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LUPUS UK
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Cancer

Hi everyone I know haven’t posted for a while but I just need to talk to someone. My lovely husband of 33 years was diagnosed with lung cancer yesterday. I half expected it but when they tell you, it is still like being hit by a train. The whole process only took a week. Had chest x Ray on Monday, bloods Tuesday, scan Thursday and clic Friday. Have to say NHS have been brilliant. He has to have bronchoscopy on Wednesday. Terrified they will find asbestos (mesothelioma). He’s a builder of the old school before health and safety recognised how being exposed to asbestos could come back years later and kick you up the backside.

I was a nurse and my daughter is a staff nurse at our hospital Macmillan unit. I am dreading the thought of him having to go in there.

I have gone into nurse mode but I am worried about coping with lupus etc. My go trying to get me off Tramadol and on to Gabapentin, I am really struggling had it for three weeks and only been able to take 2 a day. They make me feel spaced out and nauseas. Have felt small benefit but I have to be there for my husband and won’t be able to. Sorry for the long post just needed to “ say it out loud “ xx

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Sending you MUCH LOVE josie...am v glad you’ve returned now: we’re totally here for you, my dear...am having to rethink my 2-3rd level pain meds too right now so haven’t much to offer and will be following your replies as they come in. Am sure there will be vvvv good replies. For now, please just know am right by your side...and relieved the system is stepping up properly for your dear husband & family: you’re highly experienced and know how crucial this is....you know the drill: take things 1 step @ a time.....and please let us know how you’re all getting on: your post is FAR from long...please give us as much as you can, whenever you can

XOXOXO Coco

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Will do. Thank you so much for your reply xx

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XOXOXOXO

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Xxx Coco

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😍🍀💐

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I’m sooo proud of you for all of the help you give to others.

Wow you really are great at all the details sweetie.

You’re in my thoughts and prayers.

Love you Coco

😊🌸🌿🦋🌿🤗♥️🥰

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Your ❤️ is HUGE and we all benefit from your being here EJ 💐💐💐💐

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Awww Coco that’s so kind of you. I really don’t feel very useful like you because I was diagnosed so long ago and that format is outdated. You and so many others can give such detailed data and I can’t do that.

I do try and be supportive and send love to everyone. Sometimes it doesn’t seem enough.

Anyway I hope you are doing fairly well. You’ve got so much going on you’re a true inspiration to me and many others here I’m sure of this.

Lots of Squidgies dear Coco.

🥰🤗♥️🙏

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Awww bless your heart. I’m sooo sorry about your hubby’s DX. As a nurse you already know so much and can fully understand the routines and all the steps in them. No wonder you’re scared.

I lost my mom to lung cancer 20 Years ago yesterday. She was a chain smoker for 52 years. My brother is worse than she was and diagnosed last year went through radiation and still smoking some.

My mother’s situation was compounded by anorexia from smoking so much. She basically lived on cheese stuffed mini pretzels coffee and coconut candy bars. Being malnourished caused complications.

With you having Lupus the stress of this will negatively affect you.

I am taking Gabapentin 1200mg b i d. At first it made me sleepy. Took a month to adjust. I took crackers with mine to prevent GI issues.

I’m sooo sorry you’re having such a time with the lower dosage.

I just prayed for you both dear. It’s okay to get things off your mind anytime.

I’m across the pond in the USA 🇺🇸. I’m willing to listen and be here for you if you wish to talk again.

I wish you both the best outcome and a cure.

Take care Josie.

😊🌸🌿🦋🙏🤗💗😘

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I am so sorry to hear this and I can completely understand you going into nurse mode. Your daughter will be doing the same. I think you should go to your GP and say everything to them that you have written in your post. You are going to need support and the extra stress on your body will affect your Lupus if you don't get the help that you need.

We are all here for you so keep posting x

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Thinking of you and all that you are going through. , Lou xx

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I’m so sorry. Sending you much love. Remember you can always find a shoulder to lean on here, even if we can’t help in practical ways x

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Thank you so much xx

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So sorry to hear this news. After her big op last year, my Mum has just discovered that she has lung metastases, so I can relate. Please don't apologise for posting here; as you say, sometimes it's just too hard to hold everything in. Will be thinking of you x

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Thank you so much xx

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Thank you so much. I’m sorry to hear about your mum. You can always talk to me if you can’t share your feelings to your family. My dad died of lung cancer 10 years ago last week, my husband and he have the same specialist nurse. Sending hugs to you xx

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Thank you. That must add another dimension to this, not an easy one x

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Oh Josieswolf, that is such bad news for you and you family. Say it out loud anytime you like, we are listening. Thoughts and prayers to give you strength for the ongoing journey xx

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Thank you so much. Xx

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I have never spoken with you before. I am not a religious person but really feel for you situation and am sending as many good vibes as I can muster.

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I am so sorry - I know exactly how you feel, I was there 26 years ago when my 41-year-old husband developed a teratoma involving his lungs and we had no idea what would transpire. He survived and is still going strong (-ish) so lets hope this turns out the same way. My cottonwool brain took ages to dissolve. Hopefully your GP will allow you to stay on what has suited you - there are more important things at present.

All I can say is loads of virtual hugs coming your way, I wish I were closer to do something useful and if you want to scream at someone who trod a similar path - message me anytime.

xxxxx

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Thank you for sharing your experience with me. Xx

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Hi Josieswolf,

My heart goes out to you & your husband & family. I did some work on an intensive care thoracic ward in Canada a couple of decades ago & if the cancer is contained in lung lobes or only on one side they can & do remove the whole lung if necessary so I hope your husbands cancer is like that where he can be successfully treated. Back then they used to get them out of bed within 24 hours of having a whole lung removed & I know that they would have progressed further since then. I know that at that time in Australia we were not nearly as advanced in treating our lung cancer patients.

Prayers and thoughts are with you & your husband & I hope he has a lung cancer that it is a primary cancer and can be successfully treated. A huge huge strain on you both as well as your family.

Love & prayers for success

Melbourne-Girl xxxx

🍀🍀🍀🍀🍀🍀

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Thank you so much. I will bear everything you said in mind xx

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Still thinking of you josieswolf & love & prayers to your husband that he gets the best outcome possible. I understand totally your concerns about possible Mesothelioma & if mine & everyones love & support going your way helps at all it will be an easier cancer to treat. Let us know how you are progressing.

I know we all are hoping that your Lupus is not adversely affected too much as you have all of this worry & distress as well,

take care Josie,

Love & caring always

Suzee xxxxx

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

I hope the 4 leaf shamrocks bring both incredible luck & love as you both face this distressing time together.

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Hello Josieswolf. I am so sorry. Having read this post I would like to wish both you and your dear husband the very, very best. Try and keep your chin up. it is hard I know, just know, you have a lot of friends on this site.

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So sorry to hear this. I wonder if you speak to your GP regarding recent events if he/she may feel that now is not the right time to swop your med over? In relation to your husband just remember that in many cases cancer is now very treatable but of course we always fear the worst when we hear this words and especially as you have some clinical knowledge. I also has cancer 7 years ago and am a health care professional but found it helpful to look at guidelines etc so that I felt more in control and so that I could write down and check the treating team were doing what they should. It made me feel more in control and helped me understand what was happening at each stage and why. Perhaps that is a way u can support your husband but remember in this situation u and your daughter are wife and daughter and not his nurses and you will also need your own support. My thoughts r with you and your family xx

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Thank you, I do think being in nurse mode is the only way I am going to get through this. I’ll be strong as long as I have to then when it is over I will crumple. If my lupus will let me of course. I think prednisolone and I will be great friends in the future. Xx

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Sending hugs xx

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Hi Josieswolf

Having just read your post I would like to wish u all well..it sounds as if they are acting very quickly to give your husband the best treatment possible. I think it's important that u have an outlet for yourself in order to get support so please post when u can and we will help..a good rant works wonders I find! As far as your meds are concerned it's probably bad timing to try and change them..maybe u could stay on the same until things are more settled?

My thoughts are with u and your family at this difficult time..be strong as u can xx

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Thank you xx

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Oh my goodness I’m so sorry for what u are all going thru right now and sending lots of love to u all x

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Thank you xx

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So very sorry you and your Husband have to go through this. Prayers and 💘 love being sent to you both. Hang in there and know you can always post here and get people who care to listen.

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Thank you all the support I have had from everyone is so comforting xx

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I took one tablet of Gabapentin and one Tramadol and felt very sick I only take Panadol Advance and bear the pain as I have other health issues.

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I know its horrible, going to see my GP this week. I can’t be spaced out, I will need to drive. I also take paracetamol with one Gabapentin and try to reduce the amount of tramadol I take. Good luck to you I hope it gets better for you. Xx

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Dear Josiewolf

My heart goes out to you in these difficult times. I hope you get all the practical support to see you and your family through. This forum is a god send when you need to pour your heart out and as usual people have been readily offering their virtual support. We all need to scream our pain out sometime and this is a perfect vehicle for it. Keep strong and we are all spiritually and virtually with you. Keep us posted and hope the treatment is well received by your husband. Loads of hugs. Chantev

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Thank you xx

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