Hi Marj, I'm so sorry for all you are going through! It is so kind of you to take the time to help others when you have so much going on in your own life. My mum also has metastatic  cancer but at the minute she is "stable" and is scanned every 3 months. 

I cant stand snoring either haha! Isnt it the worst! My partner snores too, I always shake him and get him to turn over so he stops for a bit and I can get back to sleep lol! 

Im sorry your husband still suffers fevers and has had no answers. Can I ask how high his temp goes or is it only low grade fevers? Mine are low grade it happens mainly at night time. I dont think they would give me a PET scan, I also dont work at present so couldnt afford to pay for one. I will have to see what hemotology say, I'm just really hoping this goes away in the meantime amd that it is just some kind of virus! 

First let me apologise for not getting back sooner, however I was and still am very unwell. My husbands temperature only goes up one degree. His normal temp is 37.5 where as mine is 36.5 so his goes to either 38 or 38.5 that’s it no higher. I am sorry to hear about your mum darling. Where as your mum got cancer is it breast. I don’t know why nearly everyone assumes it’s breast cancer with women. Now regarding you having a pet scan I would agree about cost even if you had that sort of money. However if they think you may have some form of cancer it’s actually worth asking about one. It’s rare they just give them as a matter of course due to cost. I just happen to live in a area my oncologist will and does order them in many cases. Now I do not know why he does however he does. Has I said I have had 2. My philosophy is if they thought theirs a possibility of cancer then surely just do a PET SCAN by doing that it can safe money by not having to have content tests. Eventually I do think long term it would even out with costs. It really annoys me. Because it does seem to matter where you live, it’s down to the postcode lottery again. Where I live I am eligible to attend 3 counties for treatment and A&E now it’s the truth I border the 3 counties hence eligiblebilty I live in Leicestershire bordering on Nottinghamshire & Derbyshire. I can not name the hospital I do attend or my oncologists name, it’s not allowed. I do understand why though.. I have a brilliant oncologist and would be proud to let everyone know who he was. But then again I suppose it’s better for him in the long tun

anyhow I will leave you for now, sorry I seem rushed it’s justvwith not feeling well that’s all. If there’s anything else you wish to ask me please feel free. Also do let me know how you are coping and your mum. I might be a little slow at the moment to get back to you, so please bare with me 

love Marj xxxx

Hi Marj, I am so sorry you are unwell. It is more than kind of you to spend time in this group helping others when you are so unwell yourself. Please spend time looking after yourself and dont worry about replying to me! Yes my mum has breast cancer, its inflammatory breast cancer. She got scan results today and everything is still stable so she will be scanned again in 3 months. 

I'm not doing too bad right now. My temp is normal for most of the day now, around 37. Some evenings it goes up to 37.6 then back to normal. Last night it went up in the middle of the night and I found it hard to sleep. Apart from that things are ok and I'm not as anxious about it

Hi, first of all don’t worry about me. Sorry it’s taken me a few days to get back to you. I only realised tonight I don’t know your name. I wrote after I had read some of your messages with music lover. It’s when I first wrote and told you about my husband having had suffered with low grade temperatures. Anyhow I am sorry to hear it is breast cancer with your mum. Although it’s good to know she’s still stable, and hopefully it will stay that way for a very very long time. I was also pleased to hear you had been feeling a little better. I can not imagine how you felt not being able to sleep when your temperature went up in the night. I know some people say I understand because of.......... That to me is one of the most annoying statements I hear. Under normal circumstances I used to have insomnia but in truth until I became ill I never seemed to need a lot of sleep. I also no one has any idea how other people are feeling until they are actually in that situation themselves. I know after my first husband was killed in the car accident. I just remember some saying I know how you are feeling because I lost my sister in law in a car accident. I didn’t say anything only because I know I can go a bit over the top. So I thought it was best to keep quiet. When I say go over the top, what I mean by that is sometimes I can say things before my brain gets into gear. I might say something hurtful so that’s why I decided to stay quite. I know I was thinking actually there’s no comparison to losing a sister in law to a husband. Because they love we have for people are in different scales and different types. Someone said to lose a spouse is the biggest loss you could suffer. Now although I was only 29 he was 32 when he died. I thought my whole world had come to a end. Yet even though I was feeling totally devastated and my life had almost ended, I turned round to the person who had said it. I said no not the biggest loss, if it had have been one of my children then I wouldn’t be thinking my life was almost over. I would be saying my life is over. I think that’s the biggest loss anyone could go through. So although I could say I understand how you felt I don’t know I and others never will. Even though I had insomnia. It’s still diffident to what your going through. That’s if you understand what I am trying to say. I can waffle for England when I am feeling a little bit better. Anyhow I am just going to leave you tonight with this. First ask for a PET SCAN.

secondly this is for your mum. I was given a prognosis of 6/8 months back in 2013 yet I am still here. No one knows why but I am. Tell her to keep her chin up and I hope she continues to stay strong and stable. Ok 

love marj xx

Hi Marj58,

I am fascinated and heartened by reading your story about defying the odds........long may it continue!

I’m wondering what your initial symptoms were and how long before you were finally diagnosed?

My concern revolves around a chronic cough I’ve had for nearly two months coupled with a stiff neck and mild back pain........and chronic tinnitus since the end of April. I should get chest CT results some time next week, the X-ray a month ago showed some inflammation and atelectasis in the lower left lobe.

Sorry about the thread hijack by the way!

Dave

Hi Dave, no problem you didn’t hijack at all. My post is for anyone who wants to chat, ask question whatever they need to chat about. I didn’t actually have any symptoms or so I thought at the time. However looking back I know see that there were a few. Yet none led me to even think cancer. I was visiting a friend in Coventry at the time. She had mowed her lawn whilst I strimmed. Something flew into my mouth. We all have something called gag instincts. Where anything in the back of your throat makes you cough. I stated coughing, I coughed so much I brought some blood up. I was not concerned I just assumed I had nicked the back of my throat. I continued to cough up blood for almost 3 months. Now I paid another visit to my friend in Coventry. This night she needed to see a doctor, we visited the walk in center whilst I was there this coughing up blood I decided to see a doctor to the possibility of having a few stitches. Cutting a extremely long story short I ended up at hospital. The feast of the story is so long, and what happened that night was so bizarre I thought I had landed on Mars it somewhere. I will not tell you tonight. If anything I would prefer privet message. Only because something on this public forum you can’t say. So do not be surprised if the hospital name is removed. Eventually when I got home I visited my own GP for stitches. I know some people would think why did I not see someone before 3 months. I just used logic every time I coughed I kept opening up the cut. That’s the logical reason. When I went to my GP I was asked a lot of questions. He told me he was making me a fast track appointment at the lung clinic. At that time I thought it was a bit ridiculous to be fair I was still sure I had cut the back of my throat. Everything was done so quickly it wasn’t long before they told me I had lung cancer. I know this will seem strange to some people. I just said never mind s...t happens. I am sure they thought I was in denial but actually I wasn’t it’s just my way. I was asked to spend time with Macmillan. I said I was going after 10 mins I need to go shopping l. I really did get some strange looks. What I actually did was go get a coffee. I sat down and then I did my thinking. I looked back for anything obvious that might have been a indication. It was only then I perhaps had a few tell tail signs. On and off for over a year I woke up feeling a little unwell, as if I was running a temperature. Feeling shivery yet at no time did I have a temperature. Truthful I am definitely not trying to scare you. I did have on and off some pain in my neck which I put down to sleeping funny. It get coming and going. So I took a pillow away, no it kept happening is if I had cricked my neck. I had already had a couple of minor chest infections. That soon cleared up with antibiotics. The actual week leading up to me seeing a doctor, in fact it may have been a couple of weeks. I just kept getting up feeling a bit tired than normal. No one knew why for just over a year I was getting up feeling like I was running a temperature and slightly unwell. My bloods did show a increase of the white blood cells. As I am sure you know when they go up it’s a sign your fighting a infection of some type. Drs put it down to a virus. So a few weeks as I was saying prior to diagnosis I just assumed here we go again. Went shopping with my friend Zoe. Who I just happened to say a couple of days prior to going to the walk in centre. That this time this virus is taking its timr to go. It was the day after I had this bizarre experience in Coventry. For the first time ever I took myself to bed in the afternoon for a couple of hours. The cough I had. I thought was going to turn into a chest infection but it didn’t, just remained a cough. I also had lower back pain. That I had no concerns about. Years prior I had slipped and put a couple of discs out. They wanted me to stay in hospital for 10 weeks in traction. Which was a joke. With 3 young children and my husband at work I said no a chance. They said I would suffer on and off for the rest of my life.being honest I very rarely had problems with my back, in the 22 years I had put the dics out. I just remember the odd time where I perhaps turned wrong. Or lifted something really heavy without bending the knees. So again being at my friends her mattress on the spare bed wasn’t as firm as I was used too. So every little warning signs that where there. I had something to say it’s because of  so and so. That is if they actually where warning signs. I now actually believe a couple where. Like feeling I had a virus that didn’t really want to go, plus each time I had that feeling of a virus. It just seemed each time we’re taking longer to go. The neck pain. By removing pillows didn’t seem to ease it any. The cough that didn’t develop into a chest infection. When you put them altogether I still honest to god never considered cancer. Not once. Apart from the white blood cells bring high on a few occasions. Nothing absolutely none of them made me feel it was anything at all serious. You know what not even coughing up blood. I am not a unintelligent person. Yet logically what I said with a cough and bringing blood up, because it coincided with something hard flying into the back of the throat it would take its time to heal. Especially coughing would keep opening any healing that was happening. As it transpired what the coughing had done. When whatever I had flat into my throat I coughed so much I had burst a tumour in my lungs. I had a bigger one also with a couple of smaller ones. Now why I wasn’t coming up more blood than I was I do not know. Even my xrays saw something but the lung spealist didn’t think it was serious. I found out a couple of weeks later his main reason for sending me for a CT scan. Back in the May 5 months previously. One of my younger brothers came back if holiday and the day he came back. He ended up the the heart until at the same hospital. His organs was starting to close down. He had so much water around his heart, it was only quick thinking of the doctor on the heart unit even though my brother was awake the put drains in him without anything to help the pain they didn’t have time. They where draining of the fluid, then they put another drain into his lung his left lung was also filled with water again while my brother was awake. On further investigation as to why and what was going off. The doctor who sent me for a CT scan he diagnosed my bother with terminal cancer in 24 hours of going into hospital with everything closing down. That came as such a massive shock because no history of cancer ever been heard of in either side of the family. It was only when he asked me if their was any history of cancer. I told him what had happened that night back in May. It literally was pure luck I just mentioned it was at the heart unit at the very same hospital I was at. He asked me his name. Yes even with my brother having been diagnosed with cancer back in May it still never crossed my mind not at all. It transpired him that sent me for a CT was the same lung doctor that had to tell my brother he was terminal. I didn’t see him again when I got called in early to discuss my CT results. I saw a different doctor. It was her that told me I had cancer. Just needed a biops and PET scan to be 100% sure. Although she was 98% certain. Anyhow Dave I am keeping my fingers crossed for you. Now you do not have to accept it but I am going to send you a friend request. I am doing that because I want you to keep me informed of your results. Also if you need anything to say. Which you will need someone to talk too. At least you can swear steam whatever in a private message. Being truthful. With so much getting taken out of a public forum. Like names of hospitals, names of consultants, many other thing. Even things you want to say and do not mind telling one person but not the entire forum it’s all then done by private messages. I will be honest. I will not name names but a couple of us are sending private messages now. Ok. It’s up to you. All I will say is I am always here if you want to chat. Sometimes you may have to wait a couple of days if I am not feeling good though. Ok I can’t say more than that. Good luck and I am thinking of you. Please do let me know the results of your CT etc lots of love and best wishes 

 Marj xx

Hi dave, how are you? Are you still getting raised temps? Have you had your ct scan yet? 

Marj, you really have been through so much. I hope you get through this rough patch and start to feel better soon. I will pray for you! 

My anxiety is quite bad today. I found a lump in my neck last night. It is quite hard and I cant tell how big it is as it goes deep into my neck. This has heightened my anxiety so much and deepened my fears that I have something serious wrong :( 

About the fevers, my friend was telling me to use an oral thermometer as an ear one isnt as reliable. Especially when I'm taking my temp in the middle of the night and lying on my ear. So last night I woke up hot and sweaty. The ear thermometer said my temp was 37.5. But the oral one said it was perfect at 37! So maybe I'm not throwing as many fevers as I think I am. Im gunna keep checking on the oral one now...

Hi Smoore921,

The usual pattern (groundhog day) continues unabated:

I awake in the morning with a back ache and stiff neck but breathing normally with slight rales on inhaling.

Get up and begin to cough when I shower.

Cough is mostly dry, but when I clear my throat it isn’t.

Cough subsides in the morning but returns around lunchtime and worsens until I lie down or slouch on the bed in the evening.

Daytime temperature feels raised (face and neck), but back pain eases.

Sweat a bit at night too, but not the past semi-drenching sweats when I wake up (which I had in April).

.......and repeat.

The CT scan was slick and the radiologist was very professional and informative. She said it’ll be 7 days or more before I’m contacted about an appointment to discuss the results.

There is something wrong with my lungs, but I am clinging on to the fact that there were no shadows or pleural effusion on my x-ray a month ago, I am not coughing blood and I have ‘form’ in that I have bronchiectasis, post nasal drip and a hiatus hernia. So the problem might not be immediately life threatening. I say ‘immediately’ as bronchiectasis can become serious if not managed and the silent reflux could cause lung or esophagus cancer in later life if not managed.

If your sweats aren’t drenching, you may just be fighting a virus. Lymphoma night sweats are supposedly quite distinctive.

Try to relax (says the bloke dreading scan results).

Cheers,

Dave

Hi Dave, sorry for the late reply but I try not to come on here as often as it makes me more anxious! Im still waiting to see hematology and still getting low grade fevers in my sleep. Just trying to get on with it as I wait to see a specialist!

Have you received your CT results yet? I hope you have got good news!