The haematologist was also not happy as he says the oncologist should talk to the pharmacist but he has done that but not yet got a responce. I just feel upset and let down today and the more research i do the more scared i get. Both Xoladex and Letrozole afects the heart in the same way my leakeamia medication does so i would be surprised if three drugs putting stress on my heart is a good idea on top of surgery. I will ask more tomorrow and may suggest that we wait for the Zoladex until after surgery when the position has been discussed by every one.
In a very emotional place today for some reason which i guess is partly hormonal due to chemo shutting everything down but everything is getting too much of a worry.
I’m not surprised Christine, you have a lot to contend with and the system isn’t helping you. Perhaps take a break from the research for now. I hope your team start working as a team and come through for you. I wish I could be more help, but thinking of you and sending big hug xx
Thinking of you, Christine, at this very difficult time. A second oncologist’s opinion would seem to be needed. You should not be facing problems like this. I hope that when memories of the rain & discomfort recede, you will have good memories of the concerts.
Chemo is an absolute brute. Had my last but one today. Was I happy? As grumpy as I’ve ever been. Hospital sucks my brains out as I walk through the door. I know what’s coming. Thanks for your good luck wishes, Michelle. I do hope it’s all going ok for you. Had a conversation today with another patient & we agreed that one day people would marvel that, back in the bad old days, they poisoned cancer patients as an accepted treatment, like lobotomies used to be.
Thanks Gygi. Tired & nauseous is so hard to bear. I’m trying to go for the salads but, like you, I prefer ice cream.
The moment my OH went out today, I cleaned the kitchen & then went for a walk. It worked off some of the grumpiness. I must be horrible to live with.
Hi guys sorry for your woes and tribulations today & I have some to add to the mix. 8 hours at the cancer clinic:waited 1 & a half hours for blood test as people who book it don’t know the nurses won’t do it as they are training!!! I checked 3 times they wanted me in at 8.30 & they kept saying yes. Good to go then allergic reaction number 1 Nowhere near as bad as last week I could see it coming. We went for it again and had another reaction. Seems that the end of Paclitaxel no idea what’s next. They wanted me to wait till Wed week and I said no! I need to know now. Will be waiting for their call tomorrow and will ring if not. That’s the thing Christine. It’s totally awful that we have to be on the buzzer with our treatment but I think we need to. However if I’m feeling rough it will have to wait. I ring Macmillan for expert advice, then Breast cancer care & then my breast cancer nurse so I can ask the right questions. You seem really on the ball but it is so hard as they are the experts but they do need a kick up the bum sometimes. A doctor said to me don’t do anything unless you are happy with it, seek advice & tell them it’s not clear. When I was in hospital last week I said I was concerned about stopping the blood thinning injections. Even though I didn’t want to do them& I had pushed to stop them. Turns out pharmacist got wrong advice from junior doc who was not aware I was on chemo…and I met the pharmacist at an oncology meeting duh! (She was lovely and she did call me back 2 times to tell me I could stop which I can’t lol) So still injecting ha8ve had to set up a reminder system to remember. Anyhoo in a weird place after all those steroids I had today to counteract the allergic reaction. Want to get you all a hug and will speak more tomorrow. Xxx
It’s good to rant Dorabel! I so hate it when they sat to go one place and then another. Takes me so long to walk there. I look so fatigued they go and get it for me now! And the same with me my bc nurse was there are the start but then has disappeared. Not seen her or spoke to her since I started chemo. But they are all lovely just hard to get hold of. I really phone Macmillan for questions now. I’ll be ringing them tomorrow. And I told the team today it’s hard to get hold of bc nurses and they told me to ring from the oncology emergency card and I will tomorrow. I guess it’s funding and so many of us with issues. Not enough staff. I am generally a patient patient but with umff. Big hug Dora bel. Let’s talk tomorrow going to “try” to sleep now xxx
Morning all, just to say I’m proud of myself. Went for a walk with #lovely husky round the park at 6am. It was gorgeous. Home now for a cup of tea and a tidy up. Then will rest up. Hope you all get by and have a good day Gigix
Glad we all have somewhere to rant and moan where we all completely understand where it is coming from. My bc nurse is lovely but seems to be associted with the breast surgeon and not the chemo but when i was in a real mess i emailed her and she got things sorted. I haven’t actually seen her much and i don’t have a phone number but emails seem to be dealt with within 24 hours usually.
I have had so many times i have been chasing around hospitals for medication on the leaukemae side of things for years. It is an expensive specialist drug they have to order and i get three months at a time. Each time i am chasing if it has been ordered, received and where is it. On some ocassions they don’t know and it has dispensed to a ward or i get a phone call from a ward saying we have this and don’t know why. Seems a total chaotic system.
I did get answeres to my questions yesterday evening and yes i agree Michelle i need to stop the research as it just makes me more worried. I will go to the oncologist informed and take it from there.
Gigi i have been advised that there are interactions between morphine and my othere medication so it is best to stop the leukemia medication before the DIEP until afeter i am off the strong painkillers. How long did you need to take the stronger prescribed painkillers? I hope you get the chemo answers quickly as it must be a worry. I am sure there are other drugs they can try.
Well done for getting out Gygi I hope it has made you feel a bit better. I am so sorry for what you are going through, another reaction is unbelievable and I agree with Christine I hope you get a new alternative soon.
Dorabel I’m glad you have brought up the Breast cancer nurse situation because I thought it was just me. I have met a nurse where I have chemo but only on the first appt, she was brought in when I couldn’t stop crying at everything that was said to me. It was early days and I was a mess. I spoke to her once more but I wouldn’t say she is someone I feel I can contact to answer my questions. There was also a nurse present when I was diagnosed which was at the hospital where I will have surgery and she gave me her number but because I was straight into chemo which is in a different setting I haven’t seen or heard from her since. Hopefully she will be around to help when I go for surgery. Having said all of that I suppose I have been a pretty straight forward case but sometimes I have thought of things I would like to know, I’ve also used Macmillan if I’ve had questions. They have been very helpful. I think it probably is down to funding and they have too many to deal with. My OH told me yesterday that 8 women a day are diagnosed in Wales with BC.
Hi everyone
got great news No more chemo!
Had a call from my bc nurse at 11 to go to Guys for appointment. Needed to get there before 2. My daughter was heading to North London and her friend was driving her and they gave me a lift.
My consultant was lovely told me the options and we decided no more chemo! My bc nurse was there. She was around a lot at the start and for surgery and my first meeting with oncologist before chemo and so it was lovely to see her today when chemo is all done. Really tired but wanted to let you guys know. I’ll write more tomorrow (you know me) take care Gigix
Gygi I’m so pleased for you after all the trauma you have had withbit. Although if I’m honest I am a little jealous as I really can’t wait to have this finished now, but not long for me either. Have a good rest tonight and let us know what the other options were tomorrow xx
This is such good news, Gygi! Sounds like your team is really onto it. Like Michelle, I’m a little jealous that you have finished with chemo but only in the nicest way possible - longing to have finished too.
Thanks for all the input on bc nurses. When I had my rant last night it seemed an important issue. I didn’t sleep well (full of steroids) and kept running over things again and again. This was actually quite helpful, amazingly. It meant that then, after distracting myself with a cup of tea & a crossword, I was able to go back to bed and sleep. What had made a stressful day even more horrible was behind me this morning and not important at all.
The most important thing is how well treatment is working. The rest is details. This forum is brilliant for making me feel better after the hated chemo. It’s great when I see good news on it to celebrate.
That must be a relief Gigi not to have to go through that but a worry about what comes next and how they will treat it. I presume there must be a plan on how to keep you healthy without giving chemo? Wishing you all the best and a less stressful time.
I had my appointment with the oncologist last night and explained my concerns in respect of Zoladex and she has agreed to postpone/cancel the treatment. The Zoladex was supposed to supress the working of the ovaries but as i am 54 and had irregular periods and all the other menapausal symptons i was obvioulsy very close before chemo stopped my periods. She now plans to do a blood test to check if the ovaries have restarted after surgery which may mean no need for Zoladex. There is also the option to remove the ovaries if needed which i think i would opt for rather than risk the heart problems. I think the relief and the cooler weather actualy gave me a better nights sleep for the first time in weeks.
All the best to you all and your help through my melt downs.
Christine glad to hear you are feeling better and your oncologist seems to have come up with a plan.
I had my pre chemo appt on Wednesday. She didn’t have the results for the MRI on my liver which was disappointing however she said she is not worried and the ultrasound consultant said the same, so I will not worry about that.
Everything else seemed good, she had a feel about and said she couldn’t feel any lump in my breast, although when she felt where the lump had been it felt tender to me. That is why I went to the DR in the first place was because it hurt and was painful to lie on. Anyway I have to trust it is going in the right direction and chemo has done its job. Hopefully when they take it out they will say it is DEAD!!
Apparently I should hear from the surgical team
in 3 weeks so things are really moving along now. It does feel like a big relief to be near the end of chemo, I just keep touching wood and keeping my fingers crossed that this one runs smoothly. This time tomorrow I should be back home with hopefully my final course of poison running through my veins.
Hi everyone thank you. Felt very tired Wed and went to work yesterday which was lovely but very tiring so ended up in bed at 6 and slept through. Today my summer holidays start! Will do the herceptin injection so but not seeing oncologist till September. How cool is that!
Michelle hope today goes okay and you don’t feel too bad over the weekend. I’m taking it easy too as did have half chemo Monday so will rest up. Christine and Dorabel hope you have a good weekend too. I feel like I’m not responding to your comments but still so tired so later or tomorrow. Hugs xxx
Take your time Gigi and let your body recover. I am sure in a few days you will better and so glad you don’t need anymore of the chemo. I think your body is telling you it has had enough of it and needs time to recover.
Michelle. hope today goes well and the next week or so as your body deals with your last chemo. The brain will soon be looking to the future as the side effects fade and you feel more normal again. I was always told if the breast hurts it is not usually cancer but something a lot less serious. I went with a painful lump that was a cyst and there was no pain in the area that was cancer. i am sure it is nothing to worry about. Do you know what surgery you are going to have yet? It looks like my DIEP is going to be 14th August but not confirmed yet.
Herceptin injection today which went ok. The main problem i am having is the aches. I may have moaned about that already… Quiet weekend this weekend as last weekend was a bit much. It was lovely and i enjoyed it but the follwoing day or too i was exhausted. It is easy to do too much when I’m feeling good and forget my body is not 100% fit.
Had final chemo today! Yay!!! Hopefully the next 19 days won’t be too harsh on me although I wonder if my luck is running out! I got out of the car when arriving home from the treatment and fell down a drain that we are waiting for the water board to fix! A few cuts and bruises to throw into the mix!
Christine initially I was told I am having a mx and full lymph clearance, I assume this is still the case. Re Recon I would probably want one, but probably not an implant, I don’t know if I can have a recon now as having radiotherapy and the opinion seems to vary. I would probably want a DIEP, assuming that’s what my surgeon recommends xx
Yeah Michelle congratulations hope you haven’t been feeling too rough this weekend. I’m still totally wiped out and nauseous thank goodness I don’t have chemo as planned tomorrow. Hope you all had a nice weekend x
Do hope you are ok, Michelle, after that mishap with the drain. End of chemo has to be good & I’m sending good wishes re. surgery.
Thanks for the kind thoughts, everyone. Chemo last Monday & only today beginning to feel any better. Docetaxel is an evil poison. For two days after the infusion I feel ok & think I’ve got away with it this time. Then on the Thursday I can barely crawl out of bed. That stage lasted longer this time round. Thank goodness it’s only one more to endure.
I sympathise with you over the aches, Christine. “Aches” sounds quite mild but joint pain is anything but. Hope you are managing to sleep despite the pain.
Hope your nausea is under control, Gygi. It’s the most deadly feeling. As you have finished chemo now, I’m hoping you are beginning to leave the horrible side effects behind.
Someone told me today that this time next year, all this (cancer, chemo) would be a distant memory. I’ll believe that when it happens.
Well I’m feeling less drained now! Cuts and bruises healing and coming out of the chemo fog. I just keep thinking that by Monday I should feel pretty ok. I can’t wait, so relieved this stage is almost done. I’m even going to attempt a run or two when I’m over the 14day mark. It might be a bit ambitious but I can’t wait!
I have had an appt through for the surgeon in 2nd. It will be good to know what’s happening and when so I can start to make plans.
How is the nausea Gygi? I hope you have recovered some energy too. That’s it, we have done the chemo rollercoaster, not a ride I would like to repeat!! Are you going to be having rads? Or is it all about recovery for you now?
Christine how are you feeling? It must be good to have the date for your DIEP confirmed, another step forward.
I am pleased you are feeling better Dorabel, now you have a couple of weeks of feeling almost normal and then your last cycle will be here before you know it. Then you too will be all done and can start to get your body back again.
I think we have all been super strong to get through all of this and should give ourselves a great big pat on the back!! Xx
Sorry to read of the previous woes but great news that almost everyone is through chemo or just about to finish . I’m a little jealous as I still have 6 sessions over 6 more weeks to go. The fatigue is really kicking in now and I definitely over did it while we had family here but I know I’ll make it through. My joints are very sore and struggling to find a drug that helps but doesn’t make me feel down. Unfortunately cocodamol is effective but makes me very weepy! Hot baths help but in this weather as quite unappealing.
Also, when I finish chemo on 30 August I’ll have a 3 week break before I start 3 weeks/15sessions of rads on 24 Sept so I’m looking forward to that too and hope to have a little holiday again. Not quite sure where yet, maybe Mallorca but as its been so hot at home I wouldn’t mind going somewhere cooler. We’ll see. Any suggestions most welcome
I’m definitely eating too much ice cream and not enough salads during this heat wave but I figure I’ll work it off when I’m done the chemo and it’ll give me a post chemo focus! That’s what I’m telling myself anyway as I scoff another scoop!
I’m still getting out for walks for a few hours a few times a week but think I’ll need something a bit more to shift it!
A very dear friend just had a baby girl yesterday which was wonderful news and made me very happy as she’s been long awaited. Its nice to see life continuing even tho I feel somewhat stuck in a rut but it made me feel hopeful.
Best wishes to all and hope you aren’t melting too much xx