Post 1 posted on 25 January 2008 at 07:52:21

I will open up today

Hi, I am writing this post today I guess for my benefit as well as anyone who may read it as I have stayed away from the forum for a few weeks due to my over emotional feelings about things but reading the posts over the last few days have made me see that this forum helps so many people. When I was going through tests and diagnosis I used to read the Teenager with Cancer posts started by Zoe and the posts used to make me laugh and cry and gave me such hope but deep down I hoped that I would never need to post on here. When I was finally diagnosed with NHL Stage 4 and incurable but treatable I started posting and responding during chat. I then had a few friend requests from carers whom partners had same as myself or similar and who had undergone treatment but it hadn’t worked and their carers seemed desperate and I was very angry that they had been so insensitive to request me as a friend knowing that they had detailed profiles about very negative results to do with treatment and that night I cried and cried and felt terrified. I also used to read some of the carers comments about their loved ones and would feel dreadful thinking I hope no one ever posts about me like that as I would hate to be talked about as if I was a victim etc. hope I am making sense, sorry if I am not. What I am trying to say so inarticulately is that I felt angry about some of the posts (don’t now I must add). I have now come to terms with my own Cancer and my feelings and don’t beat myself up about not agreeing with things etc and I am a very deep and caring person who I guess was feeling like hey never mind how you are affected by another person’s cancer think about the person who has cancer how do you think they feel! but then I realised how difficult it must be to watch your loved one going through all this as I am sure my loved ones find it. I am only not quite half way through my aggressive treatment and already I have had dark days where I have cried myself to sleep in so much pain from side effects and had paranoid irrational thoughts that my partner needs to leave me or that he may get a shoulder to cry on from a pretty girl and leave me etc etc, I get angry I get sad then last week on a good day I sat with my mom glammed up to the nines with my poshest wig on and had uplifting music and said to her with tears of happiness that I actually felt the most content I had ever felt in my life and cancer had really opened my eyes to what really matters in this world. Then this Wednesday I went downhill and whilst I sobbed in pain I turned to my fiancé and said I want to stop treatment and if it wasn’t for him and the children I was not really up to fighting for my life as I was so tired of feeling ill.

I looked in the mirror yesterday then feeling a bit better physically and saw that my ears seemed to stick out more and asked if someone had held them in that position during the night ha ha my head is shiny and bald and I look so different but my family around me say I still look like me to them. My son said mom I see your face and that is still beautiful so to me you are exactly the same (he is 14) my partner calls me peanut head and my daughter and my mom say I look like an adorable baby. I am 37 years old for goodness sake!

I do not fear death which I promise is the truth as I am not scared of dying all I fear is missing people so much it makes my heart ache, missing my children getting married missing my cuddles with my partner, missing watching TV or playing board games and laughing til I cry. Now I am crying just reading that. This post is not making any sense at all, chemo has made my brain fuzzy I guess. Well I could write and write and make less sense with each sentence but I had to do this to let some of my head work out. I think everyone on here is inspirational and so many people take the time to reply to so many posts and I want to be part of this too when I can. That’s not to say I want to live my life in front of a computer but with all this time off thanks to Cancer I have plenty of free time right now,. I am staying positive but I know I will stay get down but I will just wait for it to pass as nothing can stay the same and then smile and get on with this journey. I do feel that cancer has opened my eyes and my life is perfect but with cancer, I have faith and hope though in this world and I have faith and hope within my heart and that will guide me through this challenge in life and hopefully make me stronger and better. Love to all, Sarah xxxxxxxxxxx

Post 1 posted on 25 February 2008 at 09:43:53

Mark, so sorry to hear about your dad. I cannot tell you how to act/re-act to your father as only he will know how he feels but I have said over and over to my family, please treat me “normal” I have not changed I am still me and even if this disease changes me where perhaps I don’t act like me or look like me for periods of time etc remember never to lose focus on the person you know and love, what I am trying to say is sometimes you have to put on your rose coloured specs and look past the cancer and just into the eyes of your loved one. Normality is so important to me but obviously there are days where I take full advantage of being the patient GET ME MORE CHOCHOLATE MY LEGS ARE TO WEAK! ha ha. I don’t always say what is in my mind around my loved ones but then other times I will have an outburst. I nursed my friend 3 years ago through terminal cancer, I spent every day with her for almost 7 months just visiting and offering lifts and having her kids over, anyway I digress I asked her why she picked me to be one of the only friends she wished to see every day and it was because I made her feel normal. Love to you and your dad. xxxxx Post 10 posted on 25 February 2008 at 11:17:37

Mums are heavenly angels

I always sit here every night and read the carers comments from loved ones such as partners, mom’s dad’s, brothers and sisters and they always sound so angry and upset as they have every right to be. I sit here as a patient the cancer sufferer so to speak and these I must add are merely my feelings about how I feel. My mom is so angry that me her daughter has to go through this and she is so overly fussy and growling at people who dare to look at her daughter the wrong way with her bald head or any person not being kind she bites and makes them aware that her daughter has CANCER. My mom has the biggest heart imaginable and she makes me feel so loved but it hurts my heart seeing her so angry when I just want her to know that its ok, she doesn’t need to search for blame or answers as to why us as a family etc. I am totally at peace with the fact I have Cancer, don’t get me wrong I don’t want it and hate it and feel crappy sometimes but the bottom line is I have it and its ok.

My point of this post is that I am a mom too, I have the most amazing children my daughter and my son whom I adore and as my mom reminds me I would be every bit as protective as she is. Tonight my son felt sick and I instantly ran around tending to him and mad him comfortable and he is on my mind now wondering will he be sick in the night and will I hear him. Love truly is an amazing bond and every loved one around us feel the impact of any illness of those close to them. I know too as a cancer sufferer we can feel anger and bitterness as we go through the various stages of denial, fear ecc etc but there is an acceptance that I feel. I know this journey is going to cause my mom so much heartache bless her even if I get through my treatment and into remission she will always worry and I wish I could give her my feelings bottled up and the knowledge that I swear its ok. I keep saying that because that is the only way I can verbalise it.

I titled this post as mum’s are heavenly angels for my mom and the mom I am and any mom who relates to what I am saying. That is not to take aside heavenly dad’s, brothers, sisters ……..it was just to emphasise the fact that it doesn’t matter that I am 37 and a mother myself my mom will always see me as her baby and her mom saw her like that and so on and so on. To all those carers who have cancer in their lives my love and thoughts are with you as I can see how hard it is. And to those who have cancer my love and hugs go to you. I feel proud of myself everyday that I get through. xxxxxxx

Post 1 posted on 26 February 2008 at 00:14:55

Sat here crying and cannot keep this emotion to myself

Hi my name is Sarah and I am sure a few of you may have read my previous posts about how I feel sometimes about a carers perspective on cancer I titled it I will open up today it explained why I had stayed quiet and avoided the forum even though I think people are amazing on here and bring so much kindness and support.

Today though after reading some posts I am again in such despair and crying as I type this because what I read from the eyes of some carers was so so distressing to myself as a cancer sufferer.

I am not here to upset anyone with my post but if I as a cancer sufferer read something like that written about me by a family member or carer etc I would be absolutely heartbroken Its like its being written about something and not someone. Its like the carer is only seeing the cancer and not the person. HOW DO YOU THINK THE PERSON FEELS! Yes ok as this hideous illness progresses it may change the appearance of a person or even their personality but can you not look past that and just help and assist but to see that person there no matter what. If a person has a deformity then as we get to know that person we see past that and see them as who they are not what physically is before us so when you look at your loved one with cancer can you not look past the physical. Yes of course you are angry it is ravishing the body and soul of your loved one but the most important thing well to me anyway is to no matter what be looked upon as normal STILL ME. Don’t pity me but be with me unconditionally, isn’t that was love is all about?

My friend died and she was terminal and yes obviously her appearance and mind changed toward the end but the most touching thing I witnessed was her children grooming her nails and dry skin and kissing her feet while she lay there, it was the most moving thing I have ever seen it makes me weep even now but the whole room was filled with so much love for their mom and not once did they look as if they were looking at a different mom, they still saw the mom that had cared for them their whole lives despite her appearance being so different then. I am probably not making sense as I cannot really go into detail as I do not want to upset people on here but to care for cancer must be so hard I understand but to have cancer is hard to and our souls are still in tact and I know its tiring, upsetting and stressful to watch a loved one going through cancer whether its treatable or not but if you love someone you do everything you can for them and if you love someone you don’t mind using your time for them and if you love someone you know them well enough to look past the disease. Maybe I need to speak with more carers in our local support groups here in my town to relate better because I know that I am going to now come across as if I don’t relate to any but I do I promise you and this post is not to hurt its to hopefully have comments that will guide me to a better understanding and for me not to get so hurt and upset by what I read. I think this forum is wonderful and a lot of the help I have had has been from carers but I had to speak out as that is what this place is all about isn’t it? Much love to all. xxxxxxxxxxx

Post 1 posted on 28 February 2008 at 09:23:25

POEMS

Despair

Into the darkness I have fallen
Drowning in deep despair
The pain and hurt never leave me
I feel like a fish out of water, gasping for air

My eyes see the world so dark and grey
I cannot see the light
The tears will soon run out
I long for strength to win this fight

Is there anyone who can help me?
Can anyone give me hope?
In a world I no longer love
In a place I cannot cope

I want to see the world’s beauty
And find my old happy life
I want to have a purpose
More than just mother & wife

Time is the greatest healer
That is what they say
So I pray for hope & happiness
To shine light on this dark, dark dayPost 1 posted on 28 February 2008 at 11:36:27

HOPE

Today I had a gift
A long sought after dream
The world looks so different now
Different than it did seem

This gift has brought new hope
A light has been switched on
The negative thoughts are fading
In this dream they were finally gone

In one day it has taught me more
About the way that life should be
I want to share this hope
Lift your shadows, help you see

Life is what you make it
A phrase I hated to hear
But now I understand the meaning
And am happy to be here

I have not found religion
I find it hard to say
Share my new found insight
About the gift I found today

You must wonder what it is
That has turned my life around
Just a simple act of kindness
An act once lost now found

To have bad you must have good
To have mean you must have kind
Look for your piece of kindness
You will be surprised at what you find!

Post 2 posted on 28 February 2008 at 11:40:38 I am out of my dark place

I have stayed away from here as some of you may know as I was not coping well with certain things. I have been reading though and watching silently every day and have seen such support and love still from this site.

Its so hard to verbalise correctly or in a way to make your emotions truly understood. Anyway I have been so so down I wont deny that because I was stupidly reading statistics about my cancer and stuff like that and staring at myself in the mirror plus I have my period and PMT from hell so I do not think that helped. When I see average stats for my particular cancer and it says average prognosis for 63% etc with other factors is 10 years I sit there thinking 10 years! That will make me 47 and that’s not enough!!!!!!! I then see the longest survivor that I can find and they have been in remission 19 years and selfishly I still think that is not enough!!!!! 57 ???? To me that is so so young still. I was then lying in bed on mother’s day crying and had told everyone I just wanted to be left alone and as I was lying there I looked at a photo of me that was at the bedside and I looked at my copper colour curls so long and girly and my huge smile and how well I looked and then I jumped up and stared at myself and could not believe how I look now in such a short time. Totally bald, pale, dark circles around my eyes and a swollen tummy from the chemo and it just made me cry and cry. So shallow though really as I am the first to preach to people about how appearance does not matter etc but it wasn’t that it was just I guess how the disease was there before my eyes and it scared me.

I am normally such a positive soul and I smile so much but the last few days I had become like a miserable Victor Meldrew and was not pleasant. Well anyway I let it all out to my amazing fiancé the other night and I finally blurted out my fears and he put me straight on lots! He is such a positive person but more so very logical and was able to explain a lot to me about stuff. God I am not making sense again am I! ha ha. I am just here to say that I am not going anywhere I am not giving up to this fight and I am going to smile more, laugh more, occasionally swear more when I need to and make sure that no matter how I feel that I get the most out of every single day as I love my life I love people, wish I could help more though as that causes me hurt but as I read from everyone here we are all the same wanting to help, needing help ourselves. I have the greatest respect for carers and sufferers alike and although I find it hard reading some stuff at the end of the day there is no one here out to intentially hurt its just all the hurting inside manifesting sometimes and coming out in a crazy manner.

I have already gained so much from this site and some wonderful friends and everyday there is a cry for help here and everyone reaches out. I feel today like bloody Darius (if anyone remembers him) and want to give a virtual hug and say THERE’s A LOT OF LOVE IN THIS ROOM! ha ha (((((()))))) Well I am off for a bit to make packed lunches and some brekkie for the sleeping 3 upstairs (my angels) and then I really need to get my act together and do some cleaning!

Post 1 posted on 05 March 2008 at 07:12:09

Cancer is not a punishmentHi. Haven’t posted a lot lately but been nosing as usual! Anyway I have had such a rough week with chemo side effects and just got way too much spare time on my hands. I wanted to just say I read so much people saying why has this happened we have done nothing wrong or what have we done to deserve this but I honestly don’t feel like that. I don’t feel that Cancer is a punishment for any bad sins I have done in my life. I really don’t think the world works like that. Cancer is just something thas has happened to me, not something I think I have caused although that could be argued as I smoke but don’t drink, am overweight don’t exercise much but like lots of people.

I don’t want cancer but I don’t blame anyone or anything and it can happen to anyone, no matter what walk of life etc. I am scared and I am unsure of my future now but everyone is living with a timebomb really if you think about it, we here all the time of sudden deaths and tragic accidents so I just see it as I have been told maybe I will die sooner than expected at my age but nothing is written in stone. My body will either get through this or it wont but I stay positive most the time and on my down days I have a good rant about god I may die soon. I haven’t yet though thought WHY ME?

I want to use my cancer journey to show those around me that you have to live every day as if its your last and embrace every wonderful moment and know that even the darkest of days wont last forever. I lie in pain at night sometimes crying and crying but only because I want to feel normal I guess and have my life back but for now I have my amazing children, my partner, my loved ones and for everyday I awaken and see that I am truly grateful. I will never give up my hope or my faith and if this life of mine is not to be as long as I wanted then there is nothing to do but accept that.

Maybe I am just a silly little dreamer with too much puffy love stuff in my head but I truly love life and when I see kindness and love it makes me heart swell. I have cancer yes but its not my soul and it never will be and I will shine through if you look closely. xxxxx Sorry if my thread makes no sense CHEMO BRAIN is a bugger for bringing out the verbal diahorrhea in me Sarah xxxx

Post 1 posted on 14 March 2008 at 19:45:47

Could I ever have a baby or am I being stupid thinking it!

Hi all. Strange topic this but its on my mind a lot but I have no one to discuss it with and I just wanted any feedback if possible. If you read my profile you will know I have incurable NHL cancer but I am being treated and if successful I hope to have as long as possible in remission but my partner is 10 years younger and our plans before I was diagnosed was to look into IVF to have a baby. His parents said they would pay as they would love a grandchild. I was sterilised at 25 though but when I was ill last year I had a gynae op and they saw that my clips had come off but my tubes were flat and a mess. I was going to look into sterilisation reversal but what with all that has happened now it seems a no go.

What I want to know is would I ever be able to be considered for IVF or even adoption being that I will always have incurable cancer. When I was diagnosed I said to my fiancé through plenty of tears How can you possibly spend a lifetime NEVER being a dad, his answer was how can I possibly spend a lifetime without you. It breaks my heart though knowing that a baby does seem now impossible but is it??? Do I have any hope or should I put that dream away and just get on with our lives together. I would really love any honest opinions on this and I promise I am not easily offended ok.

Right now though in all honesty the way I feel, sicky, achy etc down babies are the last thing on my mind but then when I am around babies I think what if. Maybe its the wrong time to ask something like this but I just don’t know how to get any info on this.Sarah x

Post 1 posted on 02 April 2008 at 20:15:42

My silly mind, long read not for the easily bored.

I am sat here alone, the way I like it to be honest in this mess. Glad to be alone so my loved ones don’t have to suffer seeing me like this AGAIN. I wasn’t going to post or speak today but then where else can I let out my deepest darkest thoughts. I have to do it somewhere and I apologise for doing it here but I have to get things out of my head in order to make it clearer. I am destroying myself with my mind right now, torturing myself I guess with thoughts racing around and around. I cant handle having cancer.

This is so hard to verbalise, it always is. I have been crying so much again and pushing away those around me as I cant stand them seeing me like this. Yesterday I was so ill, my throat is sore, my mouth is full of ulcers my whole body feels bruised. It hurts when even a small hug brushes against me or a reassuring hand strokes me. How must that feel for my family as I wince when they touch me? I rang the hospital yesterday as I was feeling so ill and they said just take painkillers and if I feel worse get to casualty as they have stopped admitting to the wards. Also they said just ring the day unit and speak to the nurses. Don’t get me wrong my team are doing all they can I guess to treat me but they make me feel so stupid when I don’t feel right. They are only interested if I have a temperature or constipation but what about now when I am feeling so crap? I guess I can cope with the physical pain, I know the drill by now, have to feel worse to feel better.

Anyway I got up yesterday as my ex husband had the kids but was working so his missus had dropped my daughter off to my house and left my son at his rugby match. They were supposed to stay with him but my ex was too busy and his missus said it was too cold to stick around. I lay in bed knowing I had to get up as I wanted to support my son at the rugby and not leave him alone. My partner lay in bed next to me and I was thinking about all the dishes downstairs and now the kids were back I would have to cook dinner for them as well as tea. I started sobbing and in temper got up and was clashing dishes about and putting the beef joint in the oven. I felt totally spaced out though like I wasn’t really here. I got dressed through tears of anger and pain and we went to the rugby where I yelled and supported my son. I started feeling better just being there and didn’t care for myself. My parents then came over after the match and I was trying to make sandwiches and I dropped a bottle out of the cupboard and it smashed sending the plates everywhere, I was sobbing, shaking and trying to be organised! My mum gently calmed me and told me to go to bed and she would stay and sort everything. I took her up on her offer and slept as my mum ran around cooking dinner. My man woke me at 4pm and dinner was served. We all ate and my father had gone home to leave my mum in charge. Anyway I am talking crap and this all sounds so meaningless reading it back, I don’t seem to have a point!

My point, well my mum went home, everyone was happy and fed and I had pushed everyone away all day with grunts and glares. I had Saturday evening alone with my fiancé and we watched films and although I wasn’t feeling great it was nice. As the evening wore on though I was feeling lousy again so as he turned to me in bed I shrugged him off and said I felt so ill I just needed to sleep. I saw the hurt in his eyes but I avoided him. Last night again I saw the hurt in everyone’s eyes but again I avoided eye contact with them. I am dying inside with how I am feeling. I lay there in bed last night thinking I feel too ill to me cheery and give my smiles and cuddles and love and I think oh well I will make it up to them all when I feel better, but what if? What if I don’t feel better, they are going to have all these memories of me being like this and them feeling absolutely helpless around me.

I awoke this morning sobbing, its a joke! I was in pain I felt sick, just early morning feeling along with chemo effects. I nuzzled my man’s jumper as he sat on the bed with me but I could not speak or say how ashamed and sorry I was for being like this. My daughter kissed me goodbye and had tears welled in her eyes and my son looked at me with fear. I pulled on my woolly hat that covers all my head and kind of most of my face so I could hide away my own eyes and not look at them. What has happened to Sarah? Sarah the bubbly, happy go lucky, normally strong person, so careful of her appearance, so particular of how I come across to people. Now we have Sarah with no hair, Sarah pale skin and pained look on her face. Sarah who doesn’t speak much but if only to moan. I look around me and see normal people, girls doing their hair and make up, checking their appearance, that was me once but now it all seems so trivial cos all I want is to survive. Its not trivial though I am just too consumed in the world of cancer.

I knew this thread would be crap and so hard to put into words how I am thinking, it still doesn’t have a point or read right. I cannot stand putting my family through this, you know how the carers say how it hurts so so much watching their loved ones being destroyed and not able to do a thing. I am that loved one, but I am feeling the hurt too. I feel so so guilty for putting them all through this, their hurt is my pain. I don’t want to be remembered like this but its happening. I don’t want to be like this but I am. Its so horrid that my mind is fighting but the body is not, you say in your head stay strong, be positive don’t give up don’t be weak but your body is crying and tired begging to rest. Then as you give in to your body you feel ashamed for being weak and not fighting. This is the hardest journey for everyone, carers, patients etc etc but how can it be made easier? How can everyone understand everyone’s thoughts and feelings?

I have not done this thread to hurt or anger or upset just to try and shed light on how cancer is affecting my life. I read posts on here and

people word things so well and you gain comfort then from them. I guess anyone reading mine needs to have a very analytical mind and try and re-arrange all the crap in it as I cannot for the life of me find the right words.

Anyway I find out tomorrow if my treatment is working, maybe this is why I am going stir crazy, I want to know but I don’t. If its good news what then? If its bad news what then? Cancer is never leaving for good apparently so will I miss it? Will I feel like its in prison and fear its release when it comes after me again? I love my life, I am grateful for every breath that I take, I am blessed by so much love around me BUT there has to be a point to all this? There has to be a learning curve doesn’t there? What is the bigger picture?

Love and Hugs to all. Sarah xxxx

Post 1 posted on 07 April 2008 at 08:51:53

I am ok.

Hi just thought I would drop in to say I know I haven’t been posting much lately but I am ok, well alive anyway! I have had a few hospital visits as I had a suspected DVT so had to have some blood thinning injections into my tummy, hurt like a giant bee sting but scan this morning showed no signs of clot so that’s good news. Had cycle 5 chemo today and well I feel sick and woozy as usual. Don’t know what this next couple of days will bring but going to try and stay positive through it.

Haven’t been on much cos just haven’t known what to say, am very up and down right now but cannot properly verbalise how I feel so have stayed quiet. My mind feels numb and fuzzy but not really down as such but just a kind of nothing. Maybe its a defence mechanism not for me to think too much. I am a bit offish I guess and I wasn’t that responsive to my nurses as they took 4 attempts to get a line in and even though I know its their jobs I just felt pure rage. I didn’t say anything though and just gritted my teeth, they did keep apologising for hurting me but I couldn’t bring myself to speak.

I guess I have just had enough of all this crap, I will keep going and get it finished but I have had enough of all this medical invasion and the fact that this has taken over my life so much. I was also looking around at the other patients in the room with me thinking, hmmm why were we chosen for cancer. I don’t even think like that normally, I don’t believe there is any reason we get cancer, what I mean by that is there is no one to blame etc and I certainly don’t think god hands it out as punishment etc. The worlds a crazy place and I guess no one can truly know why things happen as they do. I just intend to get on, get better I hope and carry on living life and following dreams.

Love and hugs to you all. Sarah xxx

Post 1 posted on 21 April 2008 at 22:56:06

Thanks Chris, Fran, Looby, Sue & Mayte for the well wishes. I had chemo yesterday and the evil nurses took 4 attempts to get a line in my veins so I am bruised to high heaven! I am in total bitch mood today. Not feeling too bad though, had a little nap earlier. Feel bit sicky and no taste buds but not as bad as I thought I may feel today. Hospital rang to tell me that I am having my bone marrow biopsy next Thursday 1st May at 2pm to see if it is clear, if it is I go to Cardiff to have my stem cells harvested and frozen for the future and then one more chemo and I may hear those wonderful words remission. If bone marrow is not clear then it will be perhaps a further two treatments after the 6th cycle. Fingers crossed eh.
I am feeling ok, bit muddled but still smiling and swearing hee hee. Must be nicer though to Hospital staff but to be quite honest have lost faith in them since they are the reason I was ill for so long. Anyway I am feeling pretty good considering and am hope tomorrow will be ok too. Love and hugs to you all. Sorry if I am crap at responding or messaging lately. I do think about you all so much and even if I don’t say it you have to remember that ok! xxxxxxxxxxxxxxxxxxxxxxxxxxxSarah

Post 11 posted on 22 April 2008 at 19:21:45

Oh my god I am living in the bloody twilight zone aren’t I!!!!!!!! SINCERE APOLOGIES FOR REPEATING MYSELF TOTALLY!!! just looked up at my posts and realised I had already said about the nurses having 4 attempts!!! I am such a chemo brain bimbo! lol. So sorry, I pray to god this isn’t the start of my brain cells dying off!

Right then if I repeat myself again just let me know ok! Love and hugs AGAIN hee hee Sarah xxxxx

Well what a day yesterday! Felt like absolute crap! Spent most of the day on and off in bed and then when I finally settled in bed with my man, didn’t get to sleep until 3am! We had a fit of laughter over nothing at 2am well I did, which then turned into hysterical crying on my part. I tell you what I think my head is shot, my emotions are all over the place! Got up this morning feeling sick still, just had some toast that tasted of metal, yuk yuk. Am determined to stay awake all day today and ride through this bloody sick feeling! Also in a very I hate being bald mood! Sick of seeing my reflection!

Hope everyone is ok, love and hugs to you all. Sarah xxxxxxx

Post 21 posted on 24 April 2008 at 09:29:13

I know I am being silly about the bald head business!!! I used to do so much with my hair though it was my way of changing my moods! lol I used to go dark to be serious and mysterious, red to be fiery and fun and blonde to feel like a glamour puss! lol Grey although present didn’t get a look in on my head!!!!

Anyway went shopping yesterday with my daughter like I said to get her prom shoes and jewellery and picked myself up in Debenhams a stunning denim bandana with hair attached, loose gorgeous brownie red curls! I wore it all day yesterday and I felt a million dollars, like some hippy chick. lol

It was so comfy, much comfier than my wigs cos there is no hair just the bandana then the hair attached to it. I would have peed myself laughing though if someone had whipped my bandana off though thinking they could just put that on and see my hair attached to it! Anyway girls its a useful tip and they are only 39 quid and look so good.

This morning I am feeling ok not sick but my mouth is sore again and I have a very sore throat and neck area, my tongue also feels bit stiff and sore but I am drinking a nice cuppa tea and I am going to drink plenty of water today. Its raining here too so that’s a bit crap but I have lots to do, Sunday’s are always busy when you have kids, uniforms etc. Hugs to all. Sarah

Post 27 posted on 27 April 2008 at 10:02:57

Hello all, its Monday morning and I feel as if I have swallowed a bloody golf ball!!! I can feel the chemo, smell it, taste it, honest its so hard to describe to people around me when I say that. I am sore to touch again but this is not a miserable moaning post honest, I am feeling happyish honest!!!

I was in a foul mood yesterday and such a cow, gave my bloke a right earful several times for nothing really, how he puts up with me is beyond me. Thank god the angels sent such a placid soul to me. I don’t really know what else to say yet as the day has only just begun and I am going to be sorting out my paperwork today with my mum, we are getting through a list of things I want done so today is bill day! I will check in later to see how you all are. Hope you are all ok, thinking of you all, I really do think of all of you lots. Hugs Sarah xxxxx

Post 30 posted on 28 April 2008 at 08:39:28

Hi all, thought I would post on my own post to say that I didn’t have my bone marrow biopsy done today! I thought it would be better to post on here rather than try to pm lots and anyway may as well let you all know what a Wally I am! I had brekkie this morning at 8.30am and my biopsy wasn’t until 2pm. Anyway me and my mum went out and when we got back at 11.30am my mum pinched one of my choccie sweets MUNCHIES, now I am not normally so possessive over my sweets but I love these particular ones so I grabbed them off the cupboard and ate the last 5 of them! As I did it I thought oh god I hope I was not meant to be nil by mouth for sedation. My mum said you better ring the hospital, I rang and they said to come to the Hospital at 2pm and the Dr would decide then and I should not have eaten anything for at least 4 hours before but preferably 6. Got to the hospital and the Dr said they didn’t want to take the risk of sedating me as I had eaten at 11.30am, I tried saying 5 munchies was hardly a meal but they wouldn’t have it, they said I could have it without sedation and the nurse said I will hold your hand to which I lost my rag a bit and went into a big rant about did they know how painful it was and I had enough with them wrecking my veins last chemo and that quite frankly I could quite easily tell them to go F off for all they put me through! The nurse looked horrified at me, I said look ok I am in a bad mood and I am not gritting my teeth and being a brave girl!!! NO sedation NO co-operate OK! Anyway the Dr seemed less phased by my tantrum and said she totally understood and we would re-schedule and I could have it done next Wednesday at 2pm.

I am pretty gutted but part of me isn’t if that makes sense, I just have so had enough of chemo and being in pain and being sick that I just wasn’t up to being brave today. I came home and cried and cried and have been very tetchy all night because I feel so much like saying NO MORE to everything but I know I cant but its a horrid way to feel. I know this is awful but I feel like I am doing all this for my kids and my man and my family but not for me right now, yes I want to live but I am so tired of feeling ill and want all this nightmare to just end.

Anyway I know that we all get to feel like this and that I will pick up and once treatment finishes maybe I will look back and think god it was worth it, just don’t feel like that now that’s all. Its also hard cos I would give anything to actually meet with you guys on here and see you face to face to talk about my fears and worries, its not the same pouring your heart out to loved ones etc who cannot really relate to where I am coming from. I really need to talk with someone who is in my position with cancer, having chemo etc and can totally understand what I am saying.

Love and hugs. Sarah xxxxxxxxxx

Post 34 posted on 02 May 2008 at 00:34:11

Allison, thank you so much for your post which made me screech laughing and my mum came running in to see what was up! I read it out to her and she said oh I feel so awful about pinching your sweets etc, etc. Don’t worry most my family have laughed at my greediness! Dan phoned his family on the phone that I hadn’t had the biopsy done due to complications, he said he was too embarrassed to tell them the truth!!!

Well today actually physically don’t feel too bad apart from my red raw mouth and tongue which is driving me crazy! I also awoke hysterically sobbing cos I had a nightmare about my mum dying, I wont put the whole bloody morbid dream on here but in it I was so hysterical that I strapped my mum’s body to my back with my dressing gown belt and was carrying her around sobbing and not letting anyone near her. I have truly lost the plot! I know its cos my mum has been bit poorly this week with her diverticulitis and I am so worried that I am going to send her to an early grave with all the worry about me. She wants to be with me all the time and I love it but my brother had a bit of a go saying he thinks mum does too much. She wouldn’t have it any other way I

swear and I do help lots, she just cant keep still. Well this morning we have been cleaning all the house, just having a break after doing all upstairs, she bought me all new bedding too cos Dan’s family are coming to visit, they are Italian and they hated me to start but now I have cancer they like me!!! lol

His older brother is coming too who hasn’t been here since Dan moved in a year and a half ago so my mum wants the place to look amazing!!!! We are going to crack on after I have eaten my two buttery crumpets she has just put in front of me. I think a wash is then in order as those Italians kiss you both cheeks and I may knock them out with my stink at the moment.
The desert island sounds like an amazing idea!!! I am all for it, just tell me when I hope you are feeling bit better today, the sun is shining here and I hope it is there too for you.
To everyone else who reads, hello, good morning and have a great day. Love and hugs and warmest wishes to all. Sarah xxxxxxxxxxxxxxxxxx

Post 37 posted on 02 May 2008 at 10:14:01
PS I swear I didn’t eat those sweets to get out of biopsy but I did eat them to stop my mum having them! lol Hi all, just thought I would update my thread. Been really low emotionally lately but physically been feeling good, not anymore though after today! lol

Had bone marrow biopsy today so am spaced from sedation and so sore I can only sit down with one arse cheek in the air! Anyway the Dr wanted to see me today so I shit myself and boy have I got a busy few weeks. They explained that I am to have chemo 6 on Monday then Wednesday they want to see me with the team to discuss my results. If my bone marrow is clear they want me to start a 5 day course of injections from Friday every day and I have to inject myself into my tummy to build up certain cells ready to go to a Hospital in Cardiff for my stem cells to be harvested and frozen for the future. I will then have another meeting and another CT scan and they will discuss the future with me about controlling my cancer. If my bone marrow is not clear they will discuss with me how I can live with leukaemia and they may try two more extra chemo cycles but not sure, this part came as a huge shock as I didn’t know I had bloody leukaemia!!!!! I thought I had NHL but I do have that but apparently cos I have bone marrow involvement its in my blood and that means the two come hand in hand!!!! Two cancers for the price of one eh!!!!!! FFS!

So the bottom line is it all hangs on me getting my results of bone marrow biopsy on Wednesday! Chemo Monday, future news Wednesday so will probably be like a loony until then!

I mentioned today also that I had a pain over last few days that feels like someone is sticking their finger into my tummy, I pinpointed the pain and they said that was my stomach, I used to get the pain before I was diagnosed but since chemo it had gone but now it is back but my Dr kind of brushed it off and said maybe it was me stressing that was causing it!!! I think if my bloody head was hanging off they would blame stress!!!!!! lmao

Well I hope you are all ok, love and hugs to all. Still on this tough journey but rather be on it than to be chucked off!!!! xxxxxxxxxxx Sarah

Post 58 posted on 07 May 2008 at 21:44:05

Hi just wanted to pop in and say I am feeling good Not too sore at all and had a good day, am feeling very positive lately. Last few days have made me think lots and I am just happy to be here! I know I will cry lots and still get dark days but I am happy in life right now and although I have chemo on Monday which I detest I know it is something I have to do right now. As for that Leukaemia thing the Dr said I have looked and looked online and I think he just said the wrong thing as he is a blood specialist I swear he got his words mixed up cos I have Non Hodgkin Lymphoma and I think he just cocked up saying I had Leukaemia in my blood!!!!! There is no such thing as far as I can see but I will challenge him about it next Wednesday! He will be saying I am a transsexual next!!!! LMAO

Anyway I cant even spell frigging Leukaemia so I cant be having that, NHL is much easier to say

Well I hope you are all ok and I am going to post some new pics the weekend of my daughters prom which is tomorrow and also of me looking like a loony alien Love and hugs to you all. Sarah

Post 63 posted on 08 May 2008 at 20:49:05

Good morning all. Thought I would post my good news. My bone marrow was clear so I start injecting myself to get ready for my strem cell transplant at Heath Hospital Cardiff week tomorrow. Start the injections Friday. Then its a CT scan for me again and then 9th June meeting with the consultants to discuss my future and let me know when I can have some sort of life back such as return to work, go on holiday etc etc.

Had chemo yesterday and felt like crap, was actually retching on the way home from it yesterday and during it which has never happened to me before normally the next day I start to feel like crap but yesterday it was immediate!!! Nice!!! They give me good news but make me so sick I don’t feel like bloody celebrating. Already had my nasty head on this morning ranting at my bloke about the fact that I always have to get up and give kids breakfast and make his sandwiches! lol

Anyway I am going to try and get through the next few days I know it will pass and look forward to a 6 hour transplant next week! ha ha

Love and hugs to all, maybe just maybe I have been dealt the get out of jail card and hopefully I wont go back for a few years!!!! I am not allowing myself to be too optimistic though or it will bite me in the arse so I will just take each day as it comes and live for today xxxxxxxxxxxxxxxxxxxxxxxx
Post 68 posted on 13 May 2008 at 08:15:12Stem Cell Harvest not Strem Cell Transplant as I bloody put!!! lol They will be freezing it for the future! Maybe I can have it back in the form of lolly pops! xxxxxxx

Post 69 posted on 13 May 2008 at 08:17:06

Hi all, thought I would post as I have not been chatting for few days. Had chemo 6 (last one) on Monday and feel sick as usual, also had some wonderful stomach cramps and fights with the toilet and after hours of endless rocking am only able to produce mere rabbit dropping poos!!!!! Sorry for details but I know Allison will appreciate them! Hate the bloody taste in my mouth too which is making everything taste like gooey metallic YUM YUM! Never mind I am sure it will wear off in couple of days. Feel better today than yesterday so its a start.

Well I have a very busy few weeks and I am petrified. Tomorrow I start my G-CSF injections to boost my stem cells, having a lesson at the hospital at 3pm to learn how to inject myself correctly, side effects are bone pain they tell me, hey like I don’t get enough of that already! lol Then Hospital Tuesday to test my CSF levels whatever they are and if they are good off to Cardiff by 9am to have the stem cell harvest, will take 6 hours approx I am told. Got my package this morning of lovely drinking stuff for my CT scan then on 30th May, mmmmmmmm yummy again and then appt 10th June to see my oncologist and discuss my future.

Had a little weep last night cos I am just so scared, don’t know why, just keep hearing my Dr’s words last week saying to my mum yes this should all work but as you know Sarah is not curable, I know that but I hate him saying it and it makes me feel like how long have I got then Doc!!!!!! I keep thinking aswell about the average life expectancy being 5 years for bad stats (mine) and ten years for good, I know I shouldn’t cos I am not a bloody statistic I am me and I could be different.

Anyway I am not turning into Moaning Myrtle I promise, just bit fuzzy right now and full of so much in my head but know I will work through it, anyway I have my hair growing back to look forward to hopefully in about 8 weeks and pubes and hairy legs to boot!!!!

Well at 6pm tonight even though I still felt sick I rang my sister in law and said fancy bingo! We went and I didn’t win but I had a great time, its sad I guess that bingo is now the thing that gives me excitement in my life but I just love those jumbo blotters and the music is so cheesy I just love it!!!! ha ha

I wasn’t going to mention this today but sod it I may aswell, I took Jess to the hospital to go for her follow up after her gastroscopy (everything is great) anyway it had been raining and I had really slippy boots on, we were in the waiting room and it had about 8 people in it and then Dr Cosgrove popped his head round the door and said Jess you ready, I went to get up and well BAMBI ON ICE if you have it to watch was me and I ended up on the other side of the waiting room after going arse over tit, smashing my knee and skidding face down in front of a very large lady eating her sandwiches and crisps!!!!! I was horrified with shame, my daughter bless her did not laugh and was so concerned BUT Dr Cosgrove was pissing himself laughing!!!!! So was I mind but he picked me up put his arm round me and laughed his ass off all the way to his room. My knee is bruised but not as bruised as

my ego!!!!! Anyway I thought I would share that with you. I am off now to watch a bit of TV with my man after spending the 30 quid he gave me and coming home with nowt its the least I can do. lol
Love and hugs. Sarah xxx

Post 87 posted on 15 May 2008 at 22:54:31

Hello all, well just thought I would pop by to say I had my injection lesson today and it was not at all bad, injected myself shaking like a loon but it was fine. Think its better when I do it myself as I am expecting it more plus I cant blame anyone for hurting me!!! lol

I have had a great day today, felt bit sick but been glammed up in my wigs and went to my son’s Rugby presentation where he won players player of the year!!!! I am the proudest mummy on earth tonight. I adore my kids and they make every day in this world worth fighting for.

Well that’s it really thought it be nice for me to say positive stuff tonight and to share the fact that I have smiled so much today, will have a little victory weep later too probably but tears of happiness! Love and Hugs as always for all who read my babble. Sarah x

Post 90 posted on 16 May 2008 at 21:35:02

Hi all. I am finally able to write I hope about how I have never felt so sick in all my life as I did last night. I haven’t been feeling great last few days, my mum though yesterday cooked me a homemade cheeseburger which well lets put it mildly did not like me! I went to bed not feeling good, just acid reflux and heartburn, I then was in the most excruciating pain ever, it felt like I had swallowed raw acid and the room started spinning, I felt like I was going to fall off the bed. I started crying cos I was so scared and then my stomach just started retching so violently that the pain was worsening. Anyway my mum who had stayed the night heard me crying and Dan bless him didn’t know what to do so my mum took me downstairs where I was then in all fours vomiting into a bowl on the middle of the living room floor. I was sick until 4am and had very little sleep until I got up at 7am, still feeling sick.

Went to hospital feeling ghastly to have blood tests for my harvest tomorrow and they had to take my blood from my wrist as not to wreck my arm veins for the harvest. Well one of my nurses who always upsets me said oh Sarah you have only been sick cos you always get yourself so worked up, you really need to start being more positive, you don’t half get yourself in a state!!!! I could feel the tears pricking in my eyes but held them back and said no actually I was throwing up cos of a cheeseburger and acid reflux!!!!! She then started digging away into my wrist and hit my bone as frigging usual and I winced to which she then said oh come on now Sarah take the pain will you so we can get this over with!!!! How dare she!!! I am so so upset today about this woman, she does not know me, how dare she say such things to me, I am also sick to death of people telling me to stay positive and cheery and you can see their disgust when you actually are down or say you feel crap!!!

So I get home and then the hospital tell me that my bloods didn’t make the grade and the stem cell harvest will have to take place now Thursday and I need to inject myself a further two times tomorrow and one on the day of the harvest, I could also be there until Friday. Just as well really I guess cos I feel like absolute crap and still feel sick although haven’t been for a while and just so so so so down and angry at people who have no idea of who I am who I was or my life and putting in their two penneth worth of how I should frigging feel and deal with my cancer!!!!!

So sorry guys for this very negative post but this is real life isn’t it and right now I am living it. I love you all, and I am still around to support if needed I promise. Feels better to get this down, even though its made me teary again but hey crying is a good toxic clear out I think.  Love and hugs as always. Sarah xxxxx

Post 92 posted on 20 May 2008 at 19:53:38

Hey all, well my stem cell harvest was a total success!!!! They said it never normally runs as smoothly and I should feel really proud I got this far. The nurses and Dr’s was absolutely first class to me and so much better than my lot at my hospital!!!! Even the Dr at Cardiff said I should not take any shite from my Nurse etc and they were just so informative and explained everything to me.

I had horrendous night and day through to Wednesday with the worst bone pain I have ever experienced and my body was spasaming (is that a word?) and arching with the pain. Apparently though it was to be expected as they explained to me today at Cardiff but my nurses had said nothing about it!!!!
Anyway I am home, and I just have my CT scan next Friday now and then meeting with consultants on 10th June and hopefully I can start enjoying life again and getting on with normal things. I am so so glad that this week is nearly over as it has been tough as hell but I am slowly seeing that light at the end of the tunnel.
Love and hugs Sarah x

Post 100 posted on 23 May 2008 at 00:22:42

Hi all. Guessed it was time I actually posted something as I haven’t been about much lately. I had a CT scan on Friday, so just the specialist to see on 10th June to discuss it and my prognosis etc so kind of feel in limbo until then I guess. Have been very very tired lately and a bit numb and not really with it mentally in the sense that I haven’t spoken much about anything or how I feel.

I tried last night going out to Town with friends and family for first time since I became ill, I ended up in pain and with a migraine and generally felt awful, I didn’t show until I got home and cried how much it upset me last night being around everyone drunk and having fun whilst I sipped coke with a scarf and a hat hiding my bald head. I felt like the token sad case in the corner. That’s not how it was though at all and everyone said how stunning I looked and that with my funky hat I should have been in a music video but I just felt so so lost. I know I am pushing myself probably too hard as I would normally be having chemo again tomorrow but obviously now my treatment has stopped for now it is still only 3 weeks since my last lot so I am expecting too much I think.

I cant put down all that I feel right now but last night the pain in my tummy was really bad like before I was diagnosed which scared me lots and I started thinking shit is this it? Is it back already? Will I ever be well? I also thought if living is being in pain or feeling so weak is it really living? I know I am in my soul searching mode right now and I will verbalise things better soon I promise. I am still staying positive just unsure of everything that’s all. Maybe after my appt I will feel better. I want to get the I don’t care live life to the full each day attitude, I wish I wasn’t such a worrier. People annoy me more lately too which I feel guilty for!

Well I hope you are all ok, love to you and a big hug, I am here if anyone needs me.

Sarah xxxxx

Post 108 posted on 01 June 2008 at 20:03:53 I am in remission.

Hi all, just thought I would post some good news. I have been told today that I am in remission!!!! I have finished treatment and they are thrilled with my results. They did say though that the disease has almost all gone for now but there is a tiny bit of something that they think is scar tissue but it could still be a little bit of the disease but I am going to have a maintenance drug for 2 years which has been proven to keep people in remission for longer time periods.

I obviously am not curable but I can finally get my life back now hopefully and return to a normalish life I am just so happy that for now no more chemo and time to live. I wouldn’t have got through this without so many kind words from this forum and so much support.
Love and hugs to all. Sarah xxxxxx

Post 1 posted on 10 June 2008 at 23:01:46About time I did an update

Hey all, members new and old. Just thought I would update how I have been doing and what etc, also for my records so I can look back and see if I have progressed! lol Anyway It has been a few months since I stopped my aggressive chemo and I am back at full time work, well everyday and trying to do at least 6 hours, very tired though! I am having 3 monthly maintenance treatment which I have now had my second one nearly two weeks ago and it made me feel bit yuk! My hair is growing back slowly and is a scruffy overgrown skinhead now, well almost a pixie crop but not much movement in it at all! Hate wigs now and let the world see me for all my glory or not! ha ha. I felt a lump in my neck a few weeks back and panicked of course but my specialist said he is not convinced there is a definite one there but I am having a CT scan next Thursday 23rd Oct. to be on the safe side, he said we wont presume anything as cancer is unpredictable, yeh no kidding! I will get the results to this on 11th November, 3 days before my 38th Birthday woo hoo! I guess I have been lucky and have been feeling pretty good apart from the extreme tiredness and dodgy bowels! Had them before though so no change there really and it is much less painful these days so that is something positive. I have been suffering a bit with lower back pain but Dr assures me its not cancer related and just natural wear and tear so am on Tramadol for that as and when necessary and looking into Physio.

My life has changed lots not just cos of the C word but my partner lost his job 3 months ago, oh what joy so now I am the sole bread winner and the pressure is on as I would have liked to go part time but alas cannot afford that luxury until he gets another job. He is home all day and unfortunately not doing a lot unless I nag an nag an nag, something I am tiring of very much these days and I am sick of hearing myself saying the same things over and over. My teenage kids aren’t much better and I never realised how self absorbed they can be! I guess cos I am working and doing everything they just expect it and don’t stop to think that hey maybe mum needs some help! Maybe I am approaching it wrong by getting stroppy or storming off to bed but when you are tired the mind tires too and I cant help myself. I could quite easily do a runner and become a new age traveller living out of a bag roaming the country! lol My day consists of get up, take kids to school and college, drive myself to work, finish work, pick up some shopping, walk in, cook tea, do a bit of tidying and washing then off to bed for a nap for 2 hours, then get up and watch bit of TV then back to bed and start all over again!!!! Sorry to be moaning and boring you all with that but I needed to see it in black and white the reason why I am soooooooooo tired!!!!! Anyway weekends I normally clean the house and lately have been trying to have a few nights out with the girls and just forgetting the house and dancing and drinking and pretending I am a wild child, cancer free. Believe me only had two nights out so far but they are a great tonic and definitely worth the aches and pains after.

That’s what I think frustrates me the most the fact that I LOVE life and I want to do so many things but work and time and tiredness limit me but I will keep pushing because I want to get every last drop out of every moment I can and create some good memories, I have plenty but I want more and more. I don’t care even if I am feeling like crap I will manage to fit in a laugh or a smile somewhere amongst it even if it is just to laugh at myself and my situation!  There are so many amazing people on here that I want to meet up with and entertain with my weird stories and overpowering and deep outlook on the universe and I pray that I will get the chance to one day. I get upset that I cannot offer as much support on here as I would like to due to commitments and I often read the posts and think hmmmm I have so much to say to this one but then think yeh I will do it later and then I don’t and the moment passes.

All I can say is I am happy for every day I am still here, even though sometimes people don’t understand me or even on times disappoint me it doesn’t really matter because I am very happy with myself and I love my life, that means I love looking at the world through my eyes and constantly being on my search for inner peace and dreams etc etc. Life is such an adventure and yeh there are lots of bad times and pain and illness and crap in the way but that is not ME, its just moments that are happening to me but will never be part of my soul so I can smile them away in a second! Right now I am getting way too weird and probably not making any sense so I will sign off for now but my love and hugs and thoughts are with you all and I am here to chat maybe not always but I pop in daily so please feel free to drop me a line cos I will always be lurking!   No matter what we go through as carers or sufferers we should all feel proud every day that we have had a big challenge thrown at us and still manage to gather and open up on here. Don’t get angry at circumstances, use them the best you can and scream and shout and cry and laugh and just try to raise at least one smile a day, it makes you look better and it makes people wonder what you have been upto! hee hee. Love as always. Sarah xxx

Post 1 posted on 17 October 2008 at 13:41:50

Just read through and thought ooooh missed an important bit, don’t think I am all light and airy fairy every day cos believe me if I get a dark one you will know about it on here and I will have a right good rant and moan about feeling crap!!!! lol I just wanted to add that when I read back through my topics I cannot believe how ill I was on times but I swear that no matter how ill I have been I still have little ole smiley me in here and I will NEVER ever stop that. Lipstick, Perfume and a smile even if I am lying there incapable of moving I am doing it with bloody style I can tell you, my family have strict instructions on that. Being positive does help I swear and I know that is not always easy but have a good scream etc then pick up a mirror do a crazy grin and think yep you look like a nutter. It always works for me  Don’t give the bad times and negative thoughts too much air time cos at the end of the day it wont change anything and bitterness and regret are empty emotions so don’t let them linger. Laters xxxxxxxxSarah xxxxx

God hope I am not hated after this post cos I don’t half go on and sound like a bloody politician trying to sell happiness or summit!!!!! RESULTS

Well got results, my tumour in my chest is a bit bigger but everything else looks good and clear. Specialist not worried in the slightest and carrying on with my maintenance treatment and that’s fine by me! That little bugger can squat a little while I guess but with positive mental attitude I think it will shrink from my energy force! In other words I am happy, smiling and living so that’s great. Love to you all x

Post 10 posted on 12 November 2008 at 08:55:58