It’s been a while, so here’s what has been going on.
You can never predict life and sometimes you’re faced with situations that you don’t expect. I think we are never ready for the unexpected in life, however we always manage to jump into adrenaline mode and get on with it.
Family Emergency Update
My family member was in hospital for a month, I’m glad to report she’s doing ok now. She has a little journey of her own to travel but she will get through it. Thank you so much to all our family and friends for your continuous support. ๐
My Update
I’ve struggled for sometime with one thing or another and my issue is I never seem to get conclusive answers. I feel like I’m in constant
duel with a clock and a doctors agenda. I’m not sure if that is a failing on my behalf because I want to know everything or whether it’s because I’m not ready to be dismissed anymore. I should say I do have a huge amount respect for the medical field but there is occasions that I question, why do we put so much trust in their hands. If anyone knows the answer let me know!
Since my diagnosis, I’ve had to challenge medical issues on a few occasions and I have written before that egos have got in the way. Last week I had an appointment with my Oncologist and he finally confirmed that I do have tumour activity on the liver again, therefore he’s sending me for PRRT treatment next year. PRRT (Peptide Receptor Radionuclide Therapy) is given to patients with neuroendocrine tumours. Therefore, when my tumours on the liver was previously dismissed, it seems that is no longer the case. Was I right to challenge?
Furthermore I’ve recently obtained 6 years of hospital records for the period prior to me leaving for Canada. Nevertheless you can imagine, medical notes do make interesting reading and can be full of surprises. Let me elaborate on this a little further, it was reported that I had a focus on the liver and that my liver function tests were high. Therefore it should be investigated or followed up. Did that happen and the answer is no.
I was taken aback at first when I had read the notes and my first thoughts were, would I have been at this stage of cancer if it was found earlier. I’m not sure to be honest, thank goodness for a slow growing cancer. If thorough investigations had happened then, maybe I would have been in a different place medically today. On the other hand, would I have travelled the world and lived & experienced life in another country. Possibly not, therefore I’m kind of glad I didn’t know. Am I angry? Yes maybe I was for about 5 mins. That’s very typical of me to have immediate reaction and then let it go. Nevertheless those lost years, I ‘ve had a good life and wouldn’t change it for the world.
Yes I know I’m a little meticulous in obtaining reports etc, however I don’t have time on my side any longer. Only this week, I had seen another scan report that refers to another crucial organ, which I may add may not be serious however it needs to be followed up, treated or observed. I do question why are these statements never conveyed back to the patient. I shouldn’t have to get reports to make sure everything is followed up. Deep down, I want to have faith in the people looking after me.
Over the next couple of months I will have more scans, tests and appointments. On the cards is appointments with the Gastroenterologist , Cardiologist and back to the Oncologist. Appointments seem to be right upto 22nd December and then it’s time to relax for christmas/holiday period.
I shall look forward to catching up on all your blogs over the next couple of weeks. ๐
Sorry to hear you have to have further treatment, but good luck with all your appointment, tests and scans x
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Thank you Kath. โบ
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Glad to hear your mom is doing better. With this cancer you MUST be your own advocate. Sad but true. I just met with my Oncologist and told him I was going to try and meet with another specialist and he frowned. ๐ I like making him frown….it means I am on the right track. ๐ He then told me to “go ahead” and “he approved”. I laughed on the inside when he gave me permission…he obviously does NOT know me very well. I pretty much do what I want regardless of the rules.
Stick to you guns!!! Get your reports and advocate for yourself. ๐ You can do it.
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I’m glad he approves that made me giggle. X
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That got me in a lot of trouble when I was younger. I’ve calmed down a little since then….a little. ๐
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Hang in there Kat, I can see all your questions on the forums! Advocate for yourself – you betcha!
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Ha ha I’m getting all the facts before I make moves. KATPOWER ๐
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Kat, you are right, you shouldn’t have to follow up to the degree you are. We should be able to trust in our medical professionals, but they always seems to think they are doing things in our interest. Glad to hear your Mum is out of hospital now. One day at a time, as you know only too well! xxx
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Thanks Simone. X
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Kat, you are right to question anything that doesn’t make sense to you. You are the boss. Your medical team works for you. It wasn’t until a huge mistake was made due to negligence that I stopped handing over my power to my medical team. They are human and that means they make mistakes. My son and I micromanaged everything. My doctors got used to it. Its your life. Your rules. Sending you love and light.
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Thank you, I’ve only just seen your reply. I hope your doing ok.
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Never assume that all those specialists communicate, oftentimes they don’t. Ask your questions, ask them to communicate with each other, send each other the reports, or make a copy and give it to each one of them. They are your medical team, and you, my dear, are the team leader.
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Thank you. It’s constant chase of concerns. I’m on an appointment now to address my concerns. Hope your doing ok. โบ
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