Real

[madmik]

Well now it is happening and i feel like I should not be here right now, writing this I mean, but I am and it is real. There, I have said it and I feel better, I think. My 14 year old boy will not talk to me about this and I completely understand, he is a loving and caring son as usual but will not talk about the cancer. My 12 year old is coping well, or is he. I feel so blessed that my boys give hugs and kisses as usual and are making life seem so normal. I have no husband as he walked when the boys were babies, never went looking for anyone and do not have a partner. It has always been just the three of us. I will not leave my boys and will fight to stay whatever is thrown at me. I know one thing for sure and we all have the same goal, we will survive.

[Mishy70]

Hi madmik I understand where your coming from and even into my first of 6 chemo treatments I struggle with it all being real. My girls won't say a lot either (20,19, and 16), my 20 year old comes with me for most of my appointmentts especially to my heomotologist ones as she retains more of what I'm told than I seem to...my mind goes straight into the worst case scenarios , my daughters tend to keep me positive..I've been a single mum for 13 years always the strong one always in control and able to see the positives, right now I don't know. Some days I feel it's not real it's not happening to me, other days I cry because I can not bare the thought of leaving my girls . I'm determined to get through this and be there for my girls I promised them always. I'm pretty angry too over the last week... I don't know the right or wrong here I guess there is none.

[madmik]

Thanks, I am sure you and I will get to the other side of treatment, we have to for our children and ourselves. I know that I will cry some more and that I will be brave some days and not so brave others. I also get angry but everything just goes ahead anyway. I know what you mean about always being the strong one and the one in control, lets just stay as positive as we can. Take care and good luck to you !

[Mishy70]

Good luck to you too xxx and yes we will get there and be fine , I'm trying to see it as a little detour and then back on track for bigger and better things

[madmik]

Well now I am into my 2nd day of treatment, my chemo infusion will finish on the fourth day until the next lot. So far I have been ok although today I felt a little nauseous and could not finish my dinner. I knew it was coming but its hard to know that it will all get a lot worse before it gets better. No more whingeing for now, must take each day as it comes and keep a positive attitude whenever I can. Cheers Madmik

[Mishy70]

Hi madmik I was wondering how things were going for you, I'm glad your coping okay with the treatment pretty much how I felt except I was starving all the time from steroids when I wasn't queeziy ... how long between rounds? I found in the second week I started picking up a bit. I'm in my second round now day 3 mine is 5 days , day 1 intravenous and steroids ,on days 1 2,345 ...day 4 a needle to boost white cell count . Different types chemos effect people differently. I spent day 2 this time in emergency as glands in my neck came up they have no idea why the ultra sound showed soft tissue swelling and saliva gland on one side a bit prominent, I'm thankful it's not nodes...might be a little reaction to chemo they are going to keep me in hosp over night next round to observe me....such a joyful day , hair coming out in clumps and looking like a bullfrog blowing out his neck when lithely do their mating calls hahaha ...a funny site that can be depressing too but I'm hanging on to the fact it's only temporary hair grows back and swelling goes down which it almost has , 2weeks to the day of first round I started losing hair. On more positive note I found some lovely knitted caps online and they came yesterday...I think I'll wear head scarf around house though as I get a bit hot and wool tends to irritate scalp , so I'll probably wear a fitted cotton one under those too until hair grows back or scalps less sensitive. So far I've learnt good days are to be savoured and bad days just go with it and let yourself feel what you need to and rest ...I'm trying to be as positive.as I can but gotta stop getting frustrated with myself when I have one of those days... And we are allowed to whinge sometimes aren't we ?...take care and look after yourself I hope you have plenty of support and using the services that are available.

[madmik]

Hi Mishy Sorry to hear you had to go to hospital and that you are having a rough time of it. You are very brave and strong. I have just spent the 5th and 6th day of chemo and not so brave. They took out the infuser and the next two days I was very sick, couldn't get out of bed and needed help with everything. Now I am on the third day without the infuser and feel a little better. I find it hard to eat as my mouth is all chalky and I have a dodgy tummy. Oh well. Drinking lots of meal replacement drink. OK whinge over. I now just continue each day with radiation then the 5th week I go back on the chemo. I am not looking forward to it but it means I am near the end of treatment. How are you now.? We will get through, lets keep strong! madmik

[Mishy70]

I hope your feeling a little better I think the chalky mouth is the worse but I keep rinsing with salt as advised . I hope your tummy has settled now and you can get about better .. I think we are both very brave and strong I guess we have to be, I'm feeling better now but not looking forward to my next lot on the 7th, on a good note my oldest daughter turns 21 on Friday it only seems like yesterday she was born, she's such a good girl, studies hard and works hard I can not wait to see how far she goes in this world of ours, we are having a small family get together for now and will do something special later......my 3 daughters are my strength they believe in me and I think well I raised these girls so how could they be wrong ...keep strong and fight this thing Madmik ..your often in my thoughts xx

[madmik]

Happy Birthday to your daughter, Mishy ! I am sure your family had a great time celebrating. Well, I am nearly halfway through my treatment. Yay! My mouth and lips have gotten much better but of course now the pain in my chest is very intense that even liquid is painful to swallow. Thank goodness there is some relief with pain medication. As my next chemo approaches I am getting rather scared as I know what to expect. My hair has decided to pull away at the slightest touch so for now I try not to push it. How are you going? hope all is well.

[Mishy70]

Hi Madmik thank you she had a nice day her gifts were all very practical which is what she wanted as she lives out of the home and shares with a friend but she is close by which is lovely , it was nice having family around I even had a couple of wines. I will be half way through this Monday as my 3rd round was delayed a week because there were no available beds in hospital so they could monitor me, hopefully I can get one Monday as I don't think it can be delayed longer than 21 days between each one , so I've had an extra week of feeling above average rather than just blah...I'm glad to hear your mouth feels better. It's quite a shock when your hair starts coming out, I did have a few cries when I was alone, but it got too much seeing it all over the place and losing it at the slightest touch that I had my daughter use the clippers on it and cut it back to a 3 , I heard cutting it too close to scalp can be quite uncomfortable, I've bought a couple of warm beanies and my mum made me up a few head scarfs which I wear around home. I wasn't going to get a wig but I might look into it once chemo is done so if I feel well enough to go back to work I don't have to go in bald , I don't want to scare the kids there lol although they would probably think it's cool...I'm just hoping my eyebrows stay. I really hope your doing well and your chest pain has settled down....try and find time to do something that's fun now and then when your up to it and keep smiling ....thinking of you

[madmik]

Hi Glad to hear you all had a great get together, it really helps. I feel so much better than last week. The doctors have given me a strong pain killer so I can eat and stop losing weight. It is working well, I had my first real meal in 2 weeks and it was great. It was hard to have an appetite and not be able to eat.. Well, my hair seems to be doing the same thing as yours. It has got to the point, as you said, that just touching it seems to trigger a huge fallout. I am over finding it everywhere! This morning I pulled out all my cotton scarves and had fun trying different styles. Finally found a style I like and it is very comfortable, not itchy like the beanies. I did a fashion show for my boys who are very supportive, although from the looks on their faces they will need some time to get used to mum's new look. I am now beginning the second half of treatment, same as you, then on Mon 21 they are going to repeat the chemo as well as continue with radiation. They have decided to admit me into hospital for the chemo so they can monitor me closely. Nearly there !!! Cheers

[madmik]

Hi Feeling pretty good and I have had a good week. I am a little nervous about going in tomorrow for my next chemo but happy to be going in to the hospital so they can monitor me. My dad came over today and he used the clippers to cut my remaining wispy hair off. It is a relief to get rid of it but feels funny and I got myself a cotton cap which feels good under the scarves. I think I might also look into getting a wig, they are pretty good nowadays I have heard. You seem to be having more chemo than me, or at least a different type. I hope you are going OK. My family are all going on a holiday once I have recovered a bit from treatment, then the doctors will test me to see if it is all gone. Positive thoughts!!!! Again hope you are doing well, hang in there.

[Mishy70]

Hi there I'm glad to read your feeling good, sorry it's been a while since I have been here....my last two treatments felt like I'd not long felt better then I had the next , I spent 3 days in hosp for both treatments but at least I didn't have huge allergic reactions just a little one in which they decided to administer my chemo over 2 days... Different chemo for different cancers I think...I read that I wouldn't lose my hair until after 2nd treatment but I was losing it a few days before exactly 2 weeks.. Good idea going on a holiday after all this is over you really do deserve it!! I'm just looking forward to a few days fresh sea air and a day or two out on the boat fishing with my dad and my oldest daughter if she can get a few days away from Uni, they are all so busy with their jobs and study ....hopefully I'll be back at work before I know it. I'm currently waiting to have scans at the end of this month and then to see my haematologist , meanwhile lots of praying and positive thoughts. Oh and I'm finally going to go find a wig in the next week or two, have you got one yet? Do you have any advice on buying one? I hope you and your boys are doing well....always sending positive thoughts your way x

[madmik]

Hi I have finally been released from hospital !!! I went in on the commencement of my final chemo and its just as well I did. The chemo really attacked my body and I had a terrible reaction. I was in the ward for a few days and thought I was fine, next thing I was hallucinating and craving water like mad They tied me to the bed in ICU and I was not a pleasant patient, or so I have been told. After 2 months of hell I finally began to come out the other end. I was lucky to make it and the worst was losing my mind a little. I remember the neuro-psychologist asking me to spell simple words backwoods and wondering why. I ended up in rehab and that was great. Like a luxury hotel! I still only weigh 39 kg's and need to do special exercises and eat up. I feel like it has all been a kind of nightmare and I get memories of the hallucinations coming all the time. It has been so long since I posted so I hope you are well, let me know how you are doing. Madmik

[little_stitcher]

I'm so glad you're 'out the other side' of all this. Remember to be gentle with yourself, and know that we're all cheering for you. Sending big gentle hugs. x

[Mishy70]

Oh my gosh I'm so sorry to hear you've had a very rough time with it all I'm so glad you are improving , I have been wondering about you a lot and sending positive thoughts your way. I have finished my treatment they decided to cut it back to four. I had a PET and CT last week and the PET scan is normal no light ups, blood tests are also good apart from still not being completely normal due to chemo but getting there. I have another appointment in a few weeks as my doctor said he is discussing what next with surgeon, hopefully they'll sort it out and I'll be able to get back to normal...if there is such thing as normal after this. I wish I could throw some extra kilos your way to help you out but sadly for both of us it's not possible to share extra kilos... I will however keep positive and send love and hugs your way. How are your boys I hope they are okay and they too have the support they need xxxxx

[madmik]

Hi again I also have an appointment with my surgeon to see if there is any residual cancer and my options if there is. Everyone seems positive that it is all gone so I will just wait and see. Great to hear you are coming out the other side also. Wow, what a journey it has been, and yes, not ever quite over. My boys have been brilliant and are even used to me walking around the house with my bald head. I am now looking forward to going back to work although I will need to build myself up and get more energy. Take care and good luck with everything.!