A little overwhelming!!!!

[WalkerNJ81]

Hi everyone,

Trying to be positive ...... (hating that wording right now) but know it's massively important and wishing everyone positive thoughts and hopes! But can anyone give me their experiences or suggest anyways that will make this period a little easier????

My mum has recently got diagnosed with Stage2 lung cancer and I'm really struggling with the concept that it's been 6weeks since we had the first chest X-ray that showed the massive bugger and she is only just going for a second biopsy tomorrow???? It's sooo hard waiting around to be told let's check this and you might be able to have an operation to remove it but hang on we want to check your lymph node glands and actually you might not have the operation???? Coming up for 7 weeks I feel is such a long time to have no treatment!!!! I am not moaning about any hospital workers/doctors or nurses as they are heros in my eyes but the whole feeling is scary and I hate not being able to anything to help!!!

X

[TraClo]

hi I would suggest you visit your mothers gp to ask them to ask for details of treatment plan but also ask McMillian or your mothers cancer specialist nurse for details of consultant and request a consultation. We did this and got information and details of treatment plan for my husband. This is a terrible time for you all and I wish you well and hope things progress quickly in terms of treatment for your mum. Kind regards Tracey x

[Brogan-12 in reply to TraClo]

Hi tracey hope you and your hubby are keeping well my boyfriend deceided to have a stay in bed day today no 2 days are the same iv been so tierd today slept most of the day it takes it out ov you when I'm watching my lovely partner suffering day in and day out and knowing my homemade remedies wont make him better bless him , I'm sending my love to all with this dreadfull illness love does help xx brogan

[TraClo in reply to Brogan-12]

thank you hows it all going for you now Brogan x

[Brogan-12 in reply to TraClo]

Hi we are having good moments and bad moments never 2 days the same sometimes he just sits staring at tv but not watching it bless him but today he went out to watch a rugby match with a freind for a couple of hours it done him the world of good but its so cold outdoors I worry he catches a chill just waiting for next chemo treatment to come round but staying strong minded at the moment with teears from us both inbeetween times so hard but got to keep fighting hope you and your hubby are keeping well xx

[Brogan-12]

Hi I also hate the hanging about and the waiting time my partner was diagnosed 5 weeks ago hes had 1 chemo shesh up to now another 5 to go sometimes I feel has. Thow when you have to Waite so long it does make you scared its hard for the carer has well I hate the unknown its so hard but your not alone people on this site are lovely and were all trying to fight this and stay positive!! I'm not a lover of the word but it does help. thinking of you and your family stay strong xx brogan

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear WalkerNJ81

We are sorry to hear about you Mum and understand your frustration in the waiting. Tracey provided good advice on arranging to speak to the Specialist.

If your Mum does not have a lung cancer specialist nurse allocated to her, it can be requested via the Specialist/GP. They are a great source of information and support.

Does your Mum have an appointment allocated to her post biopsy? If not perhaps telephone the Oncologist secretary.

A treatment plan is discussed within the Specialist care team and proposed to your Mum at her next appointment. 7 weeks must feel like an eternity to you all and all the emotions that go with this.

The positive aspect of this is your Mum having a thorough check on everything so the optimum treatment can be offered.

We have a free nurse led helpline if you wish to discuss anything on

0800 358 7200

All the best

The Roy Castle Support Team

[Hidden]

Hi there

I understand your concerns and, sadly, can identify with all the different fears and emotions you are experiencing right now....it is a dreadful time.

My mum was diagnosed totally out of the blue with Small Cell Lung Cancer at the end of September, no symptoms leading up to the diagnosis so has been a massive shock which leaves you reeling. I know her world has been turned upside down and she is still struggling to come to terms with it, but I feel in absolute turmoil every day, it is so frightening.

My mums tests were all carried out very quickly, from the chest X-Ray she was called back immediately for a CT scan, followed by a biopsy, then an appointment with the oncologist who arranged an MRI scan the following week on her brain and bones. She had her first round of chemo yesterday (Friday). So from initial X-ray to chemo it was approx 5 weeks in all, and that felt like an eternity, so I can't imagine how you're coping...I think the waiting is the worst part, the not knowing.

I have felt so sick with worry over the last few weeks and now she has had round one of her chemo that feeling doesn't go away, it's just replaced by new worries...what effects will the chemo have, how poorly is that going to make her.

It's an extremely difficult time for both you and your mum, I know because I'm living it right now. I want to put my arms around my mum and hug the damn disease out of her, I want to fix it but I'm powerless and it is the deepest heartache ever.

I can only suggest that you contact your GP, or if your mum has a dedicated oncology nurse they are very helpful, and try to get some kind of timescale with regard to her treatment. My mums cancer is inoperable being SCLC, we were told after the CT scan it had travelled to her lymph nodes and SCLC is harder to treat as it is more aggressive than Non Small Cell so I'm not sure if that has made a difference with the very rapid treatment.

Please do let me know how you get on, it feels like a very lonely journey and a scary one.

You are both in my thoughts and prayers.

Jacqui x

[Jackie46]

I'm now 6 months down the line but can remember it like yesterday. Every day feels like a week. I don't know why everything seems to take so much longer with lung cancer diagnosis compared with some others but it does seem like a long time. In my case from getting the diagnosis there was a mass to having a biopsy was a couple of weeks but then she'll likely be having a PET scan as well to check further on the tumour. From biopsy to having surgery was over 6 weeks which felt like an eternity. It's worth looking at the CRUK website at clinical trials in your area as well. I did this and the drug shrank my tumour prior to surgery.

Best of luck. I know what you're going through and know how hard it is for families as well. Stay strong