Melanoma

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

Reflecting back on last May

KTatHome
Posted by

Im just airing some thoughts tonight as I have them whirring round instead of getting to sleep. Last May I was very wound up, due to a recurrence in a lymph node after being off treatment for a year. I took two short holidays one to Cromer while I awaited biopsy results that confirmed melanoma in the node, and another to my cousins in Dumfrieshire while I awaited another scan and a start of going back on Pembrolizumab.

Today Wednesday I should get my scan results, I say should cos I’m not feeling hopeful that my appointment will go well, I’m thinking that due to the bank holiday they won’t be ready and I will be all deflated and cheesed off. It has happened only once before that the results weren’t ready and they did ring me up as promised the next day, as the results are needed to give the go ahead for Friday’s next Pembro treatment. Silly isn’t it, I used to ponder before results day wether the results would be good or bad and now I’ve added a new ponder into the mix, will they be ready. I signed up for my hospitals new app, I can see when appointments are made for me in the chemo suite which is very useful as they have entered dates up to July at the moment. I should get to see test results like scans and blood tests, but none are appearing yet although I had a message to say I should see them automatically now when they are available, which is why I’m convinced they won’t be ready for my afternoons appointment.

I've been putting my positive head on as my scan results might herald an all clear again, now that I had the offending rogue node removed and the ones think Pembro is still working to stop any further potential spread. Just the odd doubt of wondering if the gap in treatment due to surgery might scupper my clear hopes, or the pondering that, if Pembro wasn’t working on that one node what if the rogueness decides to follow into some of the other nodes that were originally affected in 2015. Of course I know there are other options open to me, Dab tram, and ipi, but that would still be a jolt.

Mainly though I’m thinking about last Mays Scottish holiday and how wonderful it was to stay with my cousin and all the walking we did to keep all the anxiety in check, and enjoy ourselves sightseeing in Edinburgh and on the coast and in the countryside. If you had horribly said in a years time one of us will have passed away, i of course would have guessed it would be me. Today (well yesterday) I was planning a trip back up to Scotland for her funeral as a few weeks ago she was diagnosed with secondary kidney cancer, and then the primary as bowel cancer, she fell very ill before chemo could start, she passed away peacefully in hospital at the weekend. So that’s my reality check at the moment, a touch of survivors guilt, and pondering my results and again wondering how I can be the best version of me. 

Well time to try to go to sleep again. 

KT 

lgrgdg90
Posted by

Hi just want to say I am thinking about you and I know what it feels like to wait for scan results. Two months ago I went on holiday for a few days up in Cockermouth with my husband   I was due my scan results when I returned but wasn’t sure how I would get them as the consultant said they don’t like giving results on the phone in case it’s bad news. I didn’t enjoy my holiday due to anxiety and my husband said we now should fit  in time away after results and certainly not a few days before.

My results did come via the phone and was told I had a good response to immunotherapy but wasn’t given any details. I am waiting to see my consultant in 2 weeks to hear about the results but shortly after that I am due another scan. What needs to be done is a consultants appointment 2 weeks after the scan but my appointments are not in line as scan is every 3 months and treatment every 4 weeks.

Anyway enough about me I just want to let you know I am thinking about you and really know how it feels at the moment.

Lgrgdg90
Sailor2
Posted by

Hi  

I'm really sorry to read of your cousins passing. In this terribly sad time its fortunate that you were able to spend such a wonderful time together last year.

I hope everything went well today.

Best

J

Don't wait for your ship to come in, swim out and find it!

KTatHome
Posted by

Hi and thank you both for understanding. I wasn’t wrong, my results weren’t ready. It sounds like this is the new norm with shortages of radiologists blamed, that results can’t be guaranteed to be on time. 

KT 

lgrgdg90
Posted by

Sorry the results were not ready. Sometimes I feel the hospital can’t organise things how they should be  Often I see a consultant when I don’t need to ,wasting my time and certainly theirs. A nurse rings me a day before my treatment to check all is well with a list of questions  and I also have a blood test locally but every 3 months I see a consultant and it never seems to fit with my scan results.

I hope you hear soon and they have told you when to expect the news.Sorry about your sad news regarding your cousin.

Lgrgdg90
KTatHome
Posted by

Good news today, oncology now have the results, no measurable disease on my scans. So fingers crossed it can stay like that for a long time so that the next issue will just be deciding the right time to stop treatment. 

KT 

latchbrook
Posted by

I don't know about good news , that's fantastic news!!!!!!!

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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KTatHome
Posted by

Yes it is, , if they made a movie of this I would have got the fantastic news at my appointment, but a day late it’s still great. So thinking positive treatment every 3 weeks til March possibly, then off treatment and remaining clear for much, much longer than last time, and being normal in retirement. Drat I’m going to have to think of something else to worry about now LOL.

KT 

lgrgdg90
Posted by

Great news. I am so pleased for you. Enjoy yourself without the worry that can drag one down.Thank you for your sensible advice and hope you still are keen to give it. Well done I am delighted for you.

Lgrgdg90
athw
Posted by

Brilliant xxxxx

Stage iii melanoma, WLE, SNB, Axilla node removal.

NOw stage iv - June 2018 Mets in right lung