Feeling so low: Hi all I've now had my... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Feeling so low

Hi all

I've now had my abdomen and pelvis scan as well as the CT guided biopsy. Received an appointment to see the oncologist on 25th July. Finished antibiotics a week last Thursday - they helped a bit. GP gave me a codine linctus which I take for work and to help me sleep- helps suppress the awful cough. I'm on reduced hours at work for the rest of the month - just means I'm doing a full day's work in half a day but it's good to be busy! Get home and then start spring cleaning the house which I know I shouldn't be doing as it's exhausting but have a burning need to get everything sorted and organised in case I won't be able to do it soon.

In the main I am coping and functioning - told a member of the HR team at work to make sure I do what I'm supposed to. Told two colleagues and of course my husband. I don't want to tell anyone else but I suppose if treatment causes my hair to fall out, I will have to!

I'm embarrassed and ashamed to have lung cancer - it's my fault I have it and I'm about to put my family and friends through hell. Tears threaten at the most inappropriate times then when I take time out for myself to have a good cry, no tears come, and I so need to have a good cry!

On top of all that, just to make me feel even worse about myself, I am still smoking despite being given support to stop. Sometimes I think I'm in denial about my diagnoses, other times that it's the end of the road so what difference. I'm not eating very healthily either. Why am I not fighting this with all my usual determination and energy - is it because I don't feel I deserve to live? Then I think of my poor children left without a mother and I get a physical pain in my heart. I want to make memories with them but I'm so tired and unable to walk far. My husband is coping by carrying on as normal - taking the cue from me I guess. He's working every hour he can, probably due to knowing he'll have to scale back in the near future (self employed builder). I told him of my diagnosis on23rd June and we haven't spoken about it since - it's not that he's unsupportive - I'm usually in bed by the time he gets home or he's flaked out on the sofa from being knackered. I think we both suffer from burying our heads in the sand - if we don't acknowledge it, it doesn't exist and keeping busy diverts your thoughts.

I've cried writing this so it has been cathartic. I took myself off to a beach for some time out because I felt the balloon inside me would burst.

Ready to face another day now.

Apologies to you all for having to read what I can't say to my nearest and dearest - you have become my confidants and a place where I can let off steam. My apologies are because you all have so much going on too . X

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H Aamar. It's good that you feel you can chat to us all here, we've all been through similar thoughts and feelings. This is the worst part of the Cancer journey, having the scans and waiting for appointments, for me it was worse than the treatment! I called the Macmillan helpline and talked to them, they were great. Also there is the Roy Castle helpline. Once you see the Oncologist for the results and discuss treatment you will be able to plan and talk more openly. It's hard to talk to the people closest to you about your feelings because you know they are worried and hurting too. Can you take your husband with you to your appointment and he will be able to hear the results and plan with you? Then hopefully you will be able to talk to each other about it. In the meantime call one of the helplines and off load on this site! Stay strong x

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Thank you Swimdown. My husband will be coming with me - I know from experience it's hard to take in all the info you're given at those appointments and to remember to ask the question you want answers to.

I haven't taken advantage of the helplines yet - I feel I'll just spend the duration of the phone call blubbing, but I guess they're used to that. I may have a lot more questions and different emotions after seeing the oncologist so may well pick up the phone then.

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Hi Amar - you will get through this stage! Guarantee all of us on this site have been just where you are right now and is understandable. I spent weeks cleaning every cupboard and drawer in my house, making power of attorneys etc as in my head it all had to be done before I started treatment! And then clean them again!

I do know how hard it is to express all of you feeling to family, I live alone and was not going to voice my fears and anger (and I was angry) to my two daughters, both of whom have been fantastic. I wasn’t in touch with this site at the time but my specialist nurse and Macmillan were amazing. They also supported my girls a lot in the early months. So contact the nurses on this site or them - it is good to talk, I never really took everything on board until I had those one to one conversations. I acknowledge there is no cure for me but living well for as long is possible with cancer can be a long time.

Don’t blame yourself - it won’t change anything and you need all of your strength and energy to fight this horrid disease. You still haven’t got your results and it is hard not knowing the full picture, I know, but please be gentle with yourself the treatments for cancer are so so much improved since years ago and I am in contact with many, many survivors living with cancer and doing well. I did not expect to still be here as my prognosis was poor but I am and doing ok. Obviously giving up smoking is something you have to deal with but you need to be in the right place mentally to cope with that as well.

Sending you huge hugs and positive thoughts. Take care x

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Thank you Elt79. I know that I will need support from Macmillan etc. when it comes to telling my kids, my Dad and siblings. I want to put that off as long as possible but the prognosis from the oncologist will determine that I suppose. There's just so much to think about. I've started making notes of account log-on's, closing no-longer used accounts and generally rationalizing and downsizing my paperwork - have shredded reams of paperwork. My husband finds the admin side of life quite stressful so I'm doing what I can now to make it easier in the hopefully much longer term. The whole process is helping me feel useful and practical!

I'm glad to hear you are doing well despite your prognosis. X

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I did at lot of that too! Quite cathartic I found, totally understand you. Positive thoughts and best of luck keeping 🤞🤞💕

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Dearest Aamar

Your post is welcomed here ,I’m glad you took the chance to offload and it’s safe to do so on this site.i don’t imagine there is a lung cancer patient on this forum that doesn’t empathise with some or all of your heartfelt post, I just want to say that you’re coping with this diagnosis the way you can, the way you are able to at this point in time . I hope that you ,your husband and family reach a place where you are able to share the emotions that come with having lung cancer and find ways of coping with the turmoil thrown up by this illness . I also thank you for your honesty and on being brave enough to share your situation with us , we understand !

I send you my best wishes and be kind to yourself as much as you can .

Jane x

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Thank you Jane. It is truly a great site. I've never been one for posting on social media or anything like that - generally just keep myself to myself but it is so good to talk and receive replies from others like yourself who have at one time had similar feelings and concerns. It truly is a journey that if shared becomes more bearable and gives hope.

Thanks again. X

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Understand your frustration and anger at your diagnosis. Do not blame yourself - I have never smoked yet was diagnosed with lung cancer in Jan 2011 after having had half my lung removed and a 7cm tumour. Yes, smoking is bad for your health - but not all lung cancer is caused by smoking. People with diabetes and heart conditions do not blame themselves yet they are also lifestyle driven conditions. If you can get help to quit, then do so but for now, save your energy - physical and emotional to focus on the things you can do now. Guilt and stigma surround lung cancer (one of the reasons it's so hard to raise funds for the charity/cause) due to belief it is self inflicted - many smokers develop a type of lung cancer that isn't smoking related and many other cancers are related to smoking (including head and neck, bladder and others) yet do not have the stigma of lung cancer. For now, reach out for support wherever you can find it and do try the cancer nurse specialist or telephone helplines. Try not to be embarassed or ashamed - with over 46000 people diagnosed in the UK every year, we don't need to add those emotions to the overwhelm we may feel. there is a lot of good information in plain english on the Roy castle lung cancer website about treatments, types and living with it. I work, travel and swim - what I know now is that I was fortunate to be offered surgery but there are much newer treatments around now and combinations of other treatments so here's wishing you every bit of luck as you start on your journey. It's normal to be exhausted with any cancer but one that affects your breathing can be a double whammy so storing up all your emotions/anxiety will add to that fatigue (as probably disturbing your sleep too). Take care and good luck.

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Dear JannetteR57

Thank you for your lovely practical reply. I often wonder how I would feel if I was a non smoker and got lung cancer - I guess the anger I'm directing at myself would be directed elsewhere. I'm so sorry for what you have/are going through, through no fault of your own. That's cancer though - doesn't discriminate.

You are right in what you say about saving my energy. So much of what I feel is due to past events and things I can't control so I know I need to concentrate on the here and now and focus on what I can do to help myself.

Thanks again. X

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Thanks for your kind words. I'm not angry - more curious and therefore immersed myself in finding out more. It's now reckoned that 1 in 2 of us will develop a cancer in our lifetime - from a malignant mole removed to more serious forms so not a question of 'why me?' but more 'why not me?'. I've preferred to focus my energy and efforts on recovery from treatment and helping raise awareness in many quarters that anyone with lungs can develop lung cancer and that many contributors are yet unknown so we need to do more to protect them - whether from air pollution, other chemicals or substances and also look after our general health whilst knowing the symptoms that should prompt us to seek clinical help. Like you, I have stopped wasting energy - physical and emotional on the 'what if' and 'if only' and focus now on finding out more and dealing with the 'what is'. good luck.

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Dear Aamar,

I could write pages.

First, I'm astonished at how well you have coped. I have hardly done a stroke of work in the 4 months since my diagnosis. I am past the retiring age, so I retired. I don't think it was the cancer that made me so feeble, but the shock. After a while I got used to the idea of having cancer and things got a bit better. I too was frequently reduced to tears, often by the kindness of family, friends and colleagues; not so much now, though they are still kind.

It is not your fault (as has been said by others) that you have lung cancer: you increased the risk, but we all do things that increase the risk of illness (being overweight, doing energetic sport, drinking too much, etc).

I too had a long wait for the results of various tests - almost unbearable and so difficult to understand when we are always hearing that early diagnosis is so important. I was told that, with all the new treatments that are now available, it is essential to wait for all the results before deciding on a course of action. I still think it a bit slow, but I don't think that the wait made any difference to my situation. Of course, there was the agony of uncertainty, but now that I have my full diagnosis, the uncertainty remains - no one can tell me how long I have left.

The results of my most recent scans were mixed. The really good news was that the chemo (cisplatin and pemetrexed) has caused the large secondary in my brain to shrink sufficiently for radiotherapy to be applied, and that will happen in the next fortnight. The bad news is that the primary in my lung has progressed considerably and there is a new secondary in the soft tissue between my right kidney and my liver on account of which I spent a night in hospital recently. Despite this, the consultant is still optimistic and has started me on immunotherapy, which he says has a good chance of be effective.

On final thought. One of my visitors, a priest, suggested that I write something about my life, especially as a child and young adult, to leave for my children. I have done that, though I add to it frequently when I remember things that happened to me or that I did. It helped me and maybe it will help them.

Keep us posted and good luck,

Very best wishes,

Stephen

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Dear Stephen1950

I don't know much about the treatment options or their names yet but I'm sure my learning curvev will be immense in the next few weeks.

I'm sorry to hear your mixed bag of results but glad your oncologist thinks there's a way around it - they are so very clever.

I liked what you said about the priest - it's a lovely idea. Where does one start?! I guess writing snippets as and when you remember them might be more interesting to the reader than writing a chronicled "diary" of one's life, and less of a chore to actually do.

How are you coping with the treatment?

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Dear Aamar,

Long silence - sorry - various adventures. Five days in hosp for a uretric stent (secondary tumour was preventing kidney from draining - v. painful condition - not recommended at all - but all sorted now) ; then a catheter (not one you are likely to need ...) plus rehydration etc. And here I am back at home, good as new (almost).

I started my life story woodenly at the beginning, but some ebb and flow creeps in. It might depend on how old your children are (I don't think you said). In my time, technology (not least, uretric stent insertion, I suspect) has advanced so much that almost any such details from the middle of the last century can't help being interesting, as well as friends, holidays, etc.

I've got a review on Monday with my oncologist. Presumably immunotherapy will continue (second cycle on wed) - no disasters yet, and too soon to tell if it is doing any good. And they are still talking about stereotactic radio surgery for the big brain met,though I wasn't well enough for it to go ahead as planned (the mask was constructed, Hannibal Lector style, but can still be used with new scans). So no one is writing me off yet!

Let us know how your results are on 27(?)th. I'm crossing all my fingers for you.

Best wishes,

Stephen

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Dear Aamar

There have been some wonderful responses for you and please no blame or shame, it has no place here, and you have enough to be dealing with. It is such a rollercoaster ride of emotions, which can come on unexpectedly and simple tasks and emotional reactions to things seem to take you by surprise. This is all very normal, however you do not have to suffer alone. The forum is a great and safe place to vent where many identify with what you are going through. Please feel free to speak to our Helpline nurse on 0800 358 7200 (Freephone number) Monday to Friday 9-5pm for anything you wish to chat about.

You could speak to your GP about how you are feeling and it is so important to talk or cry whatever comes, ask for support and help if you need it.

Thankfully there are better treatment options than there was some years ago and you can find some of them on our website: roycastle.org/how-we-help/l...

In regards to work, perhaps contact Macmillan support on 0808 808 0000, they have a specialist team who can provide you with work rights and benefits available. This link provides information on work right: macmillan.org.uk/informatio...

The wait is often the worst part, not knowing the full picture and what treatment options there are. You may wish to speak to the lung cancer specialist nurse about how you are feeling and if there is a possibility of your appointment being sooner, however the time of a few weeks may be needed to have the biopsy analysed, and this can vary between different Hospital labs.

If you wish to look at stopping smoking or feel the time is right, this link will direct you to all the varies ways you can be supported with this:

roycastle.org/how-we-help/s...

Kindest regards

The Roy Castle Support Team

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Thank you Admin, had a good look through the links. I've looked at them before and some info sunk in but much did not. I think it all depends on where you are in the journey.

As I said earlier, I'm in no rush for my appointments so at least that's not stressing me out. I understand why they take time and there's nothing I can do about it - I just need to apply the same logic to my other anxieties.

Thanks for all your support.

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As others have said most of us can empathize with some or all aspects of your post. Nobody deserves this horrible disease and you shouldn’t add embarrassment, blame and shame to the emotions you are feeling.

The uncertainty you have at present won’t be helping but once you know precisely what you are dealing with and the treatment plan I would hope you find it a little easier to cope. The wait for scan results is always stressful.

I find dealing with things one day at a time helps a little as then you don’t feel so overwhelmed.

I also think it would be a good idea to have your husband accompany you to the appointment with the oncologist. Both for moral support and so you have both heard what the oncologist has to say firsthand. Sometimes when you are feeling under strain it is hard to take in all you are being told so two pairs of ears can be helpful. If there is discussion re treatment options then he can be involved in this too. This should then lead to you being able to more easily talk to each other about the situation.

Hope you find the appointment with the oncologist on 25th July helpful and in the meantime please be kind to yourself, don’t push yourself too hard and find time to enjoy yourself with your family and friends.

Sending best wishes and positivity 🌻🌸🌼x

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Thanks Manninmaid - wise words. I hadn't thought about treatment "options". Is this where I have to make choices? I think that will be difficult but hopefully the choices (if offered) will be clear.

My husband will be coming with me so, like you say, 2 pairs of ears. I can't believe how much information I didn't absorb at my diagnoses appointment (although in my favour I can't be sure I was given much). Shock seems to stop my ability to process anything.

Thanks once again for your support. X

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Hello Amar. Your treatment options will depend mainly on the results of your biopsy I think. It may be that you carry a mutation for targeted therapy, have PDL1 expression making you a suitable candidate for immunotherapy, etc. I have had radiotherapy, chemo and immunotherapy. I didn’t have any of the mutations for targeted therapy. As my cancer has metastasized in my bones I also have denosumab injections to help protect them. I think your Oncologist will explain your treatment options and advise as to what he/she recommends and why. Hence I wouldn’t worry about the prospect of having to make a choice as I doubt it will be that difficult with a specialist’s recommendation.

So glad your husband is attending the appointment with you. I always bring a notebook with me too. Sometimes I have some questions noted down in advance. I don’t always make notes but it is good to have the option.

Sending you best wishes and positivity as well as a hug 🤗 🌸🌼x

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I really feel for you, i can see how you are feeling. Chin up though many people on here have survived years after chemo and treatment. Look on it positive and fight. Hope you see more clearly after seeing oncologist..x

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Thanks Jck. Feeling better since Sunday - I suppose it's normal to have up and down days but when down you feel it'll never end. One day at a time...x

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Hi, I’m sorry for how you are feeling, I’m 57 and I was diagnosed June of 2017 and had a right lobectomy well as involved lymph nodes and a year later spread to my brain 3 cm tumor removed and now a reoccurrence 2 can in my right lung area and I just completed 3 rounds of Taxol, strong chemo and I completed last round June 14 and I’m still in bed most of the time from dizziness and fatigue ughhhh but I fight with everything I got, and I quit puffing 2 weeks after using chantex I smoke a pack a day 30 years, please focus on quitting and I’m bald as hell and I love my wigs and I have so much fun with it, I’m vain and really had a hard tome with that hair loss now I welcome it, it’s hair and will grow back but I’ll miss my wigs, anyways please try to stop smoking and live and talk to your man and let me tell you that it’s a blessing you have loved ones that will support you but your honesty and commitment are needed so they can be there for you, I was scanned Friday to see if my lymph node is negative cancer and no doctor has called me yet lol so I’m assuming the Taxol kicked it’s butt!!! Good luck and remember you are alive and the people here are my ROCK!!

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My heart breaks for your dilemma - although I would like to know whether you have actually been told by a specialist that you do have the disease? Are these further scans to determine whether the disease is just in one area? There have been so many competent replies to someone with a confirmation but have felt you do not actually have a definitive answer yet - I may be wrong, it is just how I read through it. The reason I need the clarity is that my wife and I are going almost exactly the same thing, having had the CT biopsy on Tuesday and have been given an appointment date to see the specialist on Tuesday next.

We were actually discussing it this evening where we both found that we agreed we felt as if we were actually in a neutral zone where no one is truly scared because there is hope but at the same time absolutely terrified if we admit the possibility. So at this moment we have no battles to fight, just the one that says "Hang On" It is time that is so dangerous, especially those moments in time when completely alone with nothing to do. I totally understand the cleaning people discuss, but my thoughts (mans point of view) are that these are ways of keeping busy and not allowing thought to play a larger part than is wise. All I can say is if you are awaiting a definitive answer then don't think past the appointment date, it will do no good and serve no purpose as far as I can see. Remain positive and be assured of one thing - if I am anything to go by, your husband will be facing his fears just as I am but until I have to face up, I believe that whatever will be will be, but can we at least begin to worry when we actually know what we are up against?

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Dear ticking-ticker

It's such a horrible time for you both. I had a normal CT scan at the end of May and was told they had found lesions so further tests needed to be done. I then had a bronschopy and it's on the back of that I received the diagnoses verbally from the respiratory consultant. I was only told I had bilateral Adrenacarcinoma - it didn't mean much to me. I received a letter rhe folliwing Saturday, while I was alone in the house telling me that the cancer was T4N1M1a and incurable. I didn't know what this meant so had to do a bit of research and posted on here too. I called the specialist nurse on the Monday wih my remaining questions.

I had the CT biopsy that week - I assume this was to determine treatment - I'm not really sure - I clearly am not asking enough questions. Then came the CT on my abdomen and pelvis, presumably to see if it has spread - this type of cancer can affect the adrenal glands. As it happens I was diagnosed with Polymyalgia Rheumatica at the end of March which has associations with the adrenal glands so I'm thinking the cancer has brought this on - trying not to speculate as you suggest - it doesn't make a lot of difference what brought it on at this stage - the cancer is my bigger fish to fry anyway. It may however affect my treatment plan as I am on steroids for it.

Anyway, I haven't had the results of either the CT biopsy (28 June) or abdo scan - I assume I will be given the results at my first appointment with the oncologist on 25th of this month.

I suspect each health authority does things differently and the process may be both different and either longer or shorter for your wife. If she has been allocated a specialist nurse I'd advise you both to contact her with your questions. At the very least she/he will be able to explain the next steps and rough timelines of when they should happen.

I've just now re-read your post and see that you were due to see the specialist yesterday. I do so hope the news is not as bad as you feared although I'm sure it will still be a shock. I'd really appreciate to hear from you when you get your head around things, being that our cases are on similar timelines. It would be even better to hear that It is not cancer at all but I suspect being this far along in the process means that possibility is no longer there.

Take care

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