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FormerMember over 16 years ago

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Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

FormerMember over 15 years ago

Hi Billsgirl

Just read your post, and wanted to say how sorry i was that your family is going through such a tough time.
Welcome to share, sorry you had to find it but now you have please dont apologise for writing your thoughts and frustrations, thats what it is for, we all understand. Keep posting it has become a real god send for me, being able to express things i couldnt possibily be able to say to my family or friends.

Sorry i couldnt be any help just wanted to reply to let you know theres someone listening.

Rachel

FormerMember over 15 years ago

hi everyone. I have just joined the forum and am rather nervous. It is a little confusing!!!!!! But I am hoping it will help me to gain info for my dad who has metatistic kidney cancer. It has spread to his lungs and lymph nodes in the chest and next week it willl be a year sonce he has had this hrrible illness. However, not all doom and gloo he is carrying on with life as normal and is back working full tim I just pray that he continues to for a long time. Be good to speak to anyone going through the same thing!!!

FormerMember over 15 years ago

hey there , this is the first time i have EVER used a forum but i just had to let you all know the hope and optimism your posts have given me. i am new to cancer as well - my mum has just been diagnosed with non small cell lung cancer. she is 58 she first went into a&e with chest pains a couple of weeks ago, and since had a broncoscopy and ct scan. ncsl was diagnosed last friday. we are waiiting for her to go for a pet scan next week, the results ahould be ready 2 days later and this should confirm how far it has spread - they have told her its spread to her lymph nodes. after reading up on the net about nscl cancer i was in shock at how dismal and frightening the information was, my mum also was being completely realistic - "its just one of those things.... she smokes its her own fault - and still smoking as the doctor told her if she enjoyed it no point in stopping..don't be too optimistic...she was sorry for us - me my sister my brother and my dad." - its just DEVASTATING. only word ive got for it. we know we got to be strong for her and we are, i cant seem to do it when im on my own though and i so scared of whats to come. i just think if im feeling like this how the hell must she be feeling?? i dont know if shes putting on a brave face or just being strong for us but she seems to be taking it really well, is at home and just seems to be getting tired quite often but shes still getting about. she said she has been coughing up blood and just had some shoulder and chest pain. she issuch a strong person, amazing mum and always put everyone else first though and this makes me worry that she is hiding how she really feels to protect us although her attitude has always been that you just get on with things.
reading all the different posts has been really helpful, this waiting time is awful, apparantly next week we should have some information about what stage its at and treatment she can have, your posts have really given me strength toget through this horrible time of waiting. i hate the helpless feeling and would really appreciate any advice on being there for her without smothering her, or just generally how to help her

thank you xx

FormerMember over 15 years ago

rachy1- I've just read you post & you have summed this up for me regarding my younger sister. Her cancer is back in the lymph / neck & is now coming up to her 4th chemo. When the diagnosis was confirmed (my sister knew in her mind it was back) I was devastated, but refused to accept this would be the end. My sister was in a black hole till this was confirmed then it seemed to be some sort of resignation and let's get on with treatment as she needs to be there for her little boy of 8. Now I am struggling with coping at the moment & have got to buy some waterproof mascara ! My sister doesn't part with a lot of information & to be quite frank does take me / mother & others for granted (always has done) & does not show a great deal of emotion to us. I didn't really deal with this as well as I should the 1st time as her little boy was a baby & time just went getting ourselves organised etc (sounds paltry I know) so I intended to do better this time. However, how can I if she doesn't talk to me - I did say before chemo started that she must tell me what she wants & how she feels as I can't second guess her all the time. I know exactly what you mean about smothering etc & I maybe go overboard, but my sister is so casual (& stubborn) especially as she is on Taxotere - nearly lost her with Netropenia after the first dose. Some say lead as normal life as possible & others say take extreme care. To be honest she is centering everything on her lad so he doesn't want for anything & this does annoy me as he basically won't do anything to help & is just turning into a mummy's boy. Big row @ the weekend with my husband who says I'm just taken for granted & mother is wearing herself out doing too much. Where are the friends when it comes to hard physical labour ? We live on a smallholding so there is plenty to do. I'm rambling I know - I'll gather my thoughts and return - just neede to write something as when I read this I'll probably think how stupid am I. It makes sense when I talk in my head walking with the dog for our quiet time.

FormerMember over 15 years ago

hi jewels, you must have all been through so much, your not rambling atall. thank you for your reply it must be so difficult them (eg my mum & your sister) they have themselves to deal with aswell as everybody around them. your little nephew must be frightend too, im dreading the kids in our family finding out and seeing my mum go though whatever may be round the corner. i am beginning to understand how hard it must be for you too ive been in bits since we found out only managing to brave it when im with my mum, but this website really has helped and you must talk about what your going through aswell. i know what you mean when you say where are friends, but to be honest id rather not talk about it to mine as there is nothing they can say or do - this my fiancee is finding hard to deal with because he simply cannot help and i am so angry & fustrated with evrything. im just trying to focus on waiting for her first app with the oncologist now.

can i ask you something? will my mum needs to be hospitalized for the treatments or will she stay at home? i have so many questions about everything, i wish she would let me go with her. what are Netropenia & taxotere?

FormerMember over 15 years ago

Hi there,
I'm new to this and am looking for either some advice or reassurance or maybe just to be able to talk to other people who have gone through or are going through the same experience.
I was diagnosed with lung cancer at christmas - a mass in the lung! I had the mass and the lower lobe of the lung removed in March and then went on to have 4 sessions of chemo. I've now finished chemo (July 7th) and am waiting to see the oncologist on Friday for the 6 week check up. I think I was expecting to feel so much better when the chemo was finished but instead I feel ill all the time. I'm tired all the time and can't seem to do anything without almost collapsing. I've been in hospital twice since the last session, firstly because my blood count was so low I had to have a blood transfusion and the second time because they suspected a blood clot in the other lung but the scan was clear. Also this week I've had a biopsy done on a small growth on my chest which the doctor said was skin cancer- "but don't worry we can remove it!!!!" That came as a bit of a shock!
I think what I would like to know is whether how I'm feeling is normal at this stage and can I expect to start to feel better sometime soon.
I just feel useless and want to do so much but physically can't.

FormerMember over 15 years ago

Rachy - Just don't try to do too much yourself. Always ask if you need help - if you get turned down then it's sad, but pepople often will as they are glad to be of assistance (they just often don't know what to do for best). I'm no expert, but I have been researching each time I find out something form the Oncologist etc - how on earth do you ask the ??'s if you don't know what to ask in the 1st place.
I can only relate to what my sister is going through so bear this in mind.

Anyway - Taxotere is chemo. for non HER2 type cancer (know as docetaxel). Sister goes in once every 3 weeks for this (bloods done regularly as well). Side effects vary, but so far she has been tired etc on the weekend after treatment & we try to keep contact to a minimum as the risk of catching infections is higher after the chemo. Netropenia is a form of sepsis when the neutrophils / white blood cells are low so this leaves you open to infections. After her 1st chemo she did have an infection, but we didn't realise she should have gone in for blood tests immediately she had a sore throat - not waiting for her temp to go up to 38'c. With swine flu about is was a bit scary. She is not hospitalised and lives at home whilst undergoing treatment. After this she needs radiotherapy & then ovaries removing. This is her last chance of setting this cancer back & that's why I'm scared as I am now dwelling on what the Specialist said - it was a blur at the time.
Go with your mum & be an extra pair of ears. It helped me as I need to know what's going on & what to do etc as i can't rely on sister dear telling me everything- I didn't the 1st time with my sister (she's so stubborn she kept it to herself) & I'll always regret this.
It's time consuming & can take some re-organising of your life, but hey I'm losing weight !
Tell your mum you need to know - she's looked after you and now you want to do the same for her.
Keep in touch - if you wish to talk private then no problem.

FormerMember over 15 years ago

Hi Jewels, Rachy and Guitar Man,

Sorry to hear everything that you're going through either as a sufferer (I hate that word but have spent 20 mins trying to think of an alternative! Please enlighten!) or as a family member.

You might not find all the enswers you are looking for but what I have found when it feels like no-one understands how you feel - is that this is the perfect place to find people who know exactly how you feel!

My Dad has recently been diagnosed and is on a 'watch-and-wait' to see when or if he needs treatment, but trying as ever to hold it together as a family so I know exactly how awful waiting for the unknown is - too much time for you to make up all sorts of concerns in your head and no-one totell them too because you don't want to upset anyone close. Well here is where eveyone and their dog (if they had digits to type!) can rant and get it all out. I've only been posting a few days and already feel a massive weight off my shoulders.

The kindness of strangers - that's what's here!

GM - I hope you feel much better soon, I can't offer any advice on this but sending out big hugs to you and yours. I know it must be so frustrating - but take it that feeling this crappy means hte treatment is working (I heard this from a friend with the same thing) and it is only a bend before you hit the straight and narrow of feeling better. :)

Jewels - I know it must be hard on all of you - but am I so amazed at how brave you are - you have some pretty amazing women in your family! It's nice to come in here and ramble - I find it helps me deal with 3D people later on in the day! Sending out hugs to you too! X

Rachy - My Dad is exactly the same - stong willed, stubborn and has the attitude that this has happened now lets get on with it! He never talks about it and that suits him, people are all different - infuriating - but different! As the eldest in our family I know all about having to be strong - but it's not easy and talking (or typing!) about it really does help. Please don't get burdened down with wanting to be strong - what your Mum needs is for you to be well enough to support her, so look after yourself - plenty of vitamins! Love tou you and your family! X

FormerMember over 15 years ago

Rachy1 - You know I've just thought of something from when sister was 1st diagnosed. It may be a bit stupid to you, but you are 'lucky' in a way your mum is dealing with this in her own realistic way. My Mother had my sister written off from day 1 & that was an awful time to go through. Oh hell i'm off again - think it's my month for crying now.
I'll be back, but it is certainly good to talk on here - nearly everybody I talk to in 3D is so casual & I'm not sure if they want to care unless they are directly involved (does that make sense ?). I missed some of the in-laws birthdays cards through trying to do too much - I will apologise soon, but feel like saying 'hey, I've got more important things to think of at the moment so just give me a break & make some allowances'.
Oh well it will be a chat with the dog & my sisters chickens later tonite & we will put the world to rights.

FormerMember over 15 years ago

It shocks me how many people are affected by this horrible disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I just wish it could all go away!!!!!!!!!!!!1

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