We’re in limbo!

[LewLew19]

So mum had her CT scan on Monday. We’ve since had a letter to say the phone call with the doctor isn’t till mid September?! Surely that cannot be right, especially as they brought the scan forward. Or we’re now wondering if they’re scanning her to check lungs due to cough.... is that standard practice? Maybe this is to check for infection.

I don’t recall waiting that long to hear scan results previously and mum will have another treatment before the phone call. We’ve tried to call the doctor a few times but haven’t heard back yet. We’re just not certain if we are expecting a call sooner, and the September appointment is another one booked in!

All very confusing and adding to mums worry. She is still coughing, no worse just the same and has the rash. We’re just hoping this is all treatment related and nothing to do with the cancer itself. It’s very hard not to jump to conclusions!! The CT scan fluid really irritated her chest. Not sure if that’s normal! Thanks x

[JanetteR57]

sometimes it can feel like left hand right hand not talking to one another.... the letter has probably been generated by the request for a regular follow up and may not be related to the timing of the CT scan.... it may be that they'll phone with results before then or write. I had an outpatient appointment on 15/5 face to face which involved chest x-ray and blood tests and the consultant said to me, I'll phone you if there is anything untoward, otherwise I'll write.... I read the letter several times when it eventually arrived in late June to find the results but the only statement was 'chest x-ray nil acute/bloods satisfactory' ....

It's good you have the September one booked in - over the years I've tried hard not to get too anxious especially when hospitals rearrange or delay appointments which often happens at this type of year due to staff annual leave/availability and that's without the pandemic that's heightened the anxiety and issue of those who've been working having to take annual leave before any second spike happens...

I agree it's hard not to jump to conclusions but not everything we experience is related to the initial diagnosis, we had other things before and this continues after our diagnosis. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me no end in putting symptoms into context....

I've had several CT contrast scans over the years. but not had any side effects.... it could be that the cough/chest irritation are infection or something, not related to the scan... just a thought... does she have a CNS she could call? I know they're very stretched in many hospitals as many were redeployed to help out with covid but also know many hospitals are returning staff to their 'substantial' posts.... good luck.

[LewLew19 in reply to JanetteR57]

Hi there. Thanks as always for your kind words of assistance. As mums doctor has recently changed we think there’s been some mix up and we’re waiting for confirmation from the doctors secretary. She’s phoned twice now and will follow up next week.

She’s really nervous about scan results as we always are, but this time there’s no certainty of when the results might be communicated. Hopefully it will be resolved next week. Mum is now quite certain it’s the treatment, her rash on her back continues to itch, along with the cough. Hopefully we can rule out or treat an infection if there is one.

She’s got cough medicine, but says it can irritate it even more. I wondered if they might even give an inhaler to help. I hope we can help her to manage these side effects if the treatment is shown to be working. It’s certainly a better option than the chemo she had before.

Not sure if she has a CNS, my dad has a list of numbers he’s simply going to ring to find out what’s going on next week. But for now, we've given them some time, I can imagine they are incredibly busy.

Thanks again

[JanetteR57 in reply to LewLew19]

as you say the rash is most likely to be the treatment... if she doesn't have a CNS , ask for one - it is part of the National optimal lung cancer pathway to have access to one so at least if you ask, they'll need to sort her out somebody to contact.

As you say, often we have a list of numbers and it's never clear who is for what - Roy Castle booklets suggest some questions to ask and also names/contact numbers to write down against 'consultant, CNS, secretary etc..' and for most of us working out who does what can be complicated (and shouldn't be in my opinion)...

When I have bad chest infections and hospitalised, I'm often given nebulisers but also saline nebulisers so wonder if steam inhalation may help her. I don't have a nebuliser at home or need one usually. I have sometimes sat at the steam room at my gym when recovering and not able to do as much swimming as I'd like as do find it helps but know these facilities aren't open yet. Leaning over a bowl of steaming water with a towel over her head may help....

hot drinks and sucking soothers sweets by Halls I find helpful - -as it's trying to stop the irritation because once it starts, it can be hard to stop and cold drinks don't do anything. hope she gets some relief soon... and reassurance for you all...

[LewLew19 in reply to JanetteR57]

Thanks for the tips. I shall pass them onto mum to see if they will help! We will get on the case on Monday.

The irritation is exactly as you describe, once something sets it off she has a coughing episode and struggles to stop, I think the CT scan fluid did this to her. But this doesn’t happen too often.

Going into the new week with positive thoughts and outlook. We will get to the bottom of it and I hope/pray/believe that this is all the side effect of a treatment that is working, first two scans were good, so we’re going for a third

Thanks again. I can’t tell you how much your words of advice, support and reassurance have helped me. X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Lew Lew 19

Janette R57 has given you good advice based on her experience and I agree with her to contact your mums' lung cancer nurse specialist(she should have been given contact details).If you would like to speak to one of the nurses if you are anxious please give us a call 0800 358 7200. Our lines are open today till 4.00pm.

Regards,

All the team at the support helpline.