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The Roy Castle Lung Cancer Foundation
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still numb !!

Where to start where does anyone start, I was diagnosed in Jan 18 with NSCLC in my upper right lung, my GP and Local hospital have been amazing, I have been fast tracked everywhere with non stop appointments, surgery and Chemo, that this last 6 months has left me feeling numb, Have I really been through all this? I think it has left me not knowing who I am and where to go from here.

I had a right upper lung removal and 3 lymph nodes removed on 27th Feb, I then started a 4 cycle plan of chemo on 24th April I was told the chemo is called mopping up as they had removed the cancer.

I met with my Oncology team last week (Great Team) but left feeling oh that's it off you go, I was discharged from him before my last treatment and my next follow up is not till Sept back in the chest clinic I started with in Dec 17.

is this normal ? no other follow ups ?

am I classed as in remission ? what happens now ? shall I return to work ?

is all this normal ?

4 Replies
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Dear Lulu45

Welcome to the forum. Your feelings are quite normal, during investigations, diagnosis and treatments, it is quite intense with many appointments, different professionals and your life takes on all clinical things. When you are discharged, all of a sudden there is a void and you almost forget what your life was like before your illness.

After treatment, usual follow up is 3 to 6 months and that may continue for a few years. If you feel well enough to work, you could discuss that with your empolyer and as you know there may be a phased return. Macmillan has lots of useful information on your work rights, this is the link:

macmillan.org.uk/search/sea...

It is another change in the journey, which hopefully will be more pleasant for you and perhaps use it as an opportunity to do something that is life giving for you and brings you some joy.

Do discuss with your GP or even at the Maggies centres how you are feeling. It is very common and there are plenty support services available. I have placed a link below where Macmillan services explain the emotions involved and where to get support:

macmillan.org.uk/informatio...

You may find it helpful to speak to a counsellor as there is much you might want to explore on the whole experience that you have had. Cancer research UK also has some good information on this:

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our free nurse led confidential helpline number on 0800 358 7200

Macmillan number is 0808 808 0000

Cancer Research UK is 0808 800 4040

All the very best

The Roy Castle Support Team

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Hi Lulu

I have just read your post and am in a similar position myself. My tumour showed up as an “abnormality “ on an MRI scan I had undergone voluntarily as part of an unrelated research programme in January 2018.

Like you I was fast tracked through a series of CT, MRI and PET scans, bronchoscopy and biopsies .

This resulted in an open thoracotomy and removal of top lobe in left lung. Two tumours were in this lobe but there was no sign of any spread to any o the lymph nodes that were removed.

I am currently midway through four rounds of adjuvant chemotherapy and I asked my oncologist at the last clinic appointment what the follow up was when this finished and I don’t think there is anything but an annual chest and abdomen CT scan. Obviously any health concerns I have I would go to the GP. But considering the only symptom I had prior to all this was tiredness ( which I just put down to ageing) I’m not sure what I should be looking out for.

I am sure like you when all treatment is finished I shall feel a bit abandoned and left to “watch this space “ without getting obsessed about it and get back to living a “normal “ life whatever that might be now.

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HI Sandra

when I hear others peoples journeys I realize how fortunate I am,

but I agree with you they say contact us if you have any symptoms, I too had next to none, my oncologist said to me that all my blood tests always showed clear because of the stage I was, if they had shown in my bloods the cancer had advanced, he also said the same regarding an x-ray that if it showed on x-ray it was advance, my oncologist has recommended to my chest consultant that I have a ct scan every three months with the odd x-ray here and there for the next two years. then 6 mnnth checks for the following 3 yrs.

As we both have said being fast tracked with non stop appointments and treatments now is the time as you said " without getting obsessed about it and get back to living a “normal “ life whatever that might be now.

I am trying to go back to work next week for the last two weeks of term for some normality and hope the children will lift my spirits as they have many times in the past.

All the best for your remaining chemotherapy

the links that the support team put on here are good definitely worth a read xx

Reply

I recognise your sentiments and feelings as went through a similar roller coaster back in Dec 2010 and Jan 2011 when I had my diagnosis following a left upper lobectomy. Due to my fitness I had 1x 3 month, 1 x 6 month check up post op and pushed into annual checks very quickly but was told that if anything 'untoward' happened to go to my GP and tell them my history. This has happened a couple of times and I've ended up in hospital - thankfully on each occasion, not lung cancer but the system does allow for urgent 'pick up' even when on 'watchful waiting' when active treatment is over but still in 'follow up phase'. Some areas offer counselling services for cancer patients (separate from more usual psychological therapies) so ask about those. I found speaking with a counsellor very helpful as the 'surreal' feeling and changed world view was only really affecting me. Some people find patient support groups helpful.

Personally I found reading books really helpful on this and recommend 'anti-cancer - a new way of life' by Dr Servan Schreiber and 'Cancer is a word not a sentence' by Dr Rob Buckman - the latter particularly helpful in trying to put into context that not every symptom we have after a cancer diagnosis is related. Bodies are complex things and we often had symptoms before diagnosis and will afterwards but not all relate to the cancer or its treatment so it's important to get our heads around that. I returned to work a few months after surgery and am still working and resumed international travel a couple of years ago and am active. There are some really helpful information resources available on Roy Castle website to help explain how normal your feelings are. wishing you well.

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