NEW TO FORUM - LOOKING FOR POSITIVE JOURNEY STORIES

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HELLO

MY HUSBAND OF 52, AFTER MANY SCANS, TESTS ETC HAS BEEN TOLD HE HAS CANCER IN LUNG, CHEST WALL, ADRENAL GLAND AND BRAIN.  THIS HAS ALL HAPPENED IN THE PAST THREE WEEKS AND OUR WORLD HAS BEEN TURNED UPSIDE DOWN.  WE ARE NOW WAITING (AGAIN!!!) FOR BIOPSY SO WE CAN FIND MORE OUT.  I KNOW THE DOCTORS CANT REALLY TELL US MUCH BUT THE WAITING IS AGONY AND I AM SHOCKED AT THE LACK OF SUPPORT GIVEN.  MY HUSBAND WHO IS A VERY STRONG MINDED PERSON WHO COPES WITH EVERYTHING AND IS OUR ROCK HAS GONE TO PIECES.  I THINK WE ARE ALL IN THE SHOCK STAGE.

THE ONLY THING ONE DOCTOR HAS TOLD US IS THAT IT DOES NOT LOOK VERY GOOD AND IT CAN NOT BE CURED BUT IS TREATABLE.  AFTER LOOKING AT SOME OF THE COMMENTS ON THIS FORUM, I AM HOPING THAT HEARING OTHER PEOPLE'S JOURNEYS WILL HELP US AND GIVE SOME HOPE AND POSITIVITY AT THIS UNKNOWN FUTURE.

  • HI Bladesfan

    a warm welcome to the group. So sorry to hear about all that your husband and you are going through.

    There's lots of positive but realistic tales within the community and I'm sure others will be along shortly to share theirs. This is a safe and supportive space.

    I'm supporting my husband through his stage 4 brain tumour journey (glioblastoma). He was 50 when he was first diagnosed in Sept 2020 and his diagnosis was terminal from the word go. Post-surgery the neurosurgeon gave him 12-15 months. That was 3 years ago and he's still with us. G is a fitness freak and a marathon runner and that fitness has stood him in good stead as has his stubbornness! 

    I've learned to accept that any timelines offered are best guesstimates based on published averages and no one is average. Everyone is unique. 

    Since he recovered from his surgery and 6 weeks of oral chemo/radiotherapy (he declined all further treatment in Jan 2021) G has done his best to live life to the full. Covid restrictions slowed him up a bit but since the world has re-opened, he has spent a week skiing in the French Alps, run a PB in the 2022 Manchester marathon of 3:15:28, ran the 2022 London marathon in 3:33:34 (and was fuming that he'd been so slow!), on a trip to London with our daughter they toured the O2 Arena in London including climbing over the roof and he even managed to appear as an extra in Outlander as they needed folk to row a boat (long story in there). He's had numerous trips to London and also enjoyed a weekend in Prague with his pals and a week in Paris with me. There really has been no stopping him.

    Now we are 6 months into the palliative care phase and although he's slowed up considerably, he's still very physically active. 

    Four weeks ago, our local hospice told us he had days perhaps a few weeks and to have all the conversations we need to have.  Today, he pedalled his bike in the garage for 90 mins and then went for a  6/7 mile walk this afternoon. I have no idea how he's doing this but he is. 

    I hope that adds a bit of positivity to your day.

    As I mentioned, this is safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Please make sure you take care of your wee self here too, I'll not lie, this is a gruelling rollercoaster ride and after 3 years of it I am not too proud to admit that I am exhausted - mentally, physically and emotionally. Taking time for yourself is essential here as it helps keep your wee batteries charged and puts you in the best place to support your husband.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong,

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much.

    We are just at the beginning of this journey.  Waiting for results of biopsy in order to see where we are with it all.  My husband is active too, in fact he will not sit still!  We do have amazing friends and family who have all been round and texting him daily, which he appreciates.

    I think once we know more information we can request support and all move forward together, whatever comes our way!!

    Sending you and G massive hug back and I am in awe of your positive energy and fight!

  • Hi Bladesfan,

    I think your story very closely resembles ours, we been married for 40 years this year, recent developments my husband has 3 tumours on the brain which are in-operable, lung cancer and we think his lymph node is also cancerous, tomorrow we go for our biopsy.  Feels like you describe, the bottom has dropped out of my world.  My husband is the positive one and I am trying to copy his positivity, so for now ' onwards and upwards'.  Good luck with your journey.

    All the Best