Upset and exasperated

[27-359]

Hi. I am so upset, that I just have to get it out.

When I spoke to my oncologist eight days ago, he said that he would be reducing my chemo strength as my bloods had been suffering. I arrived in the chemo suite this morning to be told that the pharmacy had still not had the authorisation from the onc, even though they emailed him four times yesterday. They were still unable to contact him today!

Once they received the go ahead, it would take three and a had hours to prepare the infusion. I'm the circumstances I have come home, and hope to get my treatment next week, but since I have already had a week's delay, my anxiety is rising.

And, this afternoon is my brother's funeral, which obviously I am unable to attend. I just want to cry!

Jenny

[Sashay2020]

Oh, Jenny, I am so sorry that you have lost your brother. How difficult for you while you are receiving chemo. I remember being upset when I was scheduled to begin front-line chemo only to learn when I arrived that my doctor had postponed the chemo because she wanted me to have an invasive test which I refused. My chemo started the following week. A couple of weeks later, my chemo was delayed a second time because my doctor would be out of town and she was the only one who could review my labs and order the next chemo. The chemo still proved effective in spite of two delays and I finished it a month ago. So please try not to worry. Again, my condolences on your brother’s passing. 😔Best wishes from Louisiana

Sashay

[Differentforgirls]

My heart goes out to you lovely. Sounds like you’re having a really tough time.

So sad you’re unable to attend your brother’s funeral - I’m sure you’ll find your own way of saying goodbye.

I’m feeling you need to let those emotions out lovely so have a cry if that’s how you feel.

Treat yourself with something too.

Hope your treatment gets sorted soon so you can feel like you’re doing all you can to get rid!

Please take care & be kind to yourself xx

[LittleMissStubborn]

Dear JennySending you a big hug. I am so sorry to hear you have lost your brother and that you can't be there for his funeral.

Dealing with the chemo treatment is difficult enough at the best of times, but things are so much more difficult at the moment. Try not to worry about the postponement of the chemo. It happens sometimes when the blood counts are low and /or when things don't go to plan due to breakdowns in communication. It's very frustrating and worrying, but it's not going to be harmful. I had chemo delayed many times and used to get into a real state about it. Have you ever spoken to anyone at MacMillan as they are very good at talking things through in this kind of situation? I found them very helpful.

Take care of yourself.

Nicola x

[Lyndy]

Hi Jenny I remember the ‘they haven’t made it yet but just sit here and wait’ occasions on chemo. V frustrating and in this climate also putting you at risk. I can put your mind at rest about the delay though... I have had so many delays to treatment, sometimes for a number of weeks but it still worked. Concentrate on being good to yourself and saving your energy for next week xx

[delia2]

I’m so sorry about all these things: the loss of your brother and not being able to attend the funeral and on a different level the unresponsiveness of your oncologist. I can’t understand unless there’s been some kind of accident why he would neglect his responsibility like that. Take care. Xx

[DouglasPouch]

God sounds awful Jenny so many things out of your control. Im not surprised you are angry. If you have the energy I suggest you write via PALS or to the Chemo ward to 'give them feedback' so they know how this has impacted on you and hopefully it will make you feel a bit better too. It is important that they know how these sort of cock ups impact on us so they can hopefully improve. I hope chemo is straightforward next week. Jane x

[Sw21]

I know how you feel about the delay. I had to wait 6 weeks between surgery and chemo because I enrolled in a clinical trial and they had a supply problem with the plastic cassettes to store tissue samples in. They had switched vendors and had not yet done quality control on the new ones. But it’s not just bad luck for us, we feel we are in an urgent situation and losing ground. Compounded with the lose of your brother, and I know I always felt poorly when my counts were low, and covid. Good grief. I hope the encouragement from me and the other wonderful ladies here will give you a boost. Your treatment will be back on track soon.

Best wishes, and a hug from the U.S.

Stephanie

[bamboo89]

Oh dear not surprised you want to cry - maybe you should, a good cry is often helpful. I'm so sorry about your brother and the fact you can't attend his funeral, these times are very difficult aren't they. As for the chemo thing, yes, infuriating - I have noticed things seem more fraught with my oncologist - he can't even fit me in for blood tests and a call two weeks running, which he should do, but they are exceptionally busy, probably playing catch up with all the patients who didn't get seen or treated during the long lockdown.

Just to say, despite the frustration over chemo, missing it for one week won't matter - I had two postponed by a week on different occasions and my CA125 continued to fall in the missed week...

Best wishes and once again, sorry for your loss

Miriam

[Neona]

I’m so sorry to read about your brother. I , too, have an elusive oncologist. Busy or not there is no excuse for this. I live well over an hour away from the hospital and would be fuming.

[Lizzieanne]

So so sorry so much to cope with. Thoughts are with you x agree Macmillan would help

[candyapplegrey]

My third chemo was delayed 3 weeks or so as I had a problem with my heart. Oncologist did not seem bothered by the delay at all. Didn't seem to think it would make any difference so don't worry. But I sympathise with the failure to authorise thing - that happened at my first chemo. Plus I was sent away when transport got me there late one day even though everyone told me they wouldn't do that. Told to come back the next day. It's as if they don't care how much they inconvenience you, the patient.

I lost my Dad during Covid, then very next month got the cancer diagnosis but at least I was able to arrange and attend his funeral. Condolences. It's very tough.

You would think that the chemo team would call you if they hadn't received authority then at least you wouldn't have had the wasted journey.

I've found my care has not been joined up at all so appreciate your frustration.

Can only suggest deep breathing and relaxation. Try to let it go. Easy to say but I am really bad at doing it.

Candy x

[LesleyGB]

Hi. I am so sorry about the loss of your brother - what a horrible time you are having. My chemo was stopped for about 5 weeks before I had my operation. When my CNS rang to cancel my session, I told him I was concerned about not having any treatment for so long and how it might impact on my final outcome. He assured me that the chemo stays in your body and working for 6-8 weeks after the last dose. It didn't seem to have had any detrimental affects on me and my CA125 kept dropping. Do try not to worry (easy to say, I know) and I do hope you and your family are coping okay with the lost of your brother.

Lesley

x

[27-359 in reply to LesleyGB]

Thank you.