Keyfeatures - great news that all is okay. Shame about the antibiotics and more SE to expect, but we are all good at dealing with SE now aren’t we:)
So glad you didn’t need to remain in hospital. Welcome back.
June22
Hi - I’m in the October forum but actually started chemo in September so I thought I’d post here…
Quick question - a lot of people are saying ‘my BCN’ - do you mean you have a breast cancer nurse assigned to you? If so - where/when was your BCN assigned? I’ve met nurses at the onc clinic and at the surgeon’s office - but as far as I know I don’t have anyone assigned to me.
I’ve been thinking that it would be good to have a single point of contact - does your BCN fulfil that role?
At the moment if anything is bothering me I have to decide whether to call the oncology team, the surgical team, my GP, the oncology acute unit at the local hospital, or the nurses at my insurance company - it all seems a bit random!
Hi pegglass
Wecome to the September ladies. My bcn wasintroduced to me at the meeting confirming diagnosis. She was great when i was going through surgery but havent heard from her since starting chemo ( 2nd round on monday)might be worth giving Macmillan a call as they might be able to help too.
I know what u mean about so many people who can helP, i think in your position I’d go with the helpline to your hospital.
Mine has been fabulous with e and everything is in place for the 2nd one. I have enough mouthwash to bath in, should I feel it necessary!!!
Where are u up in treatment? Xx
Thanks Stephie
That explains it - at my diagnosis the consultant apologised for the absence of a BCN - but she did introduce me to one later, but by then my head was in a whirl and I may not have taken in all the details.
I have had cause to use the ‘hotline’ at the local oncology unit (though I am not being treated there) and also the on-call nurse at my chemo provider. In the end the chemo provider passed me to the hospital, where I had excellent treatment. It seems that private healthcare is only provided up to the point where things start going wrong!
Hi Pegglass - I know an assigned BCN is standard practice for NHS treatment, but it sounds as though you might be private since you mention insurance so maybe this varies for private patients. I’d also say BCN usefulness also varies. I haven’t spoken to mine since July. Since I’ve moved on from initial diagnosos and surgery now I generally contact the chemo unit or oncology on-call doctor if there is something I need to check up about.
Hi girls
Sorry to hear about your chest troubles keyfeatures - glad the x-ray came back good. I know what you mean about being paranoid about secondaries on the lungs. I have been feeling kind of breathless for a while now and I keep stressing over it. My onc doesn’t seem concerned after listening to my chest and said that breathlessness is a common side effect but it’s so hard not to worry…
Well, I had my third chemo on Thursday and it didn’t go so well as the first two. I felt really rough the next morning and was advised to come back to hospital. It was the right decision as was violently sick in the car on the way there and got hooked up to a drip and anti-emetics once at the unit. After sticking various needles in me (oh i do love being a pin cushion ) and running some tests they said perhaps I had a viral infection (which in my experience is what medics always say when they don’t know what’s wrong with you).
Managed to get home that day and felt ok pretty soon after although wiped out. It wasn’t much fun though and i hope it wasn’t simply a bad reaction to the chemo because I still have another dose of EC to do. I’ll be careful to keep my fluids up next time round as they found I was really dehydrated when I got to the hospital.
Is anybody on here doing eight cycles of chemo? I’ve got one more EC then four tax to go and am really hoping am not a lonely voice on here by myself come the new year!
sending hugs to one and all,
sx
Hi September Ladies
Sorry I have not been on here for a while, but have just cuaght up on all the posts.
I am really sorry that some of you are having such a rough time and hope that things improve very soon.
I am due to have my third, of four, EC on Friday and have to say that, whilst the second was not as bad as the first, I am still not looking forward to it; I keep reminding myself that it will mean that I am more than halfway through the EC regime.
InShock, I think I may be the last person to leave this group as it is possible that I will not have my last Chemo until the end of Feb. t the moment we are talking about whether I will have 4 x fortnightly Tas, or 12 x weekly; the advantage of the latter being that you get lower doses at each session, so the side effects are less AND you can Cold Cap still. At the moment the cold cap is having a reasonably positive effect, although my hair is a LOT thinner than it was, it is still all over and exists.
Keep up the positive thinking everyone, I am sure it makes a big difference to how we all feel. Here’s to all the butterflies that will be flying next Spring.
Good luck to everyone.
Liz x
Hello everyone. Well. I’ve been struggling a bit today. Hoped to get out for a short walk but don’t think even that is going to happen. Everything feels like hard work mentally and physically today. My throat is getting sore and I know I should be drinking more water (can relate to your dehydration InShock) but really have to force myself to do so. Getting a bit down but trying not to dwell on it. I think it may be these antibiotics, they messed my head up last time I was on them. Taking them until Friday so 3 more days to go.
Hi all - just thought I would check in and see how everyone is doing. I am now day 7 after 3rd chemo and feeling myself again. Took a bit longer this time but not too bad. Just keep thinking I am half way through and it has gone really quickly so hopefully the next half will be the same. Still hanging on to a bit of hair so at least if I wear a hat it looks ok but my wig is used daily for outtings to the shops etc so I dont scare too many people. I do have a fear that when I go on the escalators at Westfield shopping centre my wig might come off and jam them! When I go into the shops I feel like the security guards are looking at me thinking she looks well dodgy in that disguise and they seem to watch me all the time , maybe I am a bit paranoid or just overtired…
Hope everyone is coping ok and clinging on to normality and a sense of humour as I feel like I need it to carry on.
Take care
Lol
Like Lollo I’m just checking in too. Had my 3rd FEC today and the cold cap was soo painful this time. I’m now home watching TV and I’ve developed a very unhealthy interest in watching the Real Housewives of NYC. TV at its trashiest!
Does anyone attend the Haven in London? I have an appointment there in 2 weeks but was wondering what therapies they offer and what therapies other people have found helpful.
Hope everyone is ok x
Hi sukiem, I’ve been to the Haven. So far I have had 3 counsellng sessions and a couple of aromatherapy massages. The massages were both excellent and it’s been good to talk about some things with an ‘outside’ person. It’s a lovely place too, although the opposite side of London from me.
I’m currently one week post chemo 3. Had a rough time with cough and antibiotics but definitely on the mend now. Due for a pre portacath bloodtest tomorrow, weekend in Bournemouth and then fitting on Monday.
It sounds good- I’m in West London so probably less of a trek for me. Glad to hear you are on the mend and great news about your Port fitting (I know its taken a while!)
hello everyone, also havent been on the post for a while and like keyfeatures am also struggling a little bit today. had 2nd fec yesterday so maybe its just coming down from it, it had to be postponed because my levels didnt come up and then there was staff sickness so postponed, yesterday i was happy to get it done and relieved. now i’ve got that lost feeling again, so am up earlier than normal and will get out the house to do some shopping, better than sitting around.
love to all
anne
just READ your post, inshock, i will still be around, into feb/mar cos i am every 3 weeks, and then 3/5 weeks of radiotherapy. and am now realising most of us dont go through this like clockwork. delays and blood results etc, good luck xx
Hi amd66 - sorry to hear you are struggling at the moment. After a tough couple of days I started to feel very sorry for myself. Now I’ve bounced back. It is so lovely to be able to enjoy the day again and just goes to show how the body recovers. It felt like a long, long road ahead midweek but now seems much less arduous again.
Hugs to everyone having a difficult day. Be kind to yourselves, this too shall pass.
Nicola x
I know we aren’t all at the same point in our treatment but I wonder if the 3rd cycle might be tougher. I was sick all last night which came as a bit of a shock as I’d not even felt nauseus on the previous 2 cycles. Anyway feeling ok(ish) today-hope everyone else is hanging on in there x
hi sukiem. ot seems from others that as we get into 3/4 we get more se, hope yours goes off soon, and thanks keyfeatures, its just nice that we are all feeling the same from one day to another, big hugs to you all, especially those who are also feeling a bit crappy. glad to have done a bit of shopping but starting to yawn now so sleepytime xxx
Thanks amd-and well done for getting out and doing your shopping and have a nice zzz. My intention is to not leave the house until next week now! x
Just checking in to keep the September thread going. Despite the rather impressive portacath bruise, I’m having a good week so far. Cough and thrush etc etc have cleared up, energy levels returning to normal. Hubby and inlaws (who are still staying wiht us) all have ‘flu’ but fingers crossed I’ve either avoided it or possibly started it with my cough a while back.
Hi everyone - our thread has gone a bit quiet so thought we needed a bump. Keyfeatures hope your portacath will improve things for you and keeping fingers crossed you dont succumb to the flu thats around you. Chemo 4 is just around the corner so we are getting there and for me it has gone really quick so far, just hope it carries on and I can get this done and dusted by the new year.
Keep well everyone and keep posting so we don’t lose the thread
Lol
My OH had flu (or at least a cough with fever and chills) and then my inlaws who are staying with it got it. We called an ambulance last night because my father -in-law took a funny turn in the night and I was woken by the sounds of my mother-in-law screaming. THe way she was we thought he had had a heart attack but now think it was all a bit of a panic attack combined with feelng unwell - they are in a foreign country and don’t speak any English. Have to say the emergency services were absolutely fantastic but it must have been an odd sight me letting them in with my bald head and bruised arm, then having to communicate via various stages of translation.
We only live in a one bed flat so how I’ve avoided catching the bug so far I don’t know. Maybe because I was on antibiotics / steroids / granocyte injections?