Scared silly

Hi Redlis sorry to read your post, this is a stressful time for you but let's look for you to get clear answers soon.

I have a rare incurable blood cancer, diagnosed way back in 1999 but I most likely had been living with it for a number of years but I am pleased to say that I turned 67 last year and doing great.

I don't understand Melanoma but I see you have been posting in our Melanoma group....this would be a good place to talk with others who have navigated the exact same journey.

Do also remember that the Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help or just want to chat ((hugs))

I've just read your blog and I can't even begin to imagine what you and your family have been through. It has put my concerns into perspective. I know I have to take each day as it comes and not to worry about tomorrow because you don't know what it will bring. I'm slowly getting there and reading these posts make me realise I'm not alone with my fears and that they are natural, and because of that it helping me to feel less worried. Thanks

Good morning Redlis , sorry for not getting back to you last night but had a busy day helping out at my daughters studio so this tends to result in a couch/snooze evening having to re watch what we were looking at 

From my ‘many’ year experience the cancer journey is what we allow it to be…… we obviously can’t control the actual medical side of the journey (if only we could)….. we are passengers in this…… but what goes on between our ears is totally within our control.

One of the many lessons I have learned over my 23+ years living with my type of incurable Lymphoma is encapsulated in this simple thought….

The road we navigate on our journey has two directions to follow. There are two signs along this road one sign is pointing to Pessimism, a mindset that always sees the worst will happen, not appreciating that the many treatments available can do the job, where stress and worry controls every aspect of life and as a result the journey is made extremely hard and draining.

The other sign points to Optimism, a mindset that is full of hopefulness, determination, confidence about the future and appreciates that the treatments available can turn the cancer tide….. even in the most challenging storms. It’s important to continually seek to choose the optimistic direction as this simple thing can define how you walk out cancer journey.

My great Specialist Cancer Nurse told us this in the early days….. 

“You can throw ALL the worry and stress in the world at each situation and all this effort would actually make ‘no difference’ what’s so ever to what we are told and what may happen in the future....... but it will have a big effect on how we will mentally deal with it ‘if’ it comes along. park the stress, worry when you actually have something concrete to worry about and look to do things that you enjoy.

She also said…… The ‘cancer anxiety train’ is always sitting in the station....... but we can only get on it if we go to the ticket office and get a ticket....... don’t go in the queue and get a ticket…… go for a walk and enjoy it ((hugs))

Hi, I totally understand what you are saying, it's exactly the same as friends have been telling me. At the moment I feel like I'm wandering around in the dark, trying to find the optimistic road. I had a text yesterday afternoon saying I will (hopefully) get my results on the 4th April, so I am now wandering down the route signposted results and feeling slightly better. I know from previous experiences in my life (my daughter being born at 32 weeks and  having a life saving operation at 1 month old, and my son who was born at 35 weeks stopping breathing  on me at 5 weeks old - they are both now in there 30's and fit and well),  that once I know the results I will be able to cope with whatever is thrown at me, it's just the uncertainty that I find hard to deal with. 

Yes uncertainty is hard but the one thing that is certain is that if we were talking many years back the treatment picture would have been much more challenging……. we have come a long way in the past years. You have looked at my story, back in late 2013 I was told the treatment plan I was starting had to work as if not I only had a few years on the clock….. well so far it’s worked but over the past 9+ years two new treatments have been developed for my rare cancer so I have a fall back.

In my eyes…. and based on my experience there is always Hope until Hope runs out…… so let’s agree to keep ahead of the the game and follow the Optimism signs 

Thanks, I will try my best. 

….. and what ever your best is….. it’s good enough

Remember that ‘talking’ can help a lot so why not call my friends on the Support Line teams available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat…… it will help more than you would imagine ((hugs))

Hi Redlis and welcome to the hardest but of all-- the waiting bit.  I'm convinced that there should be a forum of its own on just "waiting"  

It cause so much anxiety, the fear of the unknown and our tendancy to catastrophise stevthe adrenaline going, flight or fight.  

I'm glad you chose to get your mole investigated after a friend saw it. We can see the ones in certain areas often until they become a problem for us.  I had a mole for a year on my arm where I could see it - it was my useless local surgery (the worst in Dorset on the list I believe) who watched it grow very very fast and kept saying don't worry.  So I just kept going back there until it started bleeding- then they took me seriously! But already stage 3c!  

Have you joined our melanoma group?  You do not have to have the diagnosis to be in the group and in fact if you join us you'll be able to see that others have had your journey and then had a benign mole and happily left the group. We are always happy to see that happen believe it or not!  And that's from people whose go or dermatologist has said it's definitely malignant.  So hold on to hope right now as you've not got the official diagnosis.  Try and keep busy too until the results. Now the list of "things to do while waiting for results"  suggestions would be a good place to start with that new forum. 

I'll see you over in the melanoma group x