Just starting treatment and struggling

Hi Hannah, so sorry about your diagnosis ,you've really not had much time to get your head round this. I was lucky mine was at early stage I don't know much about this site Ive only just joined today, but I have found out that there are also other areas you can reach out too, that include people whose cancer is more advanced and having chemo like yourself, they maybe able to better understand how you're feeling right now. Also on the expert part you can message one of the nurses who will reply quite quickly and maybe able to advise you on how to deal with the sickness. Do you have any hospice's near you? There not just for people who are at end of life they can help people who are just starting this journey like yourself. I have found out today that we all seem to have trouble managing our emotions regardless of what stage we are at. It has helped me by hearing other people on the forum talk about it even though Im still not sure how Im going to manage mine. I wish you all the best with your journey Sue20

Thanks Sue20 - it has helped reading through some of the threads here. I just need to calm down. I keep thinking about the 5 stages of grief and how to move through them. 

Hi , 

Glad you reached out to the forum . Even as a carer I was so taken aback about my mum’s diagnosis that was a complete surprise, completed a bowel screen and was totally asymptomatic. To hear she had a significant spread which was inoperable took the feet away from me . You can click on my user name to read her full story . However I quickly contacted my GP . I realised it was a time in life where I needed to look out for my mental health . I was awash with anxiety. I am so glad I did . If you ever want to chat through any aspect of that our helpline staff would be more than willing . 0808 808 0000. 

Getting your support structure in place to deal with the mental and physical aspects really helped . I think you have every right to not feel positive at this stage with a difficult diagnosis. 

What helped us was a former patient told me to “keep our heads where our bodies where” not to let our minds go to constant negative outcomes .That took a lot of practice and with time it started to work . But we kept it real too. 
Her team worked with her side effects and it gradually got more manageable. It was also encouraging to read of people who were treating a stage 4 diagnosis as a chronic condition.

Chemo turned out to be pretty powerful as a stand alone treatment for her and opened up other options . A better balance developed,  better treatment and living life . It came as a surprise to us but we became quite proficient at compartmentalising her time at hospital and her home time and slowly days started to creep in that were not surrounding cancer . Just normal days , then weeks and months . But it took time for the raw emotions to settle . 
For the first time in 11 years she has gone onto yearly scans . 

I lot of people refer to a stage 4 diagnosis being a marathon, not a sprint . It is also very positive that your general health is so good . My mum was the same . 

Anyway others here express the exact same emotions and also report it settling a bit .

My mum was also told that they would try and maintain her . I think they have done a fine job at good scanning , sound clinical judgements , flexible decisions and a lot of compassion. Hospital I think will always be part of her life and her CEA is checked by her GP.

You can also chat this aspect of your health through with your team . They will have some suggestions too .

Take special care ,

Court 

hi Hannah

I wanted to say that I know how you feel. I went to my gp in January, was referred in Feb and diagnoised in April with bowel Cancel with Mets to the liver. I am 54, a horse rider, run my own horse livery yard and have active rural life. I was reeling and actually felt that I would be dead the next day after the phone call from the oncologist. I get into some very dark places, have had to make huge lifestyle changes, have been deserted by friends and right now have no idea of the outcome of the first Chemo rounds. I have had my review scans and follow up is Wednesday,. I had 15 mins in May with my oncologist who basically said the liver met was non operable at present , the plan is resection but that would depend on the chemo and I was plumged into a 12 week course of Folfox. The first cycle was so bad I actually thought I was going to die..the side effects the naseau and feeling of being totally and utterly alone. However if did improve , they altered the drug level and although Ive had a rough time with sepsis, blood clots, chest infection you name it I finally finished cycle 6 about a month late last week. I havent found much support via the macmillan or hospital, I think covid makes it a lonely place and tbh they cant tell me what the prognosos is so apart from helping with the side effects and suggestions as to how I can manage them its been pretty much just me. I dont think I thought it would be so hard emotionally, Im a typical tough horsey woman but my god its been hell. I have days when I can see the wood for the treesand if someone asked me to describe my mental state in 1 one  it would be scared!. I hope you start to feel better and can manage the chemo rounds, I cant offer any magic suggestions, my best friends and husband have to cope with my  melt downs as best they can.. My treatment has made me gain over a stone and a half and even that is making me so depressed.  Sorry Its a ramble but if you need to message me then do I really understand the shock and how you can be so ill yet be so well ,,the irony eh!! Alex

oh Alex - how lovely to hear from you and know there is someone else who feels the same!!! Even that has helped no end. It's the shock isn't it - a normal active life and then boom - you are transported into a living hell where cancer takes over your life. The lack of control has been the most difficult part and I am trying slowly to take back what I can. I was really sick with my first round of chemo but have just had my second and they gave me really good anti-nausea medication so that has helped my mood. I've also decided to try and see people more as, otherwise, it's just me and my partner and he said to me last night that we never laugh anymore and he has a point. It's so hard for him as his mood depends on mine - as you said they just have to cope as best they can. It would be great to message and keep in touch. Oh the irony indeed!!!!!

Hannah x

Thanks so much Court - that's really helpful and I will take a look. I am feeling more positive after my last chemo this weekend as they sorted out the anti-nausea medication so I have been able to function. Last time I was so sick it was hard for the whole weekend (I have the 3 chemo treatment with the slow pump for 48 hrs at home). I have decided that I need to live my life as I don't know how long I have, use my friends and family as they are really supportive, take control where I can and have little aims - planning to visit family from a safe distance later this week. Fingers crossed for that one. I also know I am not a statistic (they don't bear looking at) and this is my journey - it's scary as I don't know where it will end but I need to enjoy what I can. I know I will have dark days again but I am hoping I will cope better and just accept them when they happen. When I found the online community I couldn't lift myself out of it but it did help reading everyone's stories and realising I am not the only one. 

Hannah x

hi hannah

It definately helps to know your not alone. I too was really ill the first round and then with improved nasea meds things have got better and more bearable. By round 3 they had it sorted and I was starting to know the routine. Ive suffered with white cell issues and just be careful meeting people as your immune compromised so try to do it in the open and be mindful to ask people if they are feeling unwell at all  to avoid coming to see you. The reality is covid is dangerous but so is a cold or norovirus etc..what makes normal people unwell ends you in hospital.  Yes take control and dont let others take over is my advise, friends mean well but the constant of people telling you 'oh your probably better not doing x ..etc . I remind them im a grown up, I know the risks, Im not dumb but this is my life as it is and it might be all I get so Im not going to sit inside when im well (as you discover chemo grounds you often enough) . The worse side effect I found hard is the fatigue and weight gain..and for me the delays in cycles because of non foreseen things like a chest infection and blood clots. I have found it hard with it all on the phone but I get to see the oncology team Wednesday when I get my review of scans, treatment and hopefully a plan to go forward ,  How many rounds are you having of Chemo? is it Folfox? ...good luck and ping a note on here if you ever need to vent or just moan ...p

I have 5 rounds of folfoxiri and then they are going to scan me and see how I have responded. My chemo has been so much better this time but I have struggled to sleep (think my body is just so messed up by it all). Woke up this morning and have been tearful all day. Not helped when I washed my hair and a load of it fell out but tomorrow is another day and hopefully I will be brighter. 

good luck tomorrow xxx

hiya ive sent  you a message with my email if you ever want to message me as I dont always check these ones :)

I dont know your drug regime but my oncologist said folfox wouldnt loose my hair and I havent but its very thin (my hair is sadly fine anyway) so I look like ken dodd on a bad day when I get up..I find is gone very odd in texture and gets greasy very very quickly..sleep in the early days was a big issue as you have so much on your mind..a friend gave me some Pukka herbal tea called relax which has hemp in , my husband calls is my canabis tea lol but its nothing like that ..I do find a cup of that before I got to bed (I put honey in it) definately helps to take the edge of my brain whirring all the time..its I think perfectly normal to have tearful days, I considered myself a strong horsey woman but this has seriously upset my mental health, I cry over nothing, get paranoid about things and the way friends behave etc . Talk to your oncology nurse they are very helpful, the anti sickness meds are often steriod based and steriods muck your emotions and you can have steroid crashes when they leave your system. My emotiion are mostly all over the place and my husband has learnt when I cant stop the anger/panic and it does ease. hopefully you will have the second week after chemo when you feel better, I try to do more then and if I get delayed and cant have it for a 3 week gap I try to treat the extra week as my bonus and do a bit more normal stuff. As I say have pinged my email, I really do understand where you are as im a few weeks in front of you and im still mostly in denial...take care and make sure you look after you,.pamper bath ,time with a book or audible as I found my eyesight is shot to pieces due to the drugs ..or sitting outside with a friend for coffee... better times will come as the queen likes to say ..and they will  x

hi hannah how are you doing? been thinking of you and just wanted to see how your getting on with treatment now? x