No one has been allowed in with me for any of mine, there’s signs up all over saying no friends/relatives allowed in the treatment rooms due to risk of infection.
@sunshineandunicorns I’ve done a bit of work from home but found it more frustrating than anything else! I can’t get proper into the thick of things so I’m just piddling about on the periphery not feeling very useful at all 
Yes, it is a space issue and a left over from Covid. I think the hospital as a whole is beginning to tighten up again because of Covid doing the rounds again.
Our suite has about 20-25 chairs and is always busy. It does make it hard to build a rapport with the nurses when you have a different one each time, although they probably all know who I am with the constant picc line dramas lol. Maybe they draw straws to take the problem child 
I had a dream one night that they gave me the nurse that pulled out my picc line and I said no, not having it, we had quite a show down and I told her exactly why lol
The nurse I had last round was lovely, from South Africa, she sat with me and we chatted and giggled, told me all about her 3 girls back home and showed me photos etc. it was really nice.
Oh man alive, how awful for you. I had heard diarrhoea was a symptom but thank you for answering my question. I didnt realise the paclitaxel was every week and your right we are so far in now and being half way through is a relief. Will definitely report side effects too x
Good luck for the 19th and agree the unknown again, dreading the symptoms and reaction! My confidence has gone completely so I feel your pain. I don’t drive much but my arms are so weak it does worry me but I’ve coped when I’ve needed to drive. Note taken on the higher dose every 3 weeks.
And yes this forum is like wrapping a blanket around us and not being alone. Yes friends seem to say and behave very strangely, not all of them but yes Ive had some beauties like that. And if anyone else sends me the fooking 
emoji and tell me to be strong or you’ve got this I cant be responsible for my reply. Shesh kebab!!! X
Oh my god I know, you’re right the hair will grow back (I’m hoping for a black Afro) and can concentrate of weight when I’m ready and the “helpful” comments that are not so “helpful” we can laugh about it on here its a release valve. Good luck with the Paclitaxel x
I am so sick of the 
emoji. I just want to reply with a 
but I doubt they’d get I mean I want them to shush.
If I have to hear warrior, fighter blah blah one more time… I feel like a child who’s just been beaten up and an adult (who I’ve been told is smart and responsible) is telling me what to do to stop it happening again and I have to take orders and keep quiet while they do most of the work, and I never quite know if they ARE smart and responsible or if it’s just that they’re bigger than me.
All my chemo nurses have been different, lovely and some more chatty than others (depending how busy they are, I try and have my treatments first thing so I’m in there befire others). Some crossovers, a previous nurse might walk past and acknowledge me or ask how I was after I was with them. One told me I was “weird” cos my vein reacted funny and created an external scar on the back of my hand (always lovely to be called weird ).
My hospital allows you to have someone help you (if needed) to get set up and ready before your treatment (mobility issues etc) but they have to leave before you actually start treatment. There’s a Maggie’s about 5 minutes from the hospital so theoretically a family member/friend could hang out there during treatment. There’s a piano in the reception and a garden/conservatory too in the hospital if you don’t want to leave.
nicnac, sharlou, sunshine, luck duck and All,
Thanks for sharing; I am feeling lonely too sometimes and so sad, and scared and bruised…
While many of us have support of friends and family it seems clear that many people love us but are struggling to understand what we are going through and in how to support/iapproach us. So there are many good intentions and we get ‘brownie points’ when we seem strong, making out we are ok, sounding hopeful; or we get encouraged with ‘positive vibes’, thoughts sent or ‘wishes for a speedy recovery’.
All coming from a place of good intentions, but vmcan actually hurt when you are struggling or are feeling wiped out in the eye of a massive storm and your live has come to a terrifying hold… maybe people need a guideline saying - there is no bloo… speedy recovery for anyone suffering from cancer - ? Please understand it is a nightmare; horrible onslaught of a treatment, and trauma to body and soul for thos who go through it.
So all this- ‘stay positive’ and strong, do this, that, might be well-intended but can be quite unerving - and even toxic actually.
I try my best not to upset any friends and family, but I also decided to stop pretending that I’m okay when I’m actually not. And I won’t pick up the phone if anybody calls me in the days after chemo, unless I really would like to talk to them. And Making an exception for my young son as I don’t want to scare him…
We are half-way or half way nearly, my third TC (Docetaxel/cyclophosphamide) in on 19.11.
First cycle was bad, side-effect and neutropenia wise, so ended up in hospital with fever and some light infection but no allergic reaction.
The nurses are really lovely and partner is waiting in waiting area…
Second cycle was tough too but bit less so, nausea, musle/joint pain and Insomnia worse, and fatigue but got better after day 8/9 and no fever/infection. Things improved after the 5 filg. boosters finished . Strange taste of food stays and dry mouth remains and some hair shedding but got some energy back… finally…
Everyone reacts differently- but if your first week is tough, when are on docetaxel you can have hope that things will improve after week 1.
This place is a blessing (and I am not even religious 
) and ferls ‘home’ in a good way - and feels like a much needed source of togetherness and understanding and support is a very tough time for all of us.
I am trying to imagine life in spring next year and think of visiting sunny places again.
And someone suggested to think of a gettogether when we are done with the horried chemo and had some time to rest after. 
I would love that! And would - if this seems a good idea to some/many of us - be happy to think about nice places we could meet at. Maybe by the sea… always a loveplace to be…?
Any thoughts/suggestions very welcome…
PS: I am 12 days into my cycle 2 now and realise I have some more energy after very bad/depressing first 8 days.
Love and a big hug to all.
Rose xo
PS: it is sunshine forecast tomorrow- and I shall try to get out with my partner’s help before meeting my oncologist for cycle 2 review and cycle 3 planning and will try to take some pictures in the sun and share here. Need to distract myself a bit. . So depressing that we seemed to have lost that sun 
for 2 weeks now. Bloods next Friday- 
I’m up for a get together @rosegarden1 Something lovely to look forward too. We’ve been theough a massive life experience together and recieved and given support through one of our hardest life journeys.
I’m in N/W London ( Ruislip, near Wembley ) Maybe we need to see who’s interested and where we all are and where would be the easiest place to meet / access from all over.
Hi all, I’ve caught up reading again, and had so many things I wanted to reply to but my brain has turned to mush (and I find the forum quite hard to navigate!) so just sending this little message to check in and say hello. I’m having a better cycle 3 than cycles 1 & 2, though I’m still feeling pretty grim overall. Should start to pick up tomorrow or Tuesday…onwards and upwards.
Thinking of you all tonight, go gently.
remember to arrange the meet up via pm or private WhatsApp group don’t share details on this main thread, keep safe 
Shi xx
Thanks you ‘Lucky Duck’ - I agree with all you are saying…and we really deserve something to look forward to together- like a big joyful (re)treat.
I am in the Midlands and like traveling usually… maybe somewhere near London could be lovely. Let’s Keep this in mind. And see who likes to join us. Love, Rose l
Getting together once we are all done with this part of the treatment is a lovely thought.
So many shared experiences, wisdoms, tips, sorrows and fears and shared joy too here… a rare place of kindness and understanding - that makes one feel less alone somehow - facing this tricky time.
And I’m sorry for my last post. Got a bit carried away reflecting on it all. So It really got far too long. It’s a bad Habit of mine writing to long and detailed… and I don’t want to wear anyone more out than we already are. . Love (prevails) xx Shi, thanks, good point, maybe best we keep or pseudonyms here. And I can message people who are interested privately individually so we can create a whatsapp group…
Glad it’s not just me that finds it hard to navigate the forum! I tend to scroll right down to the end then back up to the last thing I’ve read. I probably do still miss bits though.
I”m glad you are having a better round 3 and hope you get a really good week in before your next round.
I’m round 4 tomorrow and the first of Docetaxel. Started on my steroids today and forgot the dose had doubled on my first so had the smaller dose. I’ve corrected it now but will mention to nurses tomorrow.
I’m ignoring it, had a lazy morning in bed 
followed by a short walk to say we have actually least the house and got some fresh air. We’ve just taken in a Sainsbury’s delivery while I cook a late roast chicken dinner, then we are going to watch the new Twisters film that we bought in the dark with ice cream.
Feeling tired, still on the back end of this cold.
I can catch up with Strictly tomorrow ( I actually go to dance classes, but haven’t been for so long now. I dance Latin, Cuban Salsa, and it’s all twisting, hard on the shoulders and with my hyper mobility, my left was hurting and my reconstructed shoulder on the right not being so strong, I was on a bit of a break. It will be my focus after all this to get back to class and what I love. I’m really missing it. I’m the 5th judge lol, Craig normally repeats what I say just after I say it.
What are you girls all going to be focused on getting back to once all this is over??
I guess we’ll have to share at least one phone number or email address on here to get that started though
Sorry, yes, I’ll keep to psyndonym in future. Was t suggesting it had to be London, just that I was wondering where we would all be coming from. I won’t drive on a motorway, gives me massive panic attacks, but as I’m around London I have great transport links. May not be the same for everyone else.
I’m a few days in from my 3rd and last EC so struggling to keep up with you all but I’m here in spirit honest xxx
On to docetaxel next - please let us know how you get on on. Good luck to those on treatment this week
Love to all- we can do this - I might be more with it in a few days xxx
Many thanks lucky duck. Lovely to hear that you like dancing. I hope you can get back into it once things are finished and you recover.
I like it very much too, but haven’t danced in many years now and guess what - I’m also cooking a dinner it’s a lamb roast with roasters and a potato gratin
I don’t taste things very much so I try to avoid to put too much salt in it, but we felt like cooking a roast dinner… enjoy the twisters movie end. Yes it would be lovely to start dancing again. I also like the strictly and walking and travelling… good luck to all who have treatment tomorrow… xx
And I think if people let me know he here if they are interested in a meet up after end of Chemo treatment and join a whatsapp group
i can then send private messages to everyone here on the forum and sharing my phone number in the private message you can whatsapp me and I can get a list together. Shi I hope that’s alright?
Lucky duck someone can set up the WhatsApp group and everyone can private message their number over to that one person. To private message just click on the name if you’ve not used before, that’s what our oct17 gang did and we arranged our meet up that way Shi xx
Many thanks Shi and lucky duck,:0)
I would be happy to set up a whatsapp group for those who like the idea of staying in touch beyond our Chemo treatment and meeting up somewhere nice next year when we are done with the Chemo treatment.
Maybe in late Spring/early summer as am aware many will move on to other treatments/sugery.
We can then use the group to think together about a good place and time for a treat post-treatment get-together, gathering… . Something to look forward too.
So please feel free to message me privately- by klicking on my name (as Shi explained) , and send me your mobile phone number details and I can add you to our getogether/keep in touch whatsapp group.
So far it is Lucky Duck and Rose… 
Many thanks to Shi -our Community champion for inspirational and realzhelpful posts too.
Love to all
Rose xo
What a brilliant question - what are we all looking forward to when all this is over?? For me, I’m looking forward to hiking and camping and getting up on top of hills/mountains again. I’m hoping to get into fishing, and I want to get out paddleboarding, biking, running, and swimming in rivers near us. I’m also really looking forward to getting back into the adoption process that was so rudely interrupted by my diagnosis. And honestly I’m just looking forward to having normal, everyday pleasures like a nice meal or a visit to the pub without them being either impossible for me, or marred by nauseau, exhaustion etc.
Our Oct17 gang stuck together on the chemo thread even though we went off and had rads after chemo and some had to have operation then rads but we used our chemo thread to get each other through everything we had our meet up in the August the year after and we still talk daily on our WhatsApp group and meet up for weekends as often as we can something that was trying to harm us gave us un breakable friendships Shi xx