Today was D Day
Hey all, So today I have gotten from my GP a preliminary result of stage 2 IDC involving the lymph nodes. HER negative and hormone receptor positive. Still need to do more tests to see if it’s spre...
Forum Discussion
Sorry everyone for dropping off the face of the earth- things have been super difficult for me and I have kind of withdrawn into myself a lot.
First update since the last one I posted was that back in January I had a rather dramatic time getting port bloods taken and ended up with chest pain, a code blue called on me in the chemo suite, rushed to emergency with several days in hospital and left with a bad dose of covid for my trouble! During this time I also found out that I have arthritis in most of the major joints of the body- shoulders, sternum, hips and knees. The intense pain I have experienced almost daily since has finally been managed with heavy painkillers, which I take almost every day just to function. My right hip seems to be the worst, so it seems my symptoms were exacerbated by the paclitaxel.
One of the nurses was trying to help me figure out why this pain might be happening and found a study on how the pain can be an early sign of peripheral neuropathy. Well, 2 weeks later I started getting those symptoms- mainly in my right thumb and forefinger to start, but it has spread. I have also developed motor neuropathy in my left leg and have had to swallow my pride and start using a walker. I finished chemo a week ago today, managed 11/12 doses and refused to do any more. The last dose has turned out to be a doozy and I have been very unwell and the pain has not reduced as I had hoped.
One final bit of not so good news- my income protection claim was denied. The reason they stated was because the department revoked my authority to teach due to my medical condition, and I was not permanent nor had a contract that they were under no legal obligation to pay. I have been beyond devastated and my mental health went from coping pretty well to really being on the edge of a crisis. The isolation I have felt as even my family has stepped back in their level of support has been another blow when I needed it least. I have managed to get into the oncology psychologist to supplement my private one, but that doesn’t stop the bills coming.
I just honestly don’t know how much more I can take, and I want off of this terrible ride now. How am I supposed to earn money when I am medically unfit to work, and yet don’t qualify for income protection according to a bunch of boxes that make it not their problem?
Sounds like a very challenging time to say the very least MelV83 - Glad you can come on here to connect with people who care and support your breast cancer experience.
In chorus with the below comments, if you haven't reached out to Legal and financial services - Cancer Council SA. it may be a good time to do so. They can provide advice to cancer patients, carers and bereaved carers experiencing cancer-related legal or financial issues and are unable to afford professional advice. They can also discuss any eligible grants available to to reduce the short-term financial burden on households via payment of an unpaid household utility bill such as gas, electricity or water.
We also have information on our website I am an employee and have breast cancer
Please feel free to reach out to our Helpline 1800 500 258.
SO sorry to hear of your experiences MelV83 xx You've had a horrible 4 months xx. Sending you some big virtual hugs xx
Well done on completing so many chemos - I hope the neuropathy reduces over time .... keep using that walker, until you don't need to - so you don't have a fall. I had a smaller indoors one for my husband to use, as well as the 'outdoors' one, so he was supported, moving around the house.
Do you have a Breast Care Nurse that you can chat to about treatment for the neuropathy & arthritis pains? They really are quite debilitating :( Sometimes, a mix of an anti inflammatory and panadol or similar (taken 4hrs apart) can help - but you MUST eat something when taking the anti inflammatory. xx
Definitely contact the helpline here 1800 500 258 (Mon-Fri 9am-5pm) and the Cancer Council too, as Tri has suggested, as they should have contacts as they would be dealing with this (or similar) on a regular basis. xx
Hmmm, I wonder if there is an Ombudsman 'in that area' that can look into your Income Protection claim being denied as well?
Make haste slowly - concentrate on getting better & take each day as it comes xxtake care & wishing you all the best xx
HiMelV83 it sounds like the past few months have been incredibly tough, you must be feeling exhausted and depleted. Stellar effort on completing the treatment you needed as far as you could in the face of everything.
The income protection decision sounds unwelcome and complicated. Might you call BCNA’s helpline for direction to services who are across these sort of issues when your energy returns.NSW Cancer Council has a service that connects people who need specialist legal or financial help with free professional advisors. An advisor might be able to look into your options to seek a review, and consider whether or not the way in which your employment ended was in line with your rights. Do a search for ‘legal and workplace’ on Cancer Council’s site.
Take care and sending you all good wishes for recovery.
