Strange day ahead

Oh Maz, those are two very big things for one day. 

I hope your Oncologist is well prepared and has a manageable plan that will keep you as well as possible for as long as possible.

The funeral will be tough, but I hope you can find some comfort in being there. I find funerals more of an ordeal since my terminal diagnosis, but they are an important part of the grieving process.

I'll be thinking about you especially today, sending you the very best of luck and love. You will find the strength and courage to get through this, as you've done before, but it's so hard. xx

Hi maz I’m sorry I was late to reply. I hope your appointment was ok and you have a good plan now in place, it always helps I think.

but I hope you were able to say goodbye to your friend beforehand, it sounds like you were a great help to her and your love gave you comfort at such a tough time. As Tina says funerals are hard with our diagnosis, but I hope you were able to say goodbye and felt you di her proud.

thinking of you tonight after such a hard day xxx

Thanks Tinalay 

The funeral was very small but at least those closest gave her a send off which she would have wanted. 

My appointment has left me and my husband in a daze and I will have to try and find out what exactly  he was saying in the 5 minute appointment that was 2 hours late.  it was not what we had expected at all. 

I am feeling very let down and angry at present firstly as what I was told about continuing with my treatment that I was assured was working was a lie. Before the bombshell was dropped that they would be stopping my meds, as he cannot make a good case to keep them, I had agreed to radio therapy which I am unsure now what if any use it will be. My husband and I just know what he was saying did not sound good. I need some straight answers to some difficult questions. 

Oh no Maz59! I'm so, so sorry.

So not only did your Consultant drop a bombshell, he did it in an unsympathetic manner and left you without any trust, full of uncertainty and facing the unknown. Doesn't get much worse than that, I'm ****ing furious on your behalf.

What now? I would want another appointment asap with a Macmillan nurse in attendance to get some answers.

You and your husband can't be left in such turmoil, it's unthinkable. 

As Daloni would say, breathe in, breathe out, repeat. I hope you'll be given a way forward with a more positive prognosis. Thinking of you and sending a massive hug xx

Hi

What an extraordinarily difficult day. How are you after a night’s sleep? 

It sounds as though you do need some clarity after that meeting with your oncologist. Do you have a clinical nurse specialist you can call? 

Radiotherapy can be very useful in shrinking tumours to minimise the impact they have on your quality of life. At least that’s my understanding of it but perhaps you could check that out on the ask an expert part of the site. Do you know where that is? 

Sorry. I seem to have asked a lot of questions. Don’t feel obliged to answer them. 

Love and hugs and good vibes coming your way

xxx

thanks for the replies folk

Unfortunately I got very little sleep and I an quite emotional today as the reality of what we think was said sinks in. 

I just can not see how things went from a very optimistic scenario to complete crap and it all seems to boil down to some kind of power play between 2 people. 

Those who have followed discussions may remember the carry on I had re the Masectomy in the first place with the surgeon not wanting to do it and refusing twice and the Oncologist wanting it done and finally the MDT directing it was to be done 16 months later. Two days before the Op there was a heated exchange as the oncologist only want the Masectomy done and no nodes as I already had extensive spread, on that day too I was assured I would return to the drug Ribociclib after the Op as this was still working and in fact shrinking mets especially in the Liver. On the day however the surgeon made a remark about the oncologists seeming to think he could "cherry pick". After the op I was very poorly as unfortunately I had been given 2 drugs I should not have been given (apparently they have looked into this the Anesthetist is to be  informed he should not have done this as it was documented and no one had explored any other drugs that could/should have been used). It was not until yesterday however I discovered the repercussions of the surgeons actions in taking away the nodes. I am now much more at risk to Lymphodema and Radio Therapy could actually make this worse. apparently the side effects will be much greater than last time also. But the icing on the cake is that the Oncologist is now unable to get permission to continue with the Ribociclib as the second breast cancer was well advanced in the nodes. Something which was to be expected as I had waited 16 months for surgery to be agreed, it would have been odd if not. I asked about other drugs and there is nothing I have not already tried he could try one of them again but last time it affected my heart. trials are out as my body reactions are not normal so i would skew results. 

In the cold hours of this morning I was awake trying to work this out, I have agreed to Radio therapy but it will be very painful, I will probably get Lymphodema and there is nothing to follow. My Livers and Bone Mets are likely to grow again together with the new lung Mets The only pain killer I can tolerate is paracetomol unless i am willing to be totally unresponsive. 

What have I done or more What have they done to me. I was happily going along feeling really well and the rug has well and truly been pulled from beneath me. 

I have asked to see the Oncologist again to check this is right and i want to know is this the end of the treatment road and what good would radio therapy do as i want quality i am also going to push for them to try to find an alternative pain killer in case it is needed. 

The MacMillian Nurse has advised I ask why the Nodes were taken as it is not usually in cases like mine and that has then jeopardised my treatment. 

I feel i have lost trust in the NHS. I know Cancer medication is expensive but I have had very little medication mainly due to being taken off it after days then waiting months till my bloods recover then one comes along that helps and i only need a third dose. Then they remove a breast, telling me it will help them better treat the newer cancer, and i end up with the option of painful treatment that probably wont do anything and the meds that were helping being stopped i think its called Sod's Law.  I am not even sure who to be annoyed with other than myself before i agreed to the op i specifically asked would i still keep the Ribociclib treatment and was told yes I this together with the fear of the cancer fungating swayed me to say yes with hindsight it was a mistake. The surgeon has probably got his prediction right as he said i would not last 3 months after an op. The oncologist knows he could keep me going longer but will not now get the funding i need him to give me things straight now before i go down the RT route. 

Sorry to bore people but i have cried through writing this, if nothing else it gets it off my chest and it highlights trying to get as much info as possible before you agree to things and i could and probably should have requested a different surgeon once i knew there was such a bit difference of opinions between the oncologist and the surgeon. It may or may not make a difference overall but I do feel my life expectancy has just been radically reduced. 

thanks for being there 

Maz, I am so extremely sorry and mad! at your experience.  What the hell.  I don't feel that you should in any way be asking yourself why didn't I.....?   Hindsight is 20/20 vision, and from what I've read you asked all the right questions.   I think it is a normal expectation that we would believe that professionals are working on our behalf for our good.   I am stinking mad for you, and I don't know you.  Just that I hear where you were and where you are now, having done all that you could, you relied on professionals who have let you down.  As you work through this may you have kindness and comfort and enough energy to shout loudly at someone.

Much love.

Robyn 

Maz

I wish I could help. Is it possible to seek another opinion? Can your Macmillan nurse help you further? This is so unfair

Xx

I have heard back from the secretary today that I can go back next Thursday to see the oncologist. He is apparently chasing the histology results as after 5 weeks they are still not back. I am not sure if this will make a difference.

I want the truth and I would like him to put it in writing as I am sick of them saying things like perhaps you misunderstood. When I go I always go with either my husband or my friend and I always check what was said even if it means asking to see them again. 

My friend was so shocked today as she is a trained counsellor and listening is her gift. She even wrote down that he categorically said I would stay on the meds and I was not having nodes removed. 

I spoke to the MacMillan nurse today and she has advised I ask why did the surgeon remove the nodes as it is unusual when the disease is already widespread especially when he was asked not to. 

I was ready to give up this morning but now l know I have to fight on. 

Thanks for your reply 

Thanks Robyn I felt like I was going mad and being used in some cruel game. 

I am going to see the oncologist again and want some answers. I know from past experience he can be very evasive. 

I am also going to try and find out why I went in for one thing and it was decided to do more. I accept there might have been a good reason but it would have been good to have had an explanation and been told about the complications it caused. 

If I don't feel comfortable going ahead with the RT I am going to request a second opinion. 

This illness is bad enough without having all this.