Frustrating wait times...

[LewLew19]

Mum has been doing very well on chemo. Her cough is significantly better and we’re really hoping that the treatment is working. Oddly her cough and breathlessness appears to come back when she takes the steroids before treatment and then once she stops taking them she seems to improve again.

She had her scan today, booked in just 3 days after her third cycle of treatment . We thought this was quite close to the treatment and worried that it was too soon after.

We did query this but was told the timings were ok. Today we learned that the oncologist is going on holiday and we wouldn’t get the results till the 5th November. That seems like a very long wait!!! I’d prefer to question it, but mum is happy to just accept that there is a wait. My worry is that she should have another treatment in 3 weeks but it’s not been booked in, pending the results of the scan. I guess if they say she should have another few rounds of the chemo then she can just go back on it, with a slightly longer period of recovery?

Part of me wants to just trust the system and mum is adamant it’s not worth questioning but i can’t help but think we should!

Thanks

[Cockailschemocancer]

Trust the system I would say, I have scans every 3 rounds and if my consultant doesn’t contact me one of her team does. Results do take about 3 weeks.

I would speak to a nurse and find out if that’s also the plan if you can? They are there to help and they won’t mind you calling to understand the process as this is their job and they are used to it, but your only learning now how it all works so it’s ok to ask. Good luck to your mum and her treatment x

[LewLew19 in reply to Cockailschemocancer]

I’ve learnt with all of this that patience is so key. Albeit difficult! Thanks so much for your kind words of advice. X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LewLew19

Your frustration is understandable with another wait to find the results.

Even though the consultant is on holiday, he will have registrars or other doctors covering him who can provide the results and schedule another treatment.

Perhaps discuss this with the lung cancer nurse specialist or even call the consultants secretary to ask who will be covering him in his annual leave and can someone contact you with the results. However, if your Mum wants to wait and does not want you to contact them, then there is nothing else you can do.

The GP will also be notified of any results.

You may wish to wait for a few days, then re discuss with your Mum, you will know your Mum best in this.

Even if the her next cycle is delayed a few weeks, this is not unusual with chemotherapy, as some people have to put their treatment on hold until they are well enough or until some of the side effects for them subside.

Steroids do not typically cause a cough or breathlessness, so it may be worth mentioning, if your Mum has not already, to either the GP or the consultant about this.

If there is anything else you would like to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[LewLew19 in reply to RoyCastleHelpline]

Thanks for your advice. It’s so odd, today cough completely gone and she’s linked it to either the treatment or steroids. I doubt she will mention it to her doctors, but if it continues we will try to persuade. As it seems a lot better than it did before, we’re hoping as ever the scan reflects this marked improvement!

[JanetteR57 in reply to LewLew19]

is she on any inhalers or does she have any allergies? these can sometimes trigger cough....I agree with the responses about the system - sometimes we can be impatient and want everything to happen quickly but our bodies have to recover too - bombarding them with treatment isn't easy... and usually there are other team members who cover..does she has a clinical nurse specialist she could ask?

it's hard when we're not the patient as sometimes our parents try to protect us (my dad certainly does when he has his cancer appointments) .

I often have coughs from chest infections but they respond to the steroids usually.... glad she's a bit better and keeping fingers crossed for improved scans...

[LewLew19 in reply to JanetteR57]

Thanks for your advice as always. No she’s not got an inhaler but I’ll mention it, she doesn’t have any allergies that we’re aware of but you never know it might be a cause.

The good thing is the cough was a lot worse when we found out keytruda wasn’t working, she couldn’t finish a sentence without clearing her throat and had trouble sleeping. Now, she coughs every now and then, no longer noticeable so we’re really hoping it’s a good sign and it isn’t an issue at night. Obviously we don’t know, which is probably why we’re so inpatient with these results!

Thanks again x