Anyone else having a difficult experience with their cancer Macmillan support nurse?

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Hi all,

Just wondering if it it is just me, but I've been assigned a Macmillan lung cancer nurse, but I don't get on with her at all. She's not helped me whatsoever.

I feel like I do all the running around over appointments. It's me who told her when and where my appointments where. I told her when I went in for my lung biopsy that it was important that I had some emotional support (she'd told me she'd call ahead), no one came, she'd clearly not telephoned.

I'm now into week 3 of awaiting results I was promised within 7-10 days by my surgeon. I phoned her today to be told (like a nuisance) that the lung specialist co-ordinator was phoning twice a day to get my results. I don't actually like her or feel she is a support whatsoever.

Can you ask for a change if you need to? I want to burn this woman's business card! She's horrible. Has anyone had an experience like this?

I had a laugh today, there was an advert on our local bus top, Apparently 'Macmillan see the person, not a patient.' .

Don't get me wrong, I have used the Macmillan support line when I'm struggling, and it's been a great help. But she can do one!

Newbie over 2 years ago in reply to Thehighlander

Hi Mike, wow, not the Christmas present I wanted. I think it's taken me the last 5 days to come around from the shock. It is cancer, but they still need more time to figure out where it is coming from. There's no plan yet, other than refer me onto the oncology team. Radiotherapy is where they are going to start, I think. The surgeon is checking in with me next week, but I do have a new Macmillan nurse, who seems lovely. I am starting to regroup now. I have to put together my own plans - I've got work to deal with (I'm self employed), a health plan (because I need to be match fit for whatever they are going to do next) and make sure I use my mental health support people. Boxing Day was pretty frightening in that regard, but I used my lifelines. I don't know how I'm going to handle this, but I will give it my best shot. Keep talking to me if you can, I need to know this is get through-able. Hugs right back at ya! Helen xx

Thehighlander over 2 years ago in reply to Newbie

Hi Helen, well it is what it is so you just have to put your head down and battle into it.

I was self employed when my condition kicked off back in late 2013 so I called the Macmillan Support Line open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 (but do allow fir this time of year) and talked with the benefits/financial guidance team - they were great in pointing me in the right direction.

Good to hear the Macmillan Nurse is good.

Once you have clear diagnosis you can check through THIS LIST where you will find all our many dedicated cancer support groups listed.

((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Newbie over 2 years ago in reply to Thehighlander

Hi Mike, yes it's all quite complex, but I am coming up with a plan to deal with work (I have a mini me on my team who will be very competent and will learn fast), and will be talking to my accountant when they are back in January. The advice line was great this morning. I've just got so many things to deal with concurrently! I guess a positive is that as I'm going through this, I'm learning to ask for what I need. I told the consultant that the three and a half week wait was the worst of my life. I'm still waiting for them to complete whatever Frankenstein science they are up to. I've told him I don't want any more unrealistic timescales as it makes the wait even worse! And I've been honest with the Macmillan nurse yesterday about the impact it is having on my mental health, so I'm hoping that might improve the meetings and conversations with them. Baby steps, but I'm reaching out for the support I need. It's not graceful, but it is happening. Cheers for coming back to me. Helen xx