Award winning Neuroendocrine Cancer Patient Advocate. Diagnosed with Metastatic Neuroendocrine Cancer in 2010.
There’s been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it’s possible the patient would potentially have a much poorer quality of life.
I’ve had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I’m in a much better place than I was nearly in 2010 but I have a lot of people to thank for some excellent progress. My son & daughter’s families have all been there for me and although my 4 grandsons don’t fully understand the situation, their presence in my life is a great tonic.
Perhaps even more focus should be given to those who are supporting, living with and in many cases, caring for cancer patients 24/7 – often routinely taken for granted. In particular, I’d like to focus on my wife Chris who has actually been at my side for most of my adult life.
In London, both serving in the army, aged 19.Our wedding day 29th March 1975
I don’t really need that much physical care from someone else, I’m lucky in that regard. But emotional support can be just as important. She was there when I received the bad news and she helped me break this news to others. She was the first person I saw when I woke up after major surgery. Since diagnosis in 2010, she’s been watching over me when I’m not quite 100%.
Charity ball in 2011, attended by my surgeon and interventional radiologist.
This emotional support extends to motivation and general encouragement. She was singularly responsible for getting me fit enough to be able to fulfil a long-term ambition to walk the entire 84 miles of 2000 year old Hadrian’s Wall in 2014 and she walked every single mile with me. I recently wanted to walk up a very big hill in Wales and she was there too. I’ve been on many walks outdoors when I didn’t really want to go but always ended up thoroughly enjoying it.
What is Satoreotide? It’s an agonist treatment. i.e. a ‘next generation’ radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as
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Totally agree, My wife has been caring for me for 5 yrs. Because of all these Dr.s visits, hospital stays, imaging and blood draws seems like a forever ago since my dx. with no relent, even when she is not feeling well herself she puts on a front for me to hide it from me. I can always see it and tell her she needs some caring to. I can see the stress of it all.. the not knowing building up until the Drs. Tell me I’m doing ok for another 4 months and then having to go through it again and again is not good for one’s soul. She has lost a lot the last 3 yrs. Recently a brother from covid. and about 2 1/2 yrs. ago another of her brothers passed from pancreatic cancer, took him pretty quickly. And then add what’s going on with me what a “Molotov”. She is my rock, without her not sure where I would be at this point. I need to focus some attention on her like you said..they should make a worldwide holiday for them, a weekend commemorated just for them probably need more than a weekend but this would be a start.
So agree – over the last few months my husband of 48 years has been my rock – listening, caring after my surgery, nagging sometimes but always there, they are worth a million prescriptions as are many friends and familyxx
Another aspect – when Angela had cancer she seemed so far away. We love in the east of the country and she lives over on the west. One of the hardest things was knowing hug may help her but we weren’t there.to give her one. Me being disabled didn’t help as I couldn’t just jump on a bus or train and go to her. Her now husband and his family were fantastic but we just felt it should be us helping. Sorry this is the first time I’ve put this into words. Chris I know what it’s like. Ronnie I think you are doing a fantastic job and wish you all the best.
Totally agree; love and care required for those who do the 24/7 care, often with many balls in the air, whilst the focus is on the person who is suffering from the illness. Perhaps it is worthwhile considering taking the carer for a pint or having her nails painted, whilst letting someone else visit the patient in hospital, who often finds talking to vistiors, who are trying to do the right thing, exhausting. Worth considering when someone you care for is seriously ill.
Totally agree, My wife has been caring for me for 5 yrs. Because of all these Dr.s visits, hospital stays, imaging and blood draws seems like a forever ago since my dx. with no relent, even when she is not feeling well herself she puts on a front for me to hide it from me. I can always see it and tell her she needs some caring to. I can see the stress of it all.. the not knowing building up until the Drs. Tell me I’m doing ok for another 4 months and then having to go through it again and again is not good for one’s soul. She has lost a lot the last 3 yrs. Recently a brother from covid. and about 2 1/2 yrs. ago another of her brothers passed from pancreatic cancer, took him pretty quickly. And then add what’s going on with me what a “Molotov”. She is my rock, without her not sure where I would be at this point. I need to focus some attention on her like you said..they should make a worldwide holiday for them, a weekend commemorated just for them probably need more than a weekend but this would be a start.
So agree – over the last few months my husband of 48 years has been my rock – listening, caring after my surgery, nagging sometimes but always there, they are worth a million prescriptions as are many friends and familyxx
All the best to you both in your challenge, will be thinking of you.
Cheers Ian, we didn’t need to call you, we made it 🙂
Another aspect – when Angela had cancer she seemed so far away. We love in the east of the country and she lives over on the west. One of the hardest things was knowing hug may help her but we weren’t there.to give her one. Me being disabled didn’t help as I couldn’t just jump on a bus or train and go to her. Her now husband and his family were fantastic but we just felt it should be us helping. Sorry this is the first time I’ve put this into words. Chris I know what it’s like. Ronnie I think you are doing a fantastic job and wish you all the best.
thanks for your support Irene. Sounds like you have been reflecting which is good! Ronny & Chris
Totally agree; love and care required for those who do the 24/7 care, often with many balls in the air, whilst the focus is on the person who is suffering from the illness. Perhaps it is worthwhile considering taking the carer for a pint or having her nails painted, whilst letting someone else visit the patient in hospital, who often finds talking to vistiors, who are trying to do the right thing, exhausting. Worth considering when someone you care for is seriously ill.