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.
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.
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
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!
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.
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.
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?
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.
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.
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
@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
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.
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.
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.
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.
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.
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.
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.
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.
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
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