Hi I have not tried an online community’s before so am unsure where to start or what to write... I have had a diagnosis of papillary thyroid cancer and metastatic cancer. I have been very unwell for 1.5 years, lost 4.5 stones etc. and have recently had surgery - a full thyroidectomy and removal of a secondary tumour. I was discharged the day after surgery due to the Covid situation. I am healing fairly well although as feeling unwell may need my medications altering ( or additional meds). I have not had the follow up scans/ ultrasound/ Consultations etc due to the Covid situation. I am lucky to get in for the surgery (at a time of chaos) but feel isolated and lonely recovering/ shielding at home.....
I have been a carer for the past 20 years looking after various family members, I have experience of cancer care and palliative care.... and now that I am unwell I feel that I don’t have the care I had hoped for from my family/partner.... This lack of care is not solely due to the Covid situation.
In comparison to the few online extracts I have read I feel lucky that at present I am doing ok.. but the resentment is building and feelings of low mood, anxiety, worries about future treatment, tests etc and managing these feelings alone is very hard.
Hi and a very warm welcome to the online community
I'm very sorry to hear that your were diagnosed with thyroid cancer which has spread and that you're feeling isolated and resenting the lack of care shown to you by your family and partner.
The community is divided up into cancer specific groups so could I recommend that you join the thyroid cancer group as you can then ask questions, share experiences and get support from others who will understand what you are going through.
To join this group just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
You haven't said where your cancer has spread to but we do have a variety of 'secondary cancer' groups which you could join as well if you wanted to. If you click here it will take you to the list which you could have a look through. If you want to join any just click on the name and then follow the same instructions as above.
Obviously I don't know your family circumstances but it sounds like they are so used to you being the carer that they perhaps expect you to look after yourself. You've probably already done this but could you perhaps suggest specific tasks or ways in which you need help to them?
You could download, or send for a hard copy, of this booklet and get them to have a read. They might genuinely not know how to help you and are frightened of getting it wrong. Click on the picture below if you want to read it.
When you have a minute it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
