September 2020
Had my planning CT done today and got my tattoos, so it's all systems go for me to start SBRT on 29 September.
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September 2020
1 Kudo
Hi Rikki I'm glad you were able to get that sorted. Can I suggest that you contact Look Good, Feel Better and register for one of their online workshops. I attended one just before covid and it was a great pick me up. I think they're all online at the moment. There was over $500 worth of makeup in the Confidence Kit I was given. https://lgfb.org.au/workshop/
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September 2020
I'm sorry that your oncologist isn't more helpful. My haematologist was always quick to consult with other specialists where appropriate and it was her pushing which got me an appointment with the pulmonary team only a week after she referred me. They, in turn, made sure that I was contacted within days about seeing other clinicians. I absolutely think it's worth finding a new oncologist. You will need follow up, at the very least. Perhaps once your GP refers you to a cardiologist, you could ask the cardiologist who they would recommend.
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September 2020
1 Kudo
I had a high resolution CT scan yesterday to check for fibrosis and if that comes back OK I will have a planning CT tomorrow and start stereotactic radiation on 29 September. I'm fairly OK, although I find the "hurry up and wait" part of this frustrating. There always seems to be one more step before I can start treatment. I will feel better once a plan is locked in.
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September 2020
1 Kudo
I think I would want to clarify why they've chosen 6 weeks as the time for starting palliative chemo. If that's just an arbitrary number, then find out how long it would take for them to organise chemo if you wait until you feel you need it. It might also be worth finding out whether the palliative regimen is the same as the active treatment one or whether it involves different drugs/lower doses.
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September 2020
Hi Rikki I hope the cardiologist is able to give you some relief. Who is your point of contact for side effects/late effects? I have early stage lung cancer, too, and I was given a care co-ordinator's number to phone if I'm having any issues. It definitely makes it easier than trying to work out which particular doctor I should contact.
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September 2020
I'm also surprised by how few support groups there are online and by how quiet most of them are. There was a large and very busy American one which closed at the end of last year with very little notice and it was a huge loss. I've recently gone from getting news on 14 August that I'm in remission from lymphoma to having it confirmed last week that a mass in my lung is primary lung cancer, so I can somewhat relate to trying to wrap your head around something new and its implications for your current and future life. Please keep us updated with how you're going.
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September 2020
Had a lung biopsy done on Tuesday, so now I wait. I asked the lung clinic to ring me when they have the results but we'll see whether they do or not. Edit. They did ring me and the lung mass is malignant. I will find out the sub-type and the treatment plan when I see them on Tuesday. The registrar made sure to reiterate that it's early stage and that they would be treating with curative intent. I just want to get treatment over and done with before it gets too hot and have a little time to recover before Christmas.
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September 2020
2 Kudos
The short answer to your question is no. Two of my children are nurses and they had to pay for their own vaccinations apart from the ones which are free to everyone (ADT for everyone and a few others for people in specific risk groups) or employer provided. If I remember correctly, the cost for standard vaccinations can't even be claimed as a tax deduction.
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September 2020
I would strongly suggest joining the UK-based MacMillan forums. The information you'll find there is in the context of the UK health system. https://www.macmillan.org.uk/ They also have a telephone support line which operates 7 days a week. https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-support-line
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