|
Post by clt80 on Aug 12, 2021 9:54:03 GMT
You're right, I think I will look at the Macmillan site and join today. I totally support people being honest and having an unfiltered outlet to tell their experience etc but at the moment I think my emotions are just too raw. At least until next week when I know how the land lies. My mum is off work today, I need to look after her. She has lost half a stone in weight and said her hair has been falling out Up to the Op I was very careful to be nothing but positive around my folks, well around everyone really as I didn't want them worrying. But certainly post op in the early days whilst in hospital i couldn't filter anything from them, I was either in pain or too drugged up and I just didn't have the energy to hide it. Hubby has been amazing, he is quite a stoic person but has let me be me and tell him exactly how I am feeling without me having to worry what i am saying.
|
|
|
Post by ffiscool on Aug 12, 2021 10:13:38 GMT
Totally get what you’re saying. Use those sites when it works for you or your head space can take them.
It’s very Hard for family and friends. I’m glad your hubby is as he is.
|
|
Oct 6, 2011 7:41:27 GMT
Marianne Marlow
Administrator
George, Daisy, Iris, Billy, Peter, Chipper, Dinku, Barney, Ayla and Rocky
Posts: 28,776
|
Post by Marianne Marlow on Aug 12, 2021 12:10:59 GMT
clt80 I have a similar experience on being in groups and following things on my own health matters. I am a member of a Pulmonary Fibrosis (I have PF) Group on Facebook and most days people report of a loved one passing away. So occasionally I have to leave and then rejoin the group. I've known around 8 FB friends pass away in the last 10 years of PF and it's very depressing. When people have IPF it's considered a terminal disease, but I have PF (which means part of the cause for the disease is known, mines autoimmune related and seems at the moment to be stable with medication) Sorry I am meant to be empathising, I don't want to take over your thread.
|
|
|
Post by ariella on Aug 12, 2021 12:55:22 GMT
Cheryl, it’s amazing how we can put on an act when we feel we need to but I think it’s good to also be honest and it’s wonderful that your husband is listening to your feelings. I think as much as someone can try to put on a brave face, those closest to them also feel worried and stressed and I wonder if it’s stress that has made your mum unwell. She’s probably lost her appetite and is worrying a lot. I can identify with your husband as I was very stoic and very practical when my hubby had cancer. I went to the hospital appointment pre-surgery with an A4 piece of paper with questions. I’d been researching his cancer so I understood all the medical terms. When the registrar was done with me cross-examining him, he asked if hubby had any questions and his only one was “How soon can I play golf?” I didn’t let my facade slip and at the time we had three young children aged 7, 4 and 2. We told them about cancer, that daddy needed an operation and some treatment and would need lots of time to rest and recover. We didn’t hide it from them and they came to the hospital with us for his daily radiotherapy as I didn’t have someone to leave them with at that time. I think it took a while to sink in what we’d actually gone through, but at the time we didn’t have to try and pretend anything in front of them, they understood at their level and now they’re all adults, they can’t really remember much about it, definitely no fear. No one should have to hide their feelings and it’s better to feel you’re all going through it together in some ways. Nothing will stop people from worrying, no matter how much a brave face you put on; they’re probably doing the same. I think from the little I’ve read, you’re doing marvellously and it is good to get back into some sort of normality and that helps the time to pass. Hope the Macmillan forum is as good now, but just dip in and out where you’re comfortable and let your emotions day to day guide you. There’s no hard and fast rule. Everybody’s experience is different, so do whatever is right for you. Marianne Marlow, it must have been such a worry getting Covid when you have PF. Thank goodness it didn’t affect your lungs. Autoimmune diseases are so annoying in that the body just turns on itself and attacks itself. At least your medication is keeping everything stable. I don’t see it as ‘hijacking’ a thread, but sharing your own experiences and being empathetic of similar experiences. I love this forum for its supportive kindness whether budgie related or otherwise.
|
|
|
Post by ffiscool on Aug 12, 2021 13:14:05 GMT
I have a long standing gynie issue that affects the skin and things relate ‘there’. When I was first told what it was, I joined a group, once in person. There were some who couldn’t sit easily, had given up work through pain. I had to come off that group. I manage it and that reminds me, I couldn’t get my annual check up 6 months ago.
But I took from that group what I needed. Learned what non soap to use and other good bits
|
|
|
Post by ariella on Aug 12, 2021 13:19:31 GMT
That sounds just awful ffiscool. It’s good to know others are in the same boat but it’s not nice to see the severity of symptoms other have, especially those who couldn’t sit and had to give up work. I’m glad you’re managing it well and hope your next check up goes well.
|
|
|
Post by clt80 on Aug 12, 2021 14:06:19 GMT
Marianne Marlow You aren't hijacking please don't think that ❤ Sorry to hear that Fran 😞 glad you are managing the condition. Someone once said to me if I cut my leg off it will hurt, if I cut my arm off would it hurt more or less than the leg? His point was pain is pain whether it's physical, emotional,there is no scale of something being worse than something else. Pain is pain and we all have our own problems and sufderings, no one's is greater or lesser than anyone else's. I've joined macmillan, someone said to me they are glad the tumour is out and in the bin! That did make me laugh! My mum came round and took me to the shops, I only went in Holland and Barrett for some supplements and then a book shop, got 3 books so that will keep me occupied!
|
|
|
Post by tweetiepiesmom on Aug 12, 2021 14:27:00 GMT
There's nothing like a good book to capture your mind! I hope you enjoy the new books.
It sounds like you are doing well managing things with your hubby as a great supporter. Being able to make decisions shows you are healing up. Hoping the time passes quickly to Monday and the news is good.
|
|
|
Post by ffiscool on Aug 12, 2021 15:01:47 GMT
Marianne Marlow You aren't hijacking please don't think that ❤ Sorry to hear that Fran 😞 glad you are managing the condition. Someone once said to me if I cut my leg off it will hurt, if I cut my arm off would it hurt more or less than the leg? His point was pain is pain whether it's physical, emotional,there is no scale of something being worse than something else. Pain is pain and we all have our own problems and sufderings, no one's is greater or lesser than anyone else's. I've joined macmillan, someone said to me they are glad the tumour is out and in the bin! That did make me laugh! My mum came round and took me to the shops, I only went in Holland and Barrett for some supplements and then a book shop, got 3 books so that will keep me occupied! All very true. Plus all different pain thresholds. Lol, yes in the bin where it belongs. I was reiterating I suppose that use groups when you’re in the right mindset, take what you can that’s helps you. I came off as didn’t want to think about what mine might progress to as we’re all different, and react differently. I’ve been lucky. If you’re in to baking and can sit and do something, I find baking therapeutic and time consuming. Glad you got out today and saw you’re mum.
|
|
|
Post by ariella on Aug 12, 2021 15:16:37 GMT
Baking and reading are my stress-busters too. Hope you enjoy your books, Cheryl.
|
|
|
Post by willowsmum on Aug 12, 2021 23:59:30 GMT
Glad to hear you had a nice shopping trip with your mum, I'm sure the change of scene and getting out and about did you both good. You'll have to let us know if you recommend any of the books once you've read them. Hopefully they'll be the sort that you can lose yourself in for a few hours.
|
|
|
Post by skysmum on Aug 13, 2021 22:23:13 GMT
Only 3 sleeps now Cheryl before you know, i think the not knowing is the bit that drives you mad, i hate not knowing things and waiting on test results, the mind can be a powerful enemy at times like that. I have everything crossed for a positive outcome for you, meanwhile loose yourself in those books, books are my saviour sometimes
|
|
Oct 6, 2011 7:41:27 GMT
Marianne Marlow
Administrator
George, Daisy, Iris, Billy, Peter, Chipper, Dinku, Barney, Ayla and Rocky
Posts: 28,776
|
Post by Marianne Marlow on Aug 13, 2021 22:59:43 GMT
ffiscool, I have a gynae issue too, since Eve was born I have a double prolapse so I can empathise!
|
|
|
Post by ffiscool on Aug 13, 2021 23:02:48 GMT
Oh no, can it be sorted. Downstairs to me had hers lifted, she’s 92, so definitely things that can be done without major surgery
|
|
Oct 6, 2011 7:41:27 GMT
Marianne Marlow
Administrator
George, Daisy, Iris, Billy, Peter, Chipper, Dinku, Barney, Ayla and Rocky
Posts: 28,776
|
Post by Marianne Marlow on Aug 14, 2021 8:06:02 GMT
I was referred for physio ages ago but nothing has happened yet. I had two appointments with consultants, the first said that the only thing I was suitable for physio ( he said they would not operate because of my lung condition and anaesthetic) and the second said that I could have an op in the future, but only when I am past child bearing age. Oh no, can it be sorted. Downstairs to me had hers lifted, she’s 92, so definitely things that can be done without major surgery
|
|