Hello from Melbourne! I am 35 and a carer to my 92yr old grandmother, who was just admitted into hospital via emergency after a Barium Swallow showed a reasonably well circumscribed circumferential narrowing of the oesopagus. The findings state that it is typical for a stenosing annular carcinoma, however since having a stent inserted to help her swallow fluids and puree foods the oncologist hasn't given any further information.
Pre-hospital admission I went through a range of emotions of preemptive grief and loss, and now I am in carer mode trying to look after my grandmother at home, as well as get her through radiotherapy due to start at the end of this week. From my understanding the aim of the radiotherapy is to reduce the mass so the stent can be removed, I think the oncologist said the site of the carcinoma is fairly contained - however not much more info at the moment. However my grandmother is now undecided to go through radiotherapy and I feel the word crashing around me again.
Going back two years ago my grandmother had another hospital admission via emergency to remove another growth from her colon, which was of a fair size and described as a slow-growing formation. She recovered from that very well considering her age and has been fairly independent since.
I have an awareness and knowledge of cancer, however this is probably my first personal experience. In my early teens my grandfather died after a prolonged struggle with prostate and lung cancer, which I was protected from in the last few weeks by being sent away to overseas family. My father, and my grandmother's son, died two years ago of cancer, however due to geographical distance and family issues I do not know the exact cause.
At present I have taken three weeks away from work to be at home since my grandmother now sleeps a lot of the day and struggles with her food. I am feeling pressured to return to work or to look into external support services. I've unknowingly been an active casual to part-time carer for my grandmother for the past ten or so years, however we've never accessed any financial or social help. Our family is overseas, and my cousins and aunt who live nearby are unaware of the exact reason why she was in hospital and have been of very little support in the past.
I'm so sorry to hear you are going through that. It must be tough caring for your grandmother on your own.
The Cancer Council provides transport which might take the pressure off you when your grandmother starts radiotherapy (especially if the sessions are everyday like my Grampa had!) If that's something you would be interested in just give them a call on 13 11 20. They also provide home help as well which might be worth looking into.
In regards to financial assistance, the Cancer Council has the capacity to provide this (not sure how much they give). You might be eligible for the carer's allowance through Centrelink. The social worker will know all about these as well as assistance available for care at home. So if you want to further discuss what options you have, just ask the oncologist for a referral to the social worker.
Take care x
Thank you Nello. I will hopefully have a chat with the treating radiologist next week to organise a referral to the Palliative Care team, as well as discussing what other supports are available.
Feeling unsettled again as she was initially not wanting radiotherapy, then chatted to her GP who persuaded her, and then I spoke with a lovely telephone peer counsellor who made me re-think the need to go through with radiotherapy... I just don't want her to go through unnecessary treatment 😞
Yeah, I know what you mean about not wanting her to go through unnecessary treatment. At 92 you really have to weigh up risks, benefits and quality of life.
My grandfather is also in his 90s and I think that in his case, having radiotherapy (for a skin cancer - squamous cell carcinoma) wasn't really beneficial. It made him so tired. It was a bit of a hike to the hospital as well - about 1.5 hours each way. He didn't do the driving but I'm sure it would have compounded his fatigue. Eventually he chose to stay closer to the hospital during his treatment. Unfortunately while he was there he had a fall which he is still recovering from. The joys of getting older! He has never had any scans so we have no idea what effect the radiotherapy has had so not sure what the whole point of it was...
Hope things settle down for you soon.. it sounds like they are starting to.
Nello, how is your grandfather doing now? I wonder if he may be able to ask for or request a scan to find out what effect the radiotherapy has had?
Things settled briefly and now it feels like we are back to deciding if radiotherapy is the right way to go. My grandmother is so tired the last few days that I feel treatment may exhaust her more. Then again it may be due to her lack of appetite and small meals, and not the cancer.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.