Hi there,
I was diagnosed with something called agressive fibromatosis when i was pregnant with my son nearly 7 years ago. Since then i have had two long rounds of chemo, 6 weeks of strong radio therapy, taken part in a drug trial, had a spinal cord stimulator fitted to help control my pain, had surgery 5 years ago to remove a 6 inch round tumour from my shoulder and back in the summer i had my arm amputated. Life is looking better, my condition is not life threatening but its risks never go away and have changed my life so dramatically. Theres a huge part of me that feels this has happened for a reason, that i could help other people pull through their times of need but i also feel so lost. I find it hard to find the energy and enthusiasm sometimes to keep going...does anyone else feel like this?
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about the medical journey you have been on.
A cancer journey like yours brings so many dimensions into life and even through the darkest times we can find hope and great that you feel you can help others on their cancer journey.
I was diagnosed in 1999 with a rare type of Lymphoma - it’s a long story that you can see in my profile by hitting Thehighlander. But I am now over 4 years post my last treatments, in remission from a condition I was told I would never see remission from so boing good. But it did take me all the past 4 years to work out the very bad Fatigue and muscle and nerve damage I was left with....... so can understand some of your challenges in some part.
Can I first direct you to this link to our very supportive Soft tissue sarcomas group where you will connect with others in the same boat.
Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.
This site is organised into various groups so we do have lots of support groups that are Cancer specific but we also have many general Cancer experience groups.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Talking to people face to face can help both you and others a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
