In limbo waiting

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i don’t even know where to begin!

I have ignored my growing lump. It’s hard. It doesn’t really hurt but has recently started to feel different. It’s like a building pressure when you get your blood pressure taken.

i just feel so sad . I feel like I’m being passed from place to place. I know the NHS is over run especially at the moment. I just feel mentally consumed which is not me.

i went to the dr who felt it for a while and then referred me for an urgent ultra sound. I kind of felt certain the ultrasound man saw something.

After nearly two weeks of waiting, I then was called by my gp who referred me to a specialist sarcoma unit for further investigations as it wasn’t a cyst. I waited for again nearly 2 weeks for another appointment at a different hospital. Today I went to a very busy waiting room where there were more people than chairs. After waiting an hour, I went in for a three minute appointment to be asked if I already had an mri scan booked? He’s now referred me for an urgent mri but again was told it could be 3 weeks!

it just seems like so much waiting. I know I need to try and stay calm and not worry but it’s just so hard when you keep displaying so many other symptoms. Whatever the outcome I just want to know. It’s just so distracting when all I want to do is be in the moment with my three kiddies.

Any advice or just words of comfort?

Clioparrot over 3 years ago

Hi Kitty_Cat,

I know exactly what you mean. I had what was believed to be a harmless ganglion/venus malformation removed in August this year.

On 7th October, whilst on holiday in Majorca, I received a totally unexpected phone call to inform me it was leiomyosarcoma....a word I'd never even heard!

On the 11th I had an MRI to check the pelvis area and a CT scan to check the lungs followed on the 15th. Everything was happening way too fast and I really thought my days were numbered. I have been on an emotional roller-coaster since the initial diagnosis phone call.

Today the sarcoma team phoned to say that the pelvis and lungs were free from sarcoma. The next step is an urgent MRI on the foot as they only have images from before the surgery in August, obviously they need to have a clear picture to see what will be involved regarding removing a larger area around the original lump.

The team have informed me that even if the surgery is successful on the foot, I will need to have lung scans done every 3 months.

At least now I am optimistic.

The best bit of advice I was given (albeit difficult to follow at times) : Remember, cross bridges when you have to. Don't face those battles in your mind you may not have to face. Stay positive and lean on those around you.

Love & wishes,

Carol

src60 over 3 years ago

So sorry to read about what you are going through but one thing I noted in your message "all I want to do is be in the moment with my three kiddies". I had to do a living with less stress course to learn that so perhaps something inside you is trying to act as a guide.

All cancer related processes are automatically marked as urgent, though with reduced capacity due to extra cleaning etc due to covid and of course sometimes staff shortages due to staff having to self isolate things can take just a little bit longer.

It often feels that the medics have some big secret they are not letting us know about but it is worth thinking if they actually knew why would they keep on doing more tests.

<<hugs>>

Steve

Kitty_Cat over 3 years ago in reply to src60

Steve I keep resonating on that

“if they knew, why would they keep doing more tests”

I’m hanging in there. holding on patiently until my mri this week. Until then trying to keep myself busy with making memories during half term and not going on the dreaded Google!

thanks so much for the contract and support… means a lot!

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