Hi Sukes
Your post has moved me as echoes completely what I feel too. I am a bit of a late starter compared to you am aged 40 but have a 4 year old daughter and 18 month old son and I feel so desperate some days knowing that I probably wont see them grow up. I have liver mets too, so the hope of me seeing them school etc is remote. I have spent this weekend in tears, wondering how much of their life I will get to see and thinking I didnt bring them into this world to leave them. It is so so hard and i completely understand you,
My dad is in denial and thinks “I am over the worst” now as finished chemo last November and that I will get better and not sure what my sister is on, thinks “I am in a better position than most”, probably cos I look and act so well.
It is so hard when family do not want to discuss things, my OH bless him tries, but dont think he likes to think too far
ahead,
All I can say is take each day as it comes, enjoy your children each and everyday. If like mine they will make you smile and laugh (and scream too), but I find they help me through this and when I am in my “black hole” I have to get out for them,
Anyway, sorry for rambling. I do hope you are feeling better today and hopefully things will improve.
Keep posting though as the support is immense on here,
Lots of Love
Dawn
xx
Hi All
I don’t post on here much now but felt this struck such a cord with me. I’ll be 38 this week and was daignosed last June. I tknow any of us who has children can only think the worst case scenario sometimes. My boys are 12 and 9 and my heart breaks when I think that they may have to grow up without me. My cancer was grade 3 Her+ and 23/37 lymph involved. I had chemo, 30 radio and now herceptin.
I think towards the end of chemo you feel so low. Try and hang in there. There are days now when I feel really well and wonder was it all one long, awful nightmare and I’ll wake up soon.Sadly, I am wide awake. I too have thought of leaving letters and notes for my boys but as someone else has said, how do you know what to say for events so many years down the line. I have been keeping a dairy - just since leaving hospital. My boys are too young to have heart to hearts with. Every day I tell them I love them and hope the memory will see them through. Sometimes I cry as I write the diary. It goes for days with no entry, then other days I write pages. I hope it the worst comes they can read it when they’re older and understand a little of how I have fought to live and wish them only happiness in the future.
Hang in there.
MuddyXX
Dear All,
Firstly I would like to thank you ALL for taking out the time to reply to my thread and would also apologise if I have upset anyone or bought the thoughts of fear to the fore fronts on your minds.
Reading all the comments has made me realise I am not alone in these deep dark thoughts. As a mother of any age we only want the best for our kids and grandkids. B4 BC I use to visulise picking my grandkids up from school and helping my daughters out with childcare. This thought is somewhere I don’t go to anymore as i’m scared i’ll never see it and also i’ll upset myself in the process. I have cried alot this weekend but in silence as family just keep telling me I’m 1/2 way through. They think that once you’ve had chemo thats it your okay but in many ways that will be the start of the fear alone as I will no longer be in that fish net.
I did go out for a meal with my sis on sunday to try and pick myself up and she told me that time will only help but i told her sometimes i feel i’m living with a death sentence and i don’t want to die while my children are such a young age. When I look back at what my memories were at their ages they were very vauge and the memories were more so with my siblings. I look at old people and mothers and daughters shopping and envy them. B4 i use to look at old people and think what a shame they are alone or they cant walk or hear properly but now i think they are so lucky and privelaged to have lived a long life and experienced so much.
Some of you have given me some really good ideas to starting a diary or telling family i.e. OH on how i would like them to be brought up but i’m typing this and thinking no i’m not going to tell him as i am going to bring them up! (I pray to go he hears my prayers). I look at them in a different light and try not to let things like house work, cooking, ironing and the damn telephone and TV get in the way of having time with the kids but these everyday chores need to done.
I’m going to have my 6th chemo tomorrow and then will have 12 weeks of CMF so that should take me to the end of augustish…7 months of chemo in total is hard work but the kids do make it easier as they take your mind off things.
Once again thank you for taking the time out and sharing your thoughts and fears and i’m so sorry if i’ve uspet anyone.
Lots of love and hugs to you all.
Sukes
Sukes,
Good luck with your 6th chemo tomorrow. I have my first of 12 tomorrow so bit wobbly about how it might affect me and I too have 7 months ahead before starting RT. It will take mt right to the end of the year and possibly into the New Year. You have helped me by having someone else to think about tomorrow and my hand is in your hand as we sit in our respective chairs.
Hugs Lily x
The sweetness of the women on this forum is just astounding. Lily, your posts are helpful to all of us.
I will slide my hand into yours as you go through chemo tomorrow – we will be linked together. You are also not alone…
Sukes, I am glad to hear you perking up and thinking more aggressively. If you were referring to my post about writing letters to your kids, I like your alternative better too. My intention was not to write them a farewell note, I am so sorry that it was not clear, but rather to just tell them how you love them. When my sons were babies, I kept a journal of their first few years in which I talked about how I loved them, how their father loved them, how they grew with the climate of the times. I guess it was a retro blog! More like that.
I was trying to offer the suggestion that instead of giving those thoughts power by letting them take over (can you tell I have experienced this too?) that anyone is your position take action and control to let them go from tangling your head and heart to working out of your system at least for the night.
In any case, glad to hear from you and know you are on the road. We have each been there.
Emily
xxx
Hi Emily,
Reading all the threads its so obvious we have all been there and all at different stages of chemo. The thoughts i feel will never leave us and this is hard. A journal photo’s diaries are all great ideas rather than good bye letters at such a young age so soon and also I don’t want to burden them into adult hood with the fear and memories of what is happening to me. Thankyou so much.
Lily, i too will be holding your hand in chemo in mind and thought together we will get through this. don’t be frightened its not as bad as expected. As you can see from my thread its my mind that is taking over not the physcial part. We are all in this together and good luck.
Huggs to u all
sukes
Hi Sukes,
Hope your chemo went well today. I’ve also had mine ( 3rd fec ). How are you finding the taxotere is affecting you? I keep praying to God for you,honey.
The comments on this thread have moved me to tears today. It’s a long hard road we are travelling, but thank God, we have others who know exactly what we are going through to hold our hands and walk with.Hopefully, none of us will fall down by the wayside but will always find a hand to lift us back up.Hope everyone is well today.
I do hope our OH’s/partners talk to the support groups about how they are feeling, instead of bottling it up or hiding their head in the sand! I’ve given my family members the helpline number, but none have followed it up. I don’t know why not.It surely would be helpful to them and help them to then feel more free to discuss their hopes and fears with US! That’s what is hard, isn’t it, not being able to talk OPENLY about the worst case scenerio and make plans! We need to feel we have a measure of control over events whilst struggling with a disease which is not under our control.Aaarrrgh! Does that make sense to anyone? So, to my mind, it would be easier for us if we could openly discuss our worries and feelings with our families,( obviously depending on the age of our children ) and get it all out in the open, have a good cry together,maybe make some plans so that we know our children will be looked after well. ( like taking out a better life insurance policy, for example, and asking which of our family members would be prepared to be involved with taking care of the children ).Why do we humans make a hard situation even harder? I know it would lift a burden off my shoulders to know my family wouldn’t be in hard straights financially if I wasn’t around( I’m believing I WILL be, but always like to be prepared then the worst doesn’t seem to happen ).
I’m ranting a bit here!! Only half way through chemo, and feeling fed up with it today! I’ll be fine tomorrow! This is a living example of what I’m talking about…I’m having a rant on here instead of a helpful conversation with my OH, who is downstairs watching the TV!! Part of the problem is we don’t want to upset our family members, do we? We pretend we are feeling dandy,and they do likewise!! It can’t be good,can it. It’s too much extra burden on us, NO WONDER WE FEEL SO LOW SOMETIMES!!! I don’t know how we’d cope without this wonderful place to share our feelings and worries.
God bless you all.Praying we’ll all get through this and live to see all the things we long for for our children.
Ann ((((HUGS)))) xxxx
Hi,
I bet your hands were hurting holding mine, because I was in the chemo suite for 6 hours! How did you get on Sukes? After a port put in, they could not access it. I was only the second person to arrive with a new type of port that they have not even seen let alone try to stab a needle into the right part. They thought they might have it in, second try but can only test this using iv fluids. they had missed and went through my operation scar and hit the side of the port so I got this teriible pressure and swellings all around the port with pockets of fluid. They then announced that they cannot use a port which is swollen and I would have to come back another day. I had a cry and said no I want it done today or psychologically it is going to be much harde and scarier for me to come back after an unsuccessful trip. They had a big meeting for ages, without me and finally said only through a vein and that will hurt you and you will get upset. i said after this I don’t care if you stab me in the arm it would be better. The cannula went straight in after a soak in a bucket of hot water and I was left wondering why I had an op for a port? The payback for this mess and trauma was that I am not really suffering side effects and feel fine, taking all the drugs so probably just lucky that they are working. Also I just had a massive dose of epirubicin and not a mixture of drugs and that must be a relevant fact. I won’t expect to be so lucky when I switch to CFM. I cleared the week for lying on the sofa and ended up hoovering and doing the washing. I do feel rather guilty and wish I could help someone else who is struggling post chemo.
Thinking of everyone and look forward to hearing from you. Thanks for thinking of me and just look what all those positive thoughts sent me.
Hugs
Lily x
Hi AnnaG & Lily
Had tax on tuesday and the symptons on aches and pains kicked in within a few hours. Knowing how to handle this i started the pain killers straight away. Noise is amplified and thats hard work with the kids. My vision is blurred and i just feel a burden on everyone. I just want this to be a dream but its not.
I know what you mean about us all holding hands and i don’t really hold OH’s hand much now adays as you say he sits infront of a mag or book or TV or PC and we do what we have to do to get on with the whole BC. Family just keep telling me i’m 1/2 way through and think once chemo is over everything will be okay but the fear of death will never leave.
Lily - you seem to have been through the mills and back with the bloody port thing. I must admit i’ve got a hickman line and so far touch wood its been great. Not probs at all. I’m so glad you put your foot down as the trauma of it all can be too much especially when you’ve mentally prepared yourself. Its the epi you’ve had isn’t it - just be careful with your veins as this is the real toxic stuff. i suggest when your sitting or chilling to gently massage your arm as my veins still hurt from the Epi. I had 3 epi through the cannula and then opted for a hickman line as my arm was getting real sore and veins were tightening up. Kep prune juice near by to help with the number 2 situation.
Thanks to you all for the lovely thoughts and positive comments and we pray for each other to help us through this awful blip in our lives.
Hugs
Sukes
Good evening everyone, hope you are ok and something nice happened today to cheer you along.
Sukes -You are sounding like a pro and hope all your planned tablets are having effect and making you feel as well as possible in the situation. Just think how the little micro cells feel as that lot shoots down your veins, revenge is sweet. You are not a burden, you are burdened by this disease and doing a really good job at holding everything together, for your family and yourself. I am not sure most men could deal with all of this and get back to washing and cooking in between. My apologies to men who can. Thanks for the tips on the veins, they are ok so far and the BCN are planning my return already with a bed and dart practise!!! Is that meant to make me feel better? My urge to emigrate and take my chances pops into my head at these moments, good job I am too much of a chicken than to be anything other than compliant, although I can be very stubborn like the other day when I wanted my treatment. Not sure I can swallow prunes on a good day let alone now, but will hold that thought as a last reserve!!
Anna, Emily-Jane, Muddy, Dawn and anyone on page one I have forgotten, how are you all? I have had a bright red face all day and reflux is picking up.
Take care. I accidentally typed ‘take carte’ first, so it is carte d’or ice cream instead then!
Lily x
Hi Sukes
I am typing this in word and doing some cut-and-paste as I have lost everything twice. This is going to be long …
Firstly, I‘d like to explain what happened to me and how it may relate to you … worth a try …
When I first started this chemo lark I was not well – but I was still FizBix. FizBix feeling very sick. FizBix with mega migraine. But still FizBix. It was all doable.
I read all the posts with the occasional cry of “I can’t do this any more” and thought “pull yourself to together woman!”
Then I had neutrofil problems i.e. my system was very low and they had trouble getting it back up. During this period I felt very very ill – that’s not 100% correct as I felt so ill that I didn’t feel anything. I didn’t even feel like me. I tried to think of nice things but even nice things seemed too hard. It was a nightmare. I had a horrible dream about TAX 1 killing me but quite honestly I think it was my sub-concious as I think it would have done – they had to postpone it.
I am convinced that once the body gets to a certain low point it can make you mentally exhausted/ very down. I’m not saying for everyone but it does to me. Presumably it’s the bodies way of trying to get us to conserve energy. I felt the same after this week’s neupogen injections.
This has now happened to me more than once i.e. mentally gone due to physical exhaustion. Without wanting to annoy anyone if it hasn’t happened to you yet then I don’t think you can understand – well I couldn’t have – it is a different type of low – a sort of switch-off of you. Now I’m used to it I just think “hang on in there until you feel better”. I don’t judge myself, I don’t try and cheer myself up – I just bunker down and focus on resting until it goes away. I have no children – which makes it easier.
If you think that you may be the same way then just try and hang in there. Once the treatment has stopped and your body is not under so much pressure then your spirits will be lifted naturally and your dark thoughts will naturally lighten. On the one hand I could say “thinking that your family would be better off without you is crazy” on the other hand I could say “I felt like that last week!”.
In the meantime – just do your best and focus on the finishing line and try and have as much rest as possible. Adopt a different attitude to all housework and jobs – do the absolute minimum and get as much help as possible from wherever you can.
Hope this helps
Love FizBix xxx
HI FB
Thanks for those lovely words. I totally feel the same. Sometimes i get to a mental, physical low and its so hard to pick yourself up again. Its like i look out the window or hear of people going places, doing things etc., Don’t get me wrong i’m not jelaous of them i just want to carry on living my life and its so hard as you say I ride it out in silence and seeing the kids see me like this hurts.
family all say your almost throught or as my mom come over yesterday and said “are you feeling unwell - ohh your’ll be like this for a day or two” but that bugs me even more because its not just a day or two. I don’t even get over the other dose before i’m pumped up with the next one and it just hammers the body even more.
When I went to the hospital on wed the doc did say i’ve done well as for the last 6 doses there has been no extra week break but he also said my red count was down and if it doesn’t pick up i might need a blood transfusion for the next one. This could also be why i’m feeling low.
Its true as they say the tax really does take it out of you but it is gold star.
Thanks once again for the support.
Love
Sukes
a pleasure my dear! … love FB xxx