‘Starman’: today’s post on chemonights.blogspot.co.uk/
We went to the David Bowie exhibition!! It was AMAZING!!
Lolly-daft idea but would sunglasses help? Maybe take the glare from the screen. Keep thinking of Gran Canaria in October when all this will be behind you.
Shellebelle-Rotten that you can’t get the chemo with taxanes. Did I really say that? Good luck on Monday. That’ll be one more under your belt.
Mandy P-Just wait till the last of the side effects wear off. You will feel GREAT!!!
Cybele-Loved the Bowie clip. (Went to see him years ago up here).
I particularly enjoyed the audience dancing in the clip. What was going on with the out of time bouncing?!!!
Hi Ladies,
New pain killers so good I can type a bit. Probably all be nonsense.
Maire, Border Collies and Mandy - well done on finishing chemo. Mandy - good luck with rads.
Shellebelle, Lisalou and Lolly - hope the sfx are improving. Shellebelle - sounds like you are having a rough time - hope the new regime is better.
QD - sorrry to hear about your mum - how is she now?
Maire and Cybele - Yay to holiday plans. As for whether to delay rads or not - definitly delay for a holiday. A few weeks will make no difference to your treatment, but a holiday will make a big difference in terms of your mental health.
As for me, the palliative care consultant put me on pain killers that actually kill pain. It’s amazing. I think he is the first person who believed how much pain I was in. He even gave me extra stuff to take, just in case. I havn’t needed it. I am floating about on the ceiling and can’t always remember my own name, but it is fab that I am not crying with pain and not experiencing paraniod ideas about everyone being out to get me. My chemo is officially stopped. So, I have finished all my treatment. Not sure what that means yet, but it does mean I can plan a holiday. Yay. Thank you to all of you who supported me and worried about me and encouraged me. Best not keep on typing as, just cos it doesn’t hurt, doesn’t mean I should do it…
xxxx
Cressida - Yay to the painkillers. At last someone has done something to help you. Don’t know whether to congratulate you on finishing treatment or not bearing in mind your chemo was stopped mid treatment. Having said that you need some time to recover.
Went to rads planning on Wednesday. Have been reading everyone’s individual experiences regarding cubicles or lack of said cubicles, robes etc. Was relieved to find lovely cubicle with seat and mirror (bit like M&S) and a very fetching little tunic, colour of one’s choice, with velcro fastenings down front and on shoulders. Given a little pair of slippers to wear each time I go and a bag to put my clothes in. The tattoos were painless and they were a very pleasant team soi no complaints. Rads start 3rd April. Eleven days out of final chemo which wasn’t as bad as the previous two. Can’t wait to get past week 3 and see if I start to feel more normal.
Well done to all those who are planning holidays - nice to get away from all this awful weather. The winter has been so long.
Shellebelle - you are having a rotten time at the moment. Chemos bad enough just getting through it without two failed attempts. Hope it goes better next time.
Cressida-You’re getting you mojo back (punches air).
Border Collies- My radiotherapy has almost finished and I am absolutely fine. I’m fair skinned (once a freckley ginger) and my skin is barely red.
Had 4th Herceptin yesterday. Absolutely no noticeable side effects (well maybe a slighlty more runny nose but it is bloody freezing out there). In fact heart scan showed a 3% improvement over pre chemo result.
Yay. Feel even better today. Drugs are good. Going out to do something outside. Not sure what, don’t really care what.
Well the bloody snow is here again , it seems never ending this winter doesn’t it , it will be another snow walk this afternoon with my little boy , I went for complementary therapy on thurs so had a very lovely massage , I just can’t seem to be able to relax no matter how much I concentrate on my breathing stupid thoughts pop in my very busy head , very annoying , I had my bloods done while I was there which was fine as I mentioned I’ve been getting short of breath , so I’m on yet more antibiotics as a precaution just in case something lurking , I’ll be so glad not to have to take so many tablets , and I think I’ll have to wean myself off co codamol as I seem to be on them all the time for various aches and pains , can’t wait for summer when all this is over and do you think we will get kicked off this site when we all done or will we all be able to pop in from time to time to keep in touch x
cybelle , really glad the drugs are working and you enjoyed Bowie , sound amazing , your plans of delaying rads seem a good idea and your pics of your old home look like a dream , it will do you the world of good x
marie, glad everything going well and your coming to an end of your rads x
lolly, so sorry you feeling dizzy all time , must be horrible , my eyes get abit blurred which I’m putting down to chemo, well I put everything down to chemo! Hope it wears off soon , have you spoke to the oncologist about it x
shellebelle, I can’t think of anything worse than going for chemo twice and not having it , no wonder your feeling drained and fragile , I think we all would , lets hope you get back on track on mon, thinking of you x
mandy, yeah!!! On your final chemo and normality round the corner for you x
cressida, thank god someone finally took notice of you and you got some pain meds that work x
bordercollies, glad your rads planning went ok, I can’t wait to get to that stage, what’s the tattoo thing? X
Lisalouw the tattooing is nothing to worry about. They put a small permanent black dot, in my case, in between the breasts and one each side of the breasts. This apparently helps them to zap you in exactly the same place each time. Some people on here said that the tattooing was painful and I had visions of being approached with a large tattooist’s needle and a black dot between my breasts replicating a large blackhead! In truth, in my case, is wasn’t really a tattoo at all. They merely put some permanant ink on my skin and then said “small scratch coming” and that’s exactly what it was. No pain and the ink just seeped into the scratch and they wiped off the excess. Actually a blind man would be glad to see them they are so minute.
My eyes have been a problem all through chemo and are still playing me up on 11th day past FECX6. They have been sore and red throughout, easing a bit toward the end of each chemo and I’ve had blurred vision and my vision seems to have altered somewhat. I did speak to my oncologist about this and asked if it were permanant and she was qquite emphatic that it was a side effect and told me definitely not to go rushing off for an expensive eye examination as things would settle down in time. Just hope she’s right.
How far off rads are you?
hi ladies
i hope this post posts if you see what i mean because my last 2 havent!
I am getting horrendous eye problems. I seem to have a memory that someone said they saw “bees” in their eyes - or did i imagine it? well im seeing “bees” in my eyes. horrid!
My mom is healing - but very slowly. I managed to see her just before i was nuked on wednesady. She is going to be moved to an oap rehab place soon At nearly 95 she will be the oldest woman the hos have ever sent!
Love to all. Cant write to much cos feel awful.
QD
Border collies , I had visions of a burly tattooed man with a needle also ha ha , the eye thing sounds awful and do hope it all settles down after chemo out of your system , I’ve got another 2 sessions to go , 5th hopefully due this thurs , 2 too many at the moment it’s dragging xxx
My eyesight has def. deteriorated. Just hoping it improve,s though having avoided glasses for 49 years I suppose there’s an inevitability about it. Sigh.
Lisalouw - My perspective definitely changed once I had FECx5. Side effects apart from mouth and eyes were almost non-existant and I felt a sense of freedom looming. The light at the end of the tunnel was now beaming brightly and FECx6 came around surprising quickly. When I left the clinic after the final FEC I felt as if I just been released from some sort of prison. A good feeling - hope the time goes quickly for you too.
I’ve got really behind in responding to people and kind of lost track, so if I haven’t replied to something, please forgive me…
Re eyes, mine have been going very blurry the lasrt couple of days, which is slightly freaking me out, but from reading everyone else’s comments I gather this is not unusual, so that’s reassuring.
Congrats to those who’ve already finished - Maire ,you seem t o be romping home, it’s so cheering t oread about , and Border Collies, the whole being let out of prison thing - that’s what I keep thinking. SO CLOSE NOW!
Cress, so good you are back and no longer in so much pain xx
BIG HUGS to those who are still majorly suffering , or keep having chemo postponed- it’s strange, isn’t it, how having your chemo delayed becomes your worst nightmare?
I am now almost completely spherical because thesteroids are making me eat so much, but theside effects were so much easier this time, it is worth it. Once i’m off the steroids and back in the swimming pool it will go…
Am finding fatigue much worse this cycle.Since Friday I’ve been so tired, so weak, finding it really hard to do anything. But It’s day 10 now, so should start picking up soon.
I just can’t wait for FEC6 now - roll on a week on Thursday…
Off to the sun hopefully tomorrow. Leaving cancer behind for a week! Will still have the portacath in place to spoil all my summer tops and swimming costume. The delayed radiation treatment starts day after I get back and I guess I will finally have to open the Tamoxifen.
Radiation, herceptin 7 and tamoxifen!! All on my first day back.
Its a joy.
mz6507 have a truly excellent time, and forget all about what’s waiting for you when you get back xxx
Am increasingly thinking that a holiday in the sunshine is the thing we all most need right now - getting physically away will help us to get mentallyaway, out of the cancer prison.
I have so f=much felt as if i=I have been in prison for the last 6 months…
Morning Ladies,
It seems a bit quiet on here - are you all lurking like me? Pop in and say hello.
Still away with the fairies on the pills. I have never slept so well in my life. I just go to bed and go to sleep. I only wake up when I need to wee. If I get some Tenna lady thingys I could just sleep all day. When I see the palliative care doc he might want to wean me off - that might be the first time I cry all week.
Arm movement continues to improve. I can raise my arm to shoulder level. Having the amusing sfx of violent twitching, so I am a bit tourettes. I already had the swearing bit.
I see many of you are struggling - it’s really hard as you get close to the end but still have to carry on. The last 2 seem to take forever and seem really unfair. All you can do is keep plodding on. And plan a holiday. Squeeze it in before rads, or before surgery, or before whatever the next horrible thing they have planned for you is. Don’t have to go abroad. Don’t have to face the travel insurance problem. Treat yourself to a nice hotel, even for a couple of days. Stuff the expense. What are you saving it for? Just get away from it and pretend you are normal. It is essential for your mental health. Do as Cress says. You know I am right.
Now I am going back to surfing the posh hotels in Jersey. Can’t book till last minute when I know treatment plans. but I can plan, oh yes I can plan.
Keep on keeping on, xxx
Hi Folks-Only 2 more rads to go. Skin barely pink.
Only irritating chemo side effect is going from being freezing in bed at night to being clammy. Very annoying. God knows what will happen when I take Tamoxifen.
Mz-You’re well on your way with the herceptin. I’ve only had 4. No side effects so far. How are you managing with it? Enjoy your holiday. Looks like we’ll both be cracking open the Tamoxifen when we get back!
Cybele-Am enjoying your blog at the moment. So many similarities to my own journey- though thankfully I didn’t have such an awful reaction to anaesthetic (Splitting headache was bad enough).
Cressida-You are sounding chirpier by the day. Really hope they come up with a decent treatment plan and that they take much better care of you next time round.
Well ladies, I have successfully been poisoned with Epirubicin and Cyclophosphamide (neither of which I am allergic to…hurrah - can’t believe I’m cheering that fact!) and so I am now on cycle 5 out of 6, discounting of course the two failed taxane attempts. I am just hoping that 5 x EC’s and the 1 x Docetaxel that I did manage to get into my body before it realised what kind of nasty crap it was and refused any more, will be enough to do an effective job, especially having had a brief ceasefire in treatment when things went t*ts up (or just the one t*t in my case).
Love & hugs to all xx
Michelle