Hi fairydust,
The eco retreat I went to is like a little hobbit village deep in the woods in north wales. There are cob houses, wooden cabins, composting toilets, and a wood fired hot tub next to a gushing stream. A lake to swim in(I was not brave enough as it was freezing!) and plenty of lovely walks. A couple of friends gave me a lovely crystal healing session. We ate yummy food we cooked together and had stories around the campfire in the roundhouse on an evening. A complete break from technology and the modern world! Very therapeutic. I would definitely recommend getting away for the odd weekend between treatments if you are feeling well. It stops life just being about the chemo rollercoaster.
I hope your employers and colleagues are thoughtful enough to not put pressure on you to stay at work if you feel you need some time off. Fingers crossed. Put the guilt aside and send your manager an email and a doctors note! Once you have done that, the worst is over and you can concentrate on yourself and getting through the coming treatment.
Those of you have worn sea bands as anti sickness how long for each cycle did you wear them? I hate them, they are uncomfortable but I’m scared to take them off. I’m day 4 first cycle. Thanks in advance
Fairydust
You are number one now! Not work! Not your boss! Not your colleagues and that is coming from a boss of 18 years running my own business trying to please my staff, customers and all around me whilst bringing up a baby to 20 on my own with no family around me!
This journey has made me reflect on my life and boy, have I changed!!Im no longer tolerant of peiole moanung about nothing! Ive sacked my date who complained of depression after I told him about my illness! How convenient! Ive sacked a ‘good friend’ who turned my situation into her drama! Ive relented and brought a business partner in so I can step back a bit and to put my trust into someone as big as that is massive! Ive started to think where Im gonna go for short breaks even if alone and holidays when I’m mended! I know many people but I dont like troubling them and if I can do something independently I will, after all I brought my girl up single handedly after her dad left me with debts and paid them all off orherwise no home but now I will accept offers of help, as I cant do this on my own! I walk instead of driving to rhe village! I ve stopped alcohol! Im eating healthily! But most of all I dont care what people say or are saying about me as they are not important to me. I am the important one now and watch out for me!!!You will take the time off and put yourself first. Lots of love???
Still on hospital! No oncologists over the weekend so i am hoping that my bloods will show a further increase in my white cells and the onc says i can go home. They were 2 on Friday and 3.3 on Saturday. Does anyone know what white cel level has to be to carry on with chemo? They didnt take bloods yesterday but have this morning. I have been on oral antibiotics every 8 hours. I had a real ‘feeling sorry for myself moment’ last night. The kids all text me saying ‘love you mum, miss you mum’! Then i had to have a 2nd canulla put in as the first one had been in since friday and they didnt want to take it out before the new one was in. I am like a pin cushion! Apart from that i am good!!! Hope everyone is doing well and ready to face the week xxx
Ali am so sorry you are still an inpatient and hope you get home today and you can look forward to your own bed and comforts I’m not surprised you had a meltdown I think we all would under the circumstances whatever you do don’t be hard on yourself.
Am celebrating my good week with a few days away as well though not as hardcore as a hobbit retreat! I’ve decided if the celebrities can have mini-moons and baby-moons I can have a chemo-moon every round and we are currently in the glorious Scottish mountains and already planning an escape for after round 3
This makes me feel even more guilty workwise as have been off for 4 months now and my colleagues are under particular pressure at the moment but I’ve decided my new ‘job’ is to recover as best I can which includes regular escapes - if people see it as a jolly am not going to put them right that actually I’m still in a lot of constant pain post surgery, and mouth ulcers etc from chemo - sometimes we can be victims of looking really well when the truth is a bit different
Have a good week all, especially those having more chemo, take care and be good to yourselves x
Hope that you get home soon Ali and get to give your youngsters a hug. Thank goodness for messenger I was giving medical advice to my youngest, who has just started uni, at 12:30am. They never stop needing you! Fortunately she is fine this morning just had a dodgy tum last night. She is so conscientious and was worried about having to miss lectures. She wasn’t like that at 16!
Love your username MrsMeow, and the idea of a chemo moon! Hubby has looked at a couple of Airbnb places for just before round 4 at the beginning of December to go somewhere nice and get some Christmas shopping done. No more than 50 miles away but an escape. The infection risk scares me and being somewhere away from the hospital and mobile signal. Our favoured place has very little mobile signal but we would have Wi-fi and I suppose we could make the owner aware of my chemo and ask if we could use landline in emergency. We are both quite risk averse so we will see how things pan out! Lovely idea though
Those of us who have spent years doing our best by and caring for others should not feel in the least bit guilty about looking after number 1 for a change and to everyone, there is nothing more important than your health both physical and mental.
Hi lovelies ages ago I met someone on a drunken night out, she kept saying she felt like she knew me -she didn’t but it turned out she was s psychic (I know someone people don’t believe) who was in fact a friend of my cousins from 30 years previously and reckoned me and my cousin had same auras hence her feeling like she knew me. Well I added her on Facebook and thought no more of it. When I decided to tell people of my diagnosis she was one of the first to contact me again I was sceptical but replied and I am so glad I did . She is part of a local spiritualist group and she arranged my reiki she has popped in at least once a week with a cake to have with a cuppa or just to check I am okay and absolutely no pressure and not wanting anything .
I believe my guardian angel brought us together that drunken night knowing what was in my future.
Ps if you don’t believe in this ‘stuff and nonsense’ as my husband calls it that’s fine but I truly believe things happen for s reason x
SueC
That is so right again! I am so pleasantly surprised at some really supportive people, yet some are nowhere to be seen!
I know theres always people who dont know what to say, but to say something positive and supportive isnt difficult. We should always think before we say anything anyway, so whats the difference?
As for your partner, yes upsetting, disappointing and shocking but hey, who wants to be with a week man when we slend our energy concentrating on ourselves!
Sue C…do you think you could start a thread for us singlies as even though I dont class myself as any different jyst because I’m single and Im sure the ladies wirh partners don’t either, we could probably share advice and tips on coping better when we are on our own? Just a thought?
Ali
Hope you get to go home soon! A normal White bloid cell count is 5000 to 10000 per nicrolite of blood. Less than 3500 is low count! Maybe ask your chemo nurse more. I was rold Manuka Honey, Green Tea, Vitamins C, E, A , Zinc, Tumeric, Carrots, Cailifloer, Sprouts, Avacado, Omega 3, Salmon may help!
Maybe see if any will gelp you for next cycle?
Hi SueW
I do a Psychic nite at work and Ann Knight has had great feedback. Its amazing what she tells people and I often wonder how she knows and does it. She has become a friend now. She has had C 3 times and helps many charities with donations she gets.
Next one is on Nov 1st.xx
Does sound like fate took a hand that night. I believe that things happen for a reason but that’s probably as far as it goes but I am pretty open minded.
I feel so lucky to have a supportive husband. We have been together since our later teens and it’s not always been a bed of roses but he always steps up when needed. It’s our silver wedding anniversary next month and I hope that I will feel well enough to celebrate that properly.
This business is certainly a way of weeding out the wheat from the chaff with relationships! I had a lovely quick message from my closest colleague at work this morning, just touching base and asking if I’d managed to get out in the sun over the weekend. She comes across as a really self centered person which in some ways she is but if you get close to her she is so much more than that. She has been one of my biggest supports through this and in some ways it is impacting on her because she is having to do more to cover for me and has had worries of her own.
ali: so sorry to hear you are still in hospital you poor thing! A normal white cell count (for someone not on chemo) is usually around 4-11. Mine was 2 on day 6 of my first cycle when I was on the acute unit, but that was considered ‘ok’ and I wasn’t offered any antibiotics. I gather you need at least a count of 1 pre chemo for it to be ok for next dose where I live. But sounds like they are being quite cautious with you?
Chaffinch: I wore sea bands for the first time this cycle. I took them off on day 6 but then felt sick again the following morning so put them back in for a couple more days. They didn’t hurt me at all but I was surprised that they left an indentation in my skin - I guess that is the acupressure bit, I have very skinny wrists though (but not a skinny tummy) , so guess they could be uncomfortable on a normal sized wrist.
Fairydust: No, I’m not working and havent done so since just before my mastectomy on first August. Agree totally with others that you need to be signed off (not use your annual leave)- these are exceptional times and your recovery both physical and mental are the most important things. This is a hard call for me - I’m the main breadwinner and we have a vey big mortgage but I’m trying to let that one go and focus on getting better
Single people : my hat goes off to you all…my husband does struggle with all of this, and isn’t a natural carer but I would find this journey even harder without him but agree you need additional support from friends and forums (fora?). CK sounds like you did the right thing re your date by the way! You make me laugh!
Cathy, I like the sound of the hobbit village, can you tell us the name please? Hot tub is very appealing although may need to wait til PICC is out first. I’m impressed that you and Mrs M have been away. Maybe I will do that too once I can breathe properly!
I came home yesterday after the acute oncopogy nurse came and said i was fine to go home and she would have just kept me for observation for 24 hours. My BCN called to see how i was doing this morning so i told her about my hospital stay so she said my treatment will be reviewed now. My white cells were 4 yesterday though. I did have 4 days of iv antibiotics though. Now i am just tired.
JOW did you get low WBC Each time or just with your 1st? Also did you have GCSF injections? Mine was 2 after 7 injections xx
Has anyone else got intense tingling in their finger ends and lips? I’m feeling odd tonight again after a good day, not sure if I’m just over tired. Just worried about neuropathy not sure if that is side effect of FEC or not? I’ve posted this on October thread too just in case anyone thinks that they are seeing double!
Hi everyone,
I’m on tchp so can’t comment on fec side effects, I’m afraid, chaffinch. Hope it settles down - if not do ring your helpline number for advice.
Mrs meow - love the idea of a chemomoon every round! Planning my next one for half term in the Scottish Borders. Hope side effects don’t scupper our plans! I do feel mountains and rivers, nature in general, improves my mood and outlook. Autumn is so beautiful!
Jow- the retreat I went to was cae mabon in north wales.
Ali - glad you have been released. Hoping thing go well for you now till the next round.
I am just waiting to see the oncologist for my review before chemo 3 tomorrow. On the steroids and soooo thirsty and didn’t bring a drink! I’ve been feeling really well this last week so hoping all will go ahead as planned. Lost my armpit hair this week(yet, at last a good side effect!) but my fingernails are looking a bit iffy - the lower quarter is all white rather than just a half moon. Hmmm, really hope that hang on in there!!!
Anyone else suffering with bloated tummy and wind? Trying to eat healthily but the veg really makes me blow up! I look about 4 months pregnant!
Oh well. I’m finally getting used to wearing my wig and feeling less self conscious. It’s not giving me a headache now so that’s a bonus. Being bald at home also feels “normal” now. Loving my new baker boy caps too.
Take care everyone,
Anyone else having chemo this week?
Cx
chaffinch - little bit of lip tingling for me too bit not in fingers.I’ve just had 3rd and last fec today. start new cocktail for next cycle.
booking chemo moon as we chat! yes…This season is the best Cathysid: soul food - totally love it!
hope Ali recovering well.
hugs to you all x xxxooo
jacqui
Chaffinch my feet have been a problem on fec and hands to a lesser extent- feels like have just come in from playing in the snow when small - feet especially in the night get hot and sore. Lips not tingling but this time round are pretty blistery- I have lost the ability to whistle!
Hope round 3 goes well today Cathy - yes you have to make it to the Scottish Borders - I know it like the back of my hand so shout if I can help with travel plans, pharmacies etc. - is half term already in the Borders’ schools so will be nice and quiet in time for your chemo-moon.
Jacqui hope your night has gone well - a great milestone to see the last of fec- mine is next Wed - my bloods on Monday will include having the flu jab - has anyone else had theirs? My BCN says to have it either a few days before or after the chemo but am worried it will floor me - I need physio on the wounds too that day so will feel very sorry for myself
Good luck to all today especially lovely fellow feccers - you are one amazing bunch of ladies x
Thanks chaffinch…an uneventful night…bloody brilliant! steroids had me up since 4.30! hope your hands and feet stop playing up for you. What do they suggest for managing this?
Jacqui well done on having a good night - you have got this fec sorted - am not looking forward to round 3 as 2 was tough- but maybe 3 won’t be too bad
No suggestions for the neuropathy - I think it comes under the symptom bingo of things we have to live with - my eyes are stingy this time randomly too - even though I still have all eyelashes and eyebrows - I actually still have wispy Hair still all over my head - I look like the readybrek advert with a halo haha. Has anyone used Wig tape yet to keep their hair on? Am going to try it but not sure what it will do to my skin
Xx
