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Firstly thanks for reading
Just need to get this off my chest
I know everyone must have a sad story or an inspiration one.
I've got know one to let my steam off so I'm afraid you all have it in the neck , sorry
My world and my families world came crashing down in 2017 when both of my parents were diagnosed with cancer.
We were strong as a family unit , we can do this !!! We had no support from anyone. My mam and dad battled through grulling chemo , radiotherapy, surgery, radiotherapy. I can never forget both of my parents sitting in the same room while they had drips in there arms , I should be grateful they can have treatment " we can do this " it seems hardly fair since both parents didn't smoke or drink , not overweight and very fit "why them " ? Indeed why anyone , its fxxxxxx cruel.
It doesnt just effect the person with cancer but the loved ones too. We can do this , no tears , be strong everyone said. I best not show my fears , instead I would laugh and makes jokes.
Finally the day came my dad had his grulling surgery to remove his osphegeal cancer , 15 hrs later hes alive hes saved. Meanwhile in the hospital 2 mile away mam is having her radiotherapy on her lungs.
5 month down the line dads free from cancer they say or remission whoop whoop !!! Mums also in remission whoop whhop !!!
Dads heart not great - more surgery for him so he had a aortic valve surgery in 2018 , whoop whoop hes saved again !!!
Mam has another stage 1 a on the other lung a primary thank xxxx it's not a secondary, more radiotherapy for mum , whoop whoop it's worked thank God for our great NHS !!!
A new spot on my mums pancreas " a cyst they say " please God let this just be a cyst,. Your lung looks more dense they said to mum , let do a pet scan !!!
Awaiting pet ffs
Give us a break please
I really dont know how all you all cope I really dont as theres no support for out there !!!!
Thanks for reading
Lots of love
Forgive me about my spelling I've typed this on my phone
Hope - hello, oh my. what struck me about your post was how much you have had to be strong for them and by being such a tight unit, it does not leave space for you to be supported, upset and have feelings other than being positive for others.
That sounds exhausting and also where do you have time for your own feelings. I know that, for me, without some outlets where I can let off my steam, I am not as genuinely effective with the people I have a caring role for. I cant imagine how difficult it is having both parents at the same time and how much of a strain this must be. Take some time to be kind to yourself and I dont know how you can get a break but a tiny little crack of time for yourself now and again might help.
Thanks for your reply !!!
I do have some time to myself but my mind has a different idea . I just cant seem to think of anything else.
I run , socialise and do lots of things I like but my mind just goes back to worrying , I guess it pretty normal !!! Maybe this is my new "normal" ha ha
I know exactly what you mean.
Lost my Dad in 1994 to bowel cancer (only found at stage 4).
1999 Mum diagnosed with grade 1 breast cancer, cured with surgery, no follow ups needed.
2001 Mum diagnosed with grade 3 breast cancer again, different type, again cured with surgery, no follow ups needed.
2009 Mum diagnosed with grade 1 lung cancer, again cured with surgery, no follow ups needed.
2015 Mum diagnosed with grade 3 TCC Kidney cancer, removed kidney, but margin positive, couldn't have chemo or any follow up as remaining kidney was struggling.
June 2019 Mum's TCC came back, multiple liver mets and another in bladder, diagnosed stage 4, incurable. Remaining kidney had recovered enough to handle chemo. Now on cycle 4 of 6 chemo, doing ok, holding her own.
The last couple of weeks I've not been coping well. The best way I can describe it is that life at the moment is like watching a car crash in slow-motion. The car is still heading down the road, all looks well, but I know that the wheels are going to come off and it's all going to go downhill. It's like bloody cancer won't leave her alone. We're just sitting here waiting for something to happen. No idea if the chemo is doing any good and we won't know until the last cycle is finished. I'm not sleeping well, waking up at three am, ending up going to gym at 5 just to burn off the stress, am mentally, physically and emotionally knackered.
Trying to stay positive for my mum, and keep normal life going for my kids (they know Nan's got cancer again, but we've not told them it's now incurable), and feels like I'm failing everybody.
It's so hard trying to keep normality isn't it ? I try all the time , I keep busy, I socialise with people I laugh but deep down I'm so so sad , worried , anxious and feel so sorry for both of my parents. And to top it all theres no support for either of my parents or our family. This is the new normal and I have to cope.
Be strong , supportive , keep busy easier said than done isn't it when you knackered as you said.
You hit the nail on the head regarding "car crash " mine is like a never ending roller coaster and feel like I'm hanging upside down and not moving lol
Take care Chris
Your comment about the "new normal" is exactly right. Thought that the other day, my sister had taken mum for chemo, and sent me a message saying chemo all done, and I didn't bat an eyelid. Mum's just had chemo. That's the new normal all right.
Have your parents not got a Macmillan nurse assigned? I've always found they've been absolutely brilliant (especially when I had a full on meltdown in hospital while Mum was being examined in the next room, we'd just been told it was incurable and I just lost it). The whole situation would be far worse without them.
Both my parents had nurses but they were specialist in that particular cancer ( employed by the NHS ) do mcmillian nurses really exist , I dont think we've ever seen one.
We were told mam had cancer and that was it and then a few weeks later we were told dad had it too, we were just left. The only people I've came across is the chemo nurses, consultant s , specialist lung & osphegeal nurses and the oncologists.
You just have to get on with it !!!
You must of been devastated to hear the words incurable? I would be having a meltdown too. Try and stay positive I know its probably hard but there is alot of positive stories on here about incurable patients iving a relatively "normal life " ( I love that word ) years and years later after they have been deemed incurable
Thats just awful having to deal with both your parents being diagnosed, my heart goes out to you and them.
As for Macmillan nurses yes they do exist and I believe are part funded by NHS as well. My mums has been awesome. They act as a first point of contact for us and are really good at getting answers from consultants etc.
You are right though, you just have to get on with it. I’m just hoping that the chemo has done some good at the moment. Trying to be positive but also trying not to get my hopes up as it’s a nasty rare form of kidney cancer that she has, and it’s an aggressive one. I know there is a difference between incurable and terminal so we are still hoping it can buy time.
fingers crossed all goes well for you too
all the best
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