Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Waiting for results

195600qdg
Posted by

Sorry to be writing again but I’m slowly going crazy with worry.  My daughter had a scan 3 weeks ago and still no results. She rings every day. If you can find my previous posts you can see her story. But briefly, given all clear in August after having mole removed from face. Took an awful lot away and now gets shooting pains. Was suggested just nerve pain from op but best to have ct scan as precaution.  Nearly a month on no results.  They promise to get back to her with every phone call but never do. Gp didn’t request test so say they don’t have them. I’m going crazy. Can’t get on with anything or focus.  On top of all that she’s had a cough for a month. My imagination is going wild.  Especially after reading an article in daily mail on line about a girl in USA who was stage one then one year later after having flu symptoms  and migraines discovered 5 tumours on her brain. Check the article out it’s on there now in the health section.  This is an absolute nightmare and I can’t stop thinking the worst. It’s like  when is this feeling of dread I’m constantly having ever going to go.  How do you cope with all this.  My mental health is suffering to the extent I’m feeling sick and shaking all the time. 

KTatHome
Posted by

Hello ,  don’t apologise for posting again it’s a worrying time waiting for results. It’s not so bad when you have a time frame and can try and put it out of your mind until nearer the date, I can imagine that it’s far worse if you are expecting bad news every single day. 

You ask how we cope, I’m the patient and it helps to be in the mind set of either expecting good results or that if you are expecting something more sinister that they will start treatment as soon as they can. I know for me I usually had a appointment booked at the hospital for when they expected the results to be ready, mostly this was 3 weeks later and recently because of back logs this was 5 weeks. My team were really good recently though and reported back to me within a week when both me an the oncologist could feel an enlarged node. I have a biopsy planned for Friday and then a two week wait for results so this melanoma game is a lot of waiting at every stage I’m afraid. I’m over 4 years in from being told I was incurable and I know sometimes I can’t help but acknowledge how fatal melanoma can be, but also appreciate that today I’m here and would rather be appreciating the day than spend it feeling frustrated. 

Ive never contacted my GP for scan results the drs always get a copy after or at the same time as I do. The oncologist who ordered the scan gets the results from the radiographers and the specialists nurses are tasked with trying to get them hurried up in time for appointments. The other way I look at it is that I would rather have the results when they can tell me what the next step is, that way you get the bad news followed by some good news of what treatment or more investigations are going to happen. When the results are in they are discussed at the MDT multidisciplinary team meeting as to what the best action is, and the nurses sit in on those meetings. I hope your daughter can talk to her nurses and get an estimate of how much longer before she will hear, and that you can both try and put the results out of your mind until then, getting something enjoyable to think about in the wait. 

I was wondering if you had read the Macmillan section on coping, I’ll put the link in or spoken to anyone in the friends and family group, they say it’s harder being the carer and trying to put on a brave face but inwardly screaming. 

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/someone-close-has-cancer

https://community.macmillan.org.uk/cancer_experiences/being_a_relative_/discussions

I know how anxious the waiting can be and it’s really hard. I’m sorry your in that place at the moment and hope you feel you can let off steam here. Please let us know when you hear something.

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

195600qdg
Posted by

Thanks for your reply.  It was her nurse who requested the scan. The nurse is there only one day day a week and despite saying you can call her anytime - you can’t. It just goes to voicemail and they never get back to her.   She was told she’d get the result in a week which was a lie.  The whole experience is bad and stressful enough without these constant mess ups. Lost notes, lost blood results letters going to wrong address. Whilst grateful for the NHS it’s been a terrible experience.  Sorry for moaning but I’m so tired, stressed, disheartened and depressed.  I’ve had cancer scares myself but this it’s a million times worse when it’s one of your children. 

KTatHome
Posted by

Don’t be worried about moaning, I’ve never had the problems you’ve had getting through to the specialist nurses, and they have always got back to me as promised. My only suggestion is to contact the Patient Liaison Service at your hospital to try and escalate things, if you look on your hospital’s website they have probably got a link to their number and opening hours. I’m not sure how old your daughter is, she may have to make that call herself. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

195600qdg
Posted by

Thanks for the advice.  It’s so helpful sounding off on here. At home I pretend to be strong and keep everyone going. You’re the only people I can be open to. Xx thanks again 

KTatHome
Posted by

I once had to talk to my husband about being strong, I needed him to show how he felt to me, so that we could talk together about the scary stuff as well as the keeping positive side. To acknowledge the anxiety for both of us and help each other to see the positives together. I was hearing all the negatives and he was hearing all the positives, and although that was good in some ways it was making me feel like I was being silly for worrying and him not caring about things going wrong, you have to have a good balance and a good talk together I’ve found. Mother to daughter, I’m not sure I’ve got that right yet as they don’t live at home and I have to put an even picture with a positive spin, and as I say I’m the patient, but here as a good place to moan and get the anxiety out. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Katybb
Posted by

Hi

Sorry you’ve still not had any news. I think somehow when it’s yourself you just get through it to some extent, but when it’s someone else you’re worrying about it seems worse. And I’ve not got any kids, so I can’t begin to imagine.

I guess the only positive is that they’d probably be getting back to you sharpish if they were worried... let’s hope that’s the reason for the delay. Also I think the shooting pains are pretty normal after nerve damage through surgery. I’m now 7 months on from my surgery, and it’s only in the last few weeks I’ve not been making random noises due to sudden shooting pains!
I know not of that really helps until you get news for sure, but please don’t apologise for coming here to rant- it’s pretty essential!

I sometimes wonder why I keep getting drawn back to this site even though everything is currently going so well for me. I honestly think that reading other peoples’ experiences is helping me to process what I went through- reminding me that all those emotions were very real and that it did all really happen. I don’t think I particularly asked questions to start with, but this sense of community has been really important to me. SO - the point being, your experiences help others too, so don’t feel bad for expressing what you’re going through.

Fingers crossed you’ll get news soon. Big hugs. X

Kate

195600qdg
Posted by

Thanks Kate.  This waiting is so over bearing.  I can’t focus but people like you so help.  I’ve got to stop reading stuff but can’t help it. But as I said earlier it’s even in the newspaper I read. A big article about a girl in America with stage 1 a year ago now she got 5 brain tumours. I know that must be soo rare cos it made the paper but nevertheless.  Anyway thank you so much for your reassurance. You have no idea how a message from you lifts me. Thank you. 

MH20
Posted by

Hi ,

This isn’t related to my melanoma but I had a CT scan recently and waiting too long for my results. I ended up going online to the hospital website and finding the complaints email address and sending a huge email detailing everything. I received a phone call from the consultant 30 minutes later explaining everything to me and offering an appointment to explain in more derail. Unfortunately sometimes we have to complain to get answers. 
I hope you’re daughters results are in soon. 

MH20

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

195600qdg
Posted by

Thank you so much 

195600qdg
Posted by

I’m so so happy to say at last got the results and all is well.  I can breath again. I can now start to function again properly.  Thank you all once again for your support.