Looking forward to getting rid of the port too.

I thought blood wasn't suppose to be taken from my arms but two hospitals have now insisted on doing this. Anyone else had that?

All the best to everyone. 

[Michelle21]

Winter is a long way off Dorabel, get through the next 3 weeks and then everyday you will feel a little bit better and a bit more like you again. You will be wearing boots for winter! Is chemo the end of treatment for you? X

[Dorabel]

Thanks for this kind message, Michelle.  I still feel euphoric, even though the expected side effects have started.  

What a shame your next appointment is on the 16th.  I hope your daughter’s results are good so that she is happy when you get back from the hospital.  This treatment makes few concessions to ordinary things, like living.

I’m impressed by the park run.  My knees aren’t up to running any more but I do enjoy walking.  My hands and feet have started hurting and I’m wondering if I’ll still be wearing sandals in the snow since closed shoes are too painful.  Don’t care any more.  Picc line gone, gym soon, swimming even.

Hope all goes well on the 16th.

[Michelle21]

Great news Dorabel, it’s a lovely feeling starting to get yourself back isn’t it? I hope today runs smoothly and the next couple of weeks too.

I have been given 16th August as my date for surgery. This is the worst date for me as my youngest daughter will get her A Level results then. She’s already had to go through revision and exams with me going through all of this.
Ive managed to delay being admitted from 7.30am to 9am so if she gets into her chosen uni at least I’ll know beforehand but if not I will be leaving my husband to sort it all out, and my daughter will be upset. I will just have to keep my fingers crossed tightly.

Other than that feeling good, I even went for a run on Saturday. I did a local parkrun. I couldn’t run the whole 5k but didn’t do too badly. I will try and run a few more times before 16th. Even though I managed to run I have noticed I’m a lot more tired this cycle but hopefully that will get better.

I hope every else is doing well xx

[Dorabel]

Yaay!!  Last chemo today.  Even though I know what’s coming, I still feel euphoric.  Picc line gone (I’m grateful for having it but glad it’s out).  Am already wondering when my hair will start growing back.  It’d be nice to look in the mirror and recognise myself rather than the hairless hobgoblin I see at the moment.

[Michelle21]

Thanks everyone! Enjoy the wedding Jencat and meeting up with the Oct ladies.
Christine to celebrate we are planning to go to the Cotswolds on Sunday for a peruse around the shops and lunch x

[MrsPardaeva]

Michelle that is the best news... Really wonderful to hear that.
Thanks all for your kind support with this pain and Christine, that's really helpful on the endocrine experience, thanks. As the nurse said yesterday, it's your chemo and it's preventative for belts and braces but if it's impacting the healthy me then I should go with the onco and stop as I've had a lot already. So, that's what I'm going to do.
Next stop radiotherapy then endocrine.

Hope the sickness has subsided Gigi and enjoy the wedding jencat.. It's a lovely day for it

Have good day all and thanks as ever for being such a great group x

[Christine Rim]

Great news Michelle about the shrinkage in the tumours. You must be so relieved. Surgery does sound soon after the chemo but i am sure you will feel so much better to have the lumps removed that the sooner the better. Hope you have something nice planned for the weekend as a small celebration for how well you have done.

All the best to you all 

[Jencat]

So pleased to hear your good news Michelle x

Thank you for your pm x I will reply to you soon x I'm off to a wedding today and tomorrow a group of us from the Oct thread are meeting up! x