A PLAN at last ! (excuse short post, got injury to left hand, so one handed typing)
I don't know those meds at all, but there are certainly threads here dedicated to them Cazzy, where I'm sure you will get lots of advice and support.
Are you able to relax for a few days now, take it easy ?
Saw Oncologist, chemo can go ahead and begin without ECG , they will add the two stronger drugs later. The chemo is TCH with Perjeta and herceptin. then op then rads. Herceptin for a year then zolendronic acid for 3 years. No actual start date yet, but there is a plan. XXX
Sometimes just want to give up. ECG booked for 11.6.18, earliest appointment, 5 days for results. Seeing oncologist this afternoon will start to make loud noises see if the hospital can give me ECG. Deep breath carry on. x
Yes, you are really going to need to take time later on to process all of this, as your grieving for your Mum is rolling into your own health worries. I can scarcely believe that the very next day after the funeral you have your own oncology meeting - you must be simply exhausted! Hope tomorrow answers all your questions and you have a nice firm treatment plan in place. x
Managed the funeral OK, my brothers held my hands and we all got through it. Such a shock for everyone, no time to adjust before I start on the next stage of my journey. Tomorrow meeting the Oncologist, my sister in law is coming with me, to make sure we are clear on what is going to happen next. X
Awww Cazzy, good stuff.....what a relief for you! Its odd saying that when you still have so much to face and so much stress in your life right now, but you know what I mean - things are much better than they could have been. You must be one helluva strong one lady, with so much to drain you right now and still you are hanging on in there with courage.
Great news Cazzy.
Xhugx for Monday.
Cazzy I'm so pleased for you. I know very often I feel as if my late Mum and Dad are there looking over me.
Will be thinking of you Monday and sending you hugs.
OMG that is fabulous news, I am so very pleased and relieved for you my dear.
Your mum and dad were looking over you xxx
I am sure PALS will be very pleased to get a thank you letter from you.
Onwards and upwards now
Will be thinking about you on Monday
Ok Well here we go. I came out of the meeting with the surgeon with the biggest smile on my face. IT HAS NOT SPREAD to my Liver, yay. Also the tumour is 4cm not 6cm as stated in the letter to me, AND I will be having a lumpectomy, not a mascectomy, though I will be losing my nipple, and I can come home the same day. Obviously very very happy, relieved, and a weight lifted from my shoulders. I have already had a Clip put in my right breast to mark the tumour, seeing oncologist next Tues, and ECG next week. I will start with Chemo begining with Herceptin then going onto another mix. Then op then rads and poss tabs. Feel ready to start a race. Looking forward to next week except for the Monday as that is Mums funeral. Oddly when I went up to hers and dads picture this morning I said quite strongly 'don't worry I will be OK'. Going to write a heartfelt thank you letter to PALS, it was good to have them on my side. Hugs to all Cazzy
Evening, Looking forward to the appointment tomorrow, a little anxious too. Feel a lot more positive today as I was able to access a pennybrohn course for living with cancer. Two day course yesterday and next wednesday. Because I went there and took part in the course I felt that I was more in control. At least I can be proactive in my care. I was worried as to how I would cope but my sister in law came as my supporter and she was able to eplain about my Mum. Fingers crossed for tomorrow will let you know.X
So glad that they have finally sorted out an appointment for you tomorrow.
Sending you and your family hugs for Monday
I've just caught up on this thread, so sorry to hear about your mum. That is so hard to deal with when you have so many other things to worry about, you must still be in shock.
I hope your meeting tomorrow does go ahead so you can start to make some progress on that front.
Sending you a hug
I had a phone call from the breast cancer nurse yesterday saying I have an appointment on Friday at noon. Not sure who with, but one of the surgeons I think. As they do not have their MDT meeting until today I am not counting on it happening. But going to PALS certainly has helped, I will have to continue shouting until I get the treatment sorted.
Mums funeral is on Monday, family and friends are very supportive,one of my brothers has taken on most of the details as we felt I needed to concentrate on me. Cazzy
sendng love and hugs 🤗
Condolences Cazzy xhugx
Oh my darling there are no words that will make your loss easier, but we are all here for you and will support you in whatever way we can.
I am sending you loving hugs
Oh Cazzy, I have no words for you right now, that will make any difference to your loss and the pain you are feeling in so many ways. Huge condolences on the shocking and tragic loss of your Mum, at a time that is so challenging for you already. Are there supportive people around you ? This too will pass, and at some point in the not so distant future all of this nightmare will be the past.
Mum died tonight, very peaeful. Night all x
Oh my dear what a dreadful time you are having and you do not need to have this on top of everything.
I totally agree, speak with the PALS team again tomorrow and get them to contact the breast clinic, as they should take this up with them in order to prevent a formal complaint being made, to get this resolved so that you have an appointment.
Sending you hugs
Mum rallying, but in HDU isolation ward. Cazzy X
Hi, Went to PALS, as I was in hospital with Mum. They suggested that I go in person to the breast clinic and insist that I'm given an appointment for Fri 11th, if not able to go back to them. Went saw the receptionist who said already fully booked cannot get on the Comp, but that I was on the pending list for a cancelled appointment next Fri, but still would not know until Weds/Thurs. Far too tired and upset to be coherent so will get back to PALS. Cazzy
Cazzy take someone with you who can help advocate (if you lose this plot, as I'm sure I would!) . They seem to have NO IDEA sometimes these medics of what this does to a person knowing they have cancer that needs treating. Its outrageous that this is still going on - how would they feel ???
Sorry to hear about your Mum too, what a truly hideous day. 😞
The bleeped words began with an S and ended with a T. S--T
**bleep**ty **bleep**ty **bleep** **bleep** Day. Started well went to work . recieved phone call from sister in law saying Your Mums OK but. It turns out that Mum had a fire in her kitchen. When we got there Mum very breathless, Fire smoke only, and very scarily confused. So we took her to the local hospital at 10.30. Several hours later and many tests later she was admitted on to an emergency ward. Suffering from a severe infection and dehydration. So far so good Mum in safe hands, 6.30 whilst still in hospital and overlooking the BCcentre I recieved a phone call from my BCN. Wait for it........they have cancelled my appointment on Fri.AAAARRRRGGGGHHHH, because the MRI report had not been written. So though the Dr who requested it and can interpret it was at the MDTM as it was not written it would not be discussed. AAAAARRRRGGGGHHHH. They will discuss it next Weds however they are fully booked on the Fri AAAAARRRRGGGGHHH so could not offer me an appointment . I did get upset and angry, thoiugh talking as quiet as possible in the loo of my Mums hospital room. So yes they will see me on Fri but cannot give me a time AAAARRRRGGGGHHHH. So now once again in Limbo feeling pretty **bleep** stressed unhappy crying and going to eat a large bar of chocolate. A little note, the Fri meeting is to let me know what is going to happen, not when it is going to happen. An operation I will be added to a list, Chemo another appoint with an oncologist who will then sort out the mix and then I will start treatment . So no nearer than I was on the 29.3.18when I got the results of the Biopsy . Screaming very loudly Cazzy
Oh flip - phew - I think you might have gone ballistic on the phone to them if delayed days further. Glad you've managed to get out there and find the support group, they can be so helpful in those early days. x
Had a phone call yesterday 4pm ish, saying that my plan appointment, arranged 3 weeks ago, had to be cancelled. as there was a student training day. Another aaaarrrggghh,. However not too bad as the appointment was moved to 1.50, so later the same day. On a more positive note I went to a local breast cancer support group. Lovely ladies. Looking forward to Fri to finally, hopefully, getting a game plan. Hugs Cazzy X
Had the MRI Yay. Asked the nurse how soon the results will be ready ? she quite happily said 2-3 weeks. AAAAAHHHHHH. I said that the MDT meeting was on weds and my appointment to hear the plan on Fri. She said not to worry the Dr who requested the MRI would be able to see it on her computor on the weds, so hopefully a plan will be agreed on. Lovely day today. hugs cazzy
Best of luck, Cazzy. You've had such a horribly long wait and have been so patient. (Yes, I realise we all have to be as we have no option.)
I'm due to see the surgeon on Wednes pm for the lab results of the tumour and lymph nodes removed on 24 April, and am supposedly being given a treatment plan which will have been discussed by the MDT. I'm not looking forward to it, but wish to get it over with. For a great many reasons, I don't think I could cope with chemo on top of radiotherapy and endocrine therapy (apparently certs), so this is going to be difficult. The GP thinks they'll fling everything at me. Although the surgeon (a consultant) is, I believe, a very competent surgeon, she is perhaps not the most empathetic clinician where the patient as an individual is concerned.
Very best wishes to you and everyone else on this extremely difficult journey.
MRI this afternoon, this has taken an age to come around. Fingers crossed they can keep on top of it and discuss on Weds and finally on Fri give me a game plan. Waiting 7 weeks for action. Hugs all, enjoy the bank holiday. X
That is tough Cazzy, 7 weeks is a long time to try and deal with the waiting for a treatment plan and things to start moving forwards. I will say though, that you aren't alone in having this delay - I've seen and heard of this before particularly when things become more complex with the introduction of MRIs and things. I do hope that you also stated to your BCN about 'its becoming hard to remain positive'. I know that she said she would be proactive and I guess at least they are recognising that this is a psychologically difficult place for you at the moment, but I do hope they realise HOW hard it is ?
Hi, Just had a phone call from my BCN who thanked me for letting them know the time and date of my MRI as they can chase up the written report from the Liver specialist. Because as that Mon is a bank holiday the specialist will not see the MRI until the Tues, at the earliest, then the report has to be typed up and sent.to the multi disciplinary team, who meet on Weds . My appointment is 9.20 on the Fri. The nurse was kinda warning me that they will try their best and be proactive they may have to delay my appointment. So that makes it 7 weeks so far and still waiting for a plan. I can feel my head going down, it is getting more and more difficult to be positive. Upset, Cazzy
I'm glad someone is going with you to the MRI anyway...even if the appointment to discuss is a few days later. Life, and its challenges always feel so much better when you have a loving companion X
To be clear the MRI is on Mon 7.5.18 my meeting with the surgeon or Onc on th eFri 11.5.18
I believe, I have the MRI on the Mon, the team then have their chat on Weds, then I go , finally, after 7 weeks, on the Fri to hear the game plan, fingers crossed. My son has surprised me by insisiting that he comes with to the MRI, this is because he has the week off. This is good as he can drive me there. Cazzy
I think it depends Cazzy, on if they are reading and discussing the MRI immediately with you or not. Are you able to find out that information? The likelihood is that the surgeon/onc will look at it later and call you back for another appointment, where you can take somebody, but you never know....
Got over my little hiccup this morning. Rang the hospital MRI dept and they say my letter is in the post and is for Mon 7th at 4.10pm, yay. So ladies do I need to take anyone with me or is it a staight forward scan? Any info appreciated. Hugs
Saw the surgeon last fri he said i needed an MRI, By Tues not heard anything and my sister in law, bless her rang the hospital only to find that I had not been referred yet. I left a message for my BCN to call me back explaining why. In the afternoon she called back to apologise as the referral had been left on a desk and not been sent. She said she had walked it round herself. But the whole thing does not fill me with confidence.. I also found out that because it is for my Liver I will go into the general pot. If it was for the breast that have a specific day,Mon, to be scanned. So not heard anything possible anothers weeks delay before game plan. I am finding all of this wearing now. Cazzy X
Cazzy, I am so extremely sorry to hear this. The waiting is so nerve-racking, quite apart from the treatments themselves. Glad you have a really helpful and supportive sister-in-law.
From reading quite a few threads on this site, it is very clear breast cancer isn't the 'simple illness from which you recover quickly' that some people (who haven't had it) appear to believe. I'm beginning to realise how poorly many people understand it. Perhaps it's because they don't want to.
Fingers crossed for you.
I'm trying hard not to think too hard about next Tuesday. One of the worst things is knowing that, physically, I feel all right at the moment, apart from arthritic joint pain. It's the state I'll be in next Wednesday and thereafter that's concerning me.
x and hugs to you