Update/ remission

Hi Frazzled

Good to hear from you- I had been wondering how you were getting on. 

I am sorry to hear that you are struggling with shortness of breath. If this gets worse then do call 111 for advice.

If it is more generally then maybe this is something you could contact your CNS about for some advice. You could also give the Support Line a call and talk it through with one of the nurses. In the meantime I will pop a link here for you.

Managing breathlessness (macmillan.org.uk)

It is great to hear that you are in remission and I hope that your appointment on the 8th goes well. Do talk to your doctor about any niggling symptoms or worries. 

Are you getting any support with your mental health? I know I felt pretty all over the place when my treatment ended. 

I wonder if this may be of interest?

Online HOPE programme | Macmillan Cancer Support

Jane

Hi there , I too struggled with breathlessness after my radiotherapy , I was just unlucky enough to have had a bad reaction to the radiotherapy and my oncologist put me on a course of steroids for 6 weeks as my lung was inflammed  causing my breathing to be worse and the steroids did help a bit. 

Hope you manage to get some help.and relief for your breathlessness. 

Take care x 

Hi Frazzled it’s lovely to hear from you, and with such wonderful news that you are now cancer free!! You have been through such a lot in the past year, it is understandable that your mental health will suffer. 
Although you have been discharged, I wonder if you will have any surveillance scans or X-rays, just to keep an eye on you. I wonder if this will make you feel more comfortable about your future, or whether you will feel better just getting on with life and not having the worry of scans? Maybe this is something to discuss with your GP. 

Now you have found your way back to us, don’t be a stranger, your experience will really be of benefit to the newbies who are just at the beginning of their journey, and I know how overwhelming you found that. By talking to others here, it may help you to realise just how far you have come. 

Hi Frazzled,

Fantastic news that you are finally cancer free. Gosh, it took long enough didn't it, but you finally got there.

I get that you are worried now. Me, when I got my first prognosis I went into denial about it - 6 months, I don't think so. Now I'm cancer free I'm in denial about that too, I still think I'm a cancer patient. Sigh... no pleasing me.

Anyway, breathing: useful thing to do. My surgeon told me that it wouldn't just come back all by itself, and if I let friends/family gather round to "help the invalid" I wouldn't recover. He was right. It's a struggle but keep doing as much as you can.

I started off by walking up the stairs, just once was enough to knock me for 6. When I was ready I went down the stairs and did a 2nd climb - every time I went upstairs. Then it was a 3rd climb, and a 4th, and so on - until the rest I got from going down left me fully recovered for the next climbs. The fitness fiends call it progressive resistance training - a fancy way of saying keep trying to do more. Keep at it, it'll take way longer than you expect but you'll get there.

kind regards,
Steve

Thank you and yeah I'm seeing a therapist finally after 6 months waiting list. The shortness of breath could be a couple different things as I did have copd but I didn't struggle this much when up and about. But what I thought was pneumonia a yr ago in August was covid2  sars s I found that out by reading medical records. So hopefully the 8th goes good. Everything is alright I think other then I can busy myself today but it will knackered me for three days.. I still don't smoke I just thought by now it'd be alot easier..

Glad they helped. My oncologist discharged me said it was a clear scan and the inflammation was going down. Food still doesn't taste right.. it did during chemo but radiotherapy made it just not taste nice..

Yeah in my head it's probably still there. Hopefully lung doc can convince me different.  I've not let anyone help but a deep clean I paid someone as the strong bleach smells really knock me for a loop.. it's like if I'm holding on to a basket in store I could slowly walk all day but if I'm walking on my own I get winded easy .. feels like like something is pulling down and making me feel short winded. If I stop and lean on something for a minute I can catch my breath.. I struggle to push through though when it gets hard.. more frustrated then lazy though.. just still a yr later( from surgery)(treatment i finiahed at the end of march)can't seem to build my strength up. Hoping to get there though..take care