Sheryl, my chemo us every 3 weeks with a blood test the day before. I'm to have 3 courses of FEC then 3 of doxytaxol then 15 sessions of radiotherapy
. I'm on day 18 of the first course and my hair has really started shedding today despite the cold cap. Gill , my precious , I'm sure you don't look anythingg like Gollum but you made me chuckle .
Ruth, I really feel for you, but don't overdo it let social services do their thing. You'll be no use to your family if you end up back in hospital.
Have finally joined the FB page and it is nice to put aface to a name so will post on there more now. I'll still contribute on here though .
Hope you all manage to enjoy the warm weather . Just about to try some more spinach from my garden, at this rate I'll start to look like Popeye , heh heh heh !x Jan
GMC - Good to hear you are allowed visitors at least, lets hope you get out of there soon.My sister is due home next Monday, so my brothers and I thought we wouldnt disturb her until she arrives home.
Wax2014 - Sorry to hear you are in hospital as well as GMC.I did half expect to be going in myself when they took my bloods and temp yesterday, but all was ok to my surprise, despite eating bugger all and constant toilet problems and my infected scar. I am just lying low at home until everything hopefully picks up once again. Lets hope you get out soon as well. xx ruth xx
Ruth I am so sorry all this is going on in your life right now. How much more is life going to throw at us ? Is there any chance your sister could come home for a bit to help out ? I am finally allowed visitors now my blood count has come up a bit as long as they are "healthy "
Take care and good luck with everything,
What a nightmare. It 's not straightforward all this is it ? Hope you feel better soon
Birthday good wishes and condolences for being in hospital. Hope they allow you visitors
Morning Ladies..Ruth really sorry to hear about your dad, cant be easy not being able to visit him. I'll keep this short as connection is rubbish....had routine onc appoint yesterday and mentioned i had sore throat and was advised to take paracetamol. Did blood test and was escorted to a&e! will be in all weekend on iv antibiotics as my bloods are through the floor. Word to the wise..i had no temp and didnt feel ill..any cold symptoms ask for blood count.. just in case. My next chemo looks like it may be delayed..thought i was doing well. birthday tomorrro and stuck in here..Linda xx
Good to hear you are bearing up well, keep your spirits up.
I now have the added complication of my dad taking a fall and breaking his hip yesterday, so hes been carted off to hospital for an op and will be in for at least two weeks.My mother has alhzeimers so I have been in touch with them to ask for respite care in a home for 2 weeks and waiting to hear back from them. I do have 3 siblings but my sister is in Dubai, one brother doesnt live locally and works long hours in London and my remaining brother has had to take time off work to stay with mum ( I am usually their primary carer ) I have been told my my chemo nurses on no account can I visit dad in a hospital or mum in a car home, which is sad news.
I still have a problems with my number twos and the nurses said they will take a sample on my next session day on Tuesday.....oh joy ! My scar doesnt look any better either.
Lets hope we all sort ourselves out and get through this together 🙂 xx Ruth xx
Internet access dodgy in here and I thought I'd posted on here yesterday but it appears not. Wanted to say a big thanks for all your messages of support which helped no end.
Good luck today Sheryl.
Lorraine and Jan - nearly all hair gone now and look like Gollom
Linda --mirrors lie to me too
Ruth _ glad to hear things on track hopefully and thanks particularly for your kind message.
I will love you and leave you now as believe it or not it has taken over an hour just to write this !
Hi girls sorry to hear that some of you are having problems and hope they are sorted out soon. Have spent the whole day trying to fix my email ac and finally succeeded but lost all my prior ones which is a bit of a nightmare, especially my concert tickets as i cant remember where i got them from lol. Had a stint in A and E dont know why i have a chemo card as they took no notice of it and i lost my cool and growled at the front desk quaoting breach of regulations and PALS, that got them moving and was soon in a nice bed with a drip and bloods being sorted. Had chronic runs yukkk and turned out to be a gastric bug, note to self do not eat sauasge rolls from gregs again!!. Much better today but being careful to not eat anything that will trigger it again.
Gill hope they sort it quick and dont worry we are here to keep your morale up xx
Sheryl Good luck for tomorrow but you will be good
Had my hair chopped yesterday some of you ahve seen it on the fb page but for those that havent i had a hair tattoo and an extremely flat top but look remarkably like a badger all my roots are totally white which theya re not normally. My head was itching terribly and was noticing the fall out so thought id deal with it, also ahve bumps all over my head. Today i am good though and apart from tinny taste im feling fine.
much love to you all
Back from the hospital.They had a look at the portacath scar and took bloods and temperature which were both clear. They agreed scar looks inflamed, but said stick with the anti biotics my gp gave me and also gave me a load of sterile dressings to change each day. So hopefully my 2nd FEC won't ger delayed next tuesday 20th, as I am desperate for my holiday on July 5th not to get cancelled due to delayed treatment.
Ladycroft, I wake up alot at night too eithe rneeding a number two or a wee. My hair isn't shedding ...YET...although I did have a cold cap during my first FEC session...I guess its a case of watch this space on that one.
As Jan says........keep the spirits up girls xx Ruth xx
What can I say Sheryl - I've never laughed so much in my life. Are these real people? They are obviously not sane. By the way why were you searching for "Veet for men" may I ask! x
Sheryl, SOOO Funny ; I'm at work tears running down my face, the girls in the office were wondering what the heck I'm looking at.. I haven't laughed so much in ages...Thank you
I have now printed copies off and distrubted them..waiting for the tears of laughter..it won't be long...
Glad to hear the chemo nurses have finally taken notice Ruth - surely it's part of their/the hospital's service thay they follow up any infection rather than passing you to your GP.
Gill -sending you best wishes for your stay in hosptial x
Finally, Jan - you have the ability to bring a bit of fun to our lives - it felt good to laugh at your post!
I'm on day 16 of my first FEC cycle and my hair is increasingly coming out now and head itchy (and in more delicate places too). I also have a blotchy face with itchy patches. I wonder if drinking more water will help? I tend to drink tea by the bucketload but don't like the taste of plain water.
Best wishes to all, Lorraine x
Poor Ruth , you really have been through the mill. I hope they sort you out and you don't have to stay in.
I was obviously tempting fate yesterday when I mentioned my hair. . Later on as I combed it to go out ,a lot came out and my scalp is tender around the crown today. Oh well if it goes I either become a Sinead O'Connor tribute act for a while or I'll draw rabbits on my bonce...from a distance they'll look like hares ! Boob boom!
Hope the next lot of chemo is easier on you all. I've got mine on Tuesday. Feeling more tired in the mornings lately even though I'm sleeping a bit longer between wees!
Let's hope the nice weather lasts . it's nice to look out at and I might even get to use my awning this weekend
Spirits up gals , that's the ticket !
Well I have finally pushed my chemo nurses into action, I have been told to go to the hospital later this morning, where they will look at my portacath scar and the infection. They did initially tell me to return to my GP but once I said to them that he insisted the hospital should take accountability, they grugingly agreed to take a look...lets hope I don't end up being admitted 😞 xx Ruth xx
Feeling slightly better, but I was given anti biotics on Monday to try and sort out the skin infection around my portacath, so maybe they are doing some good elsewher ein my body as well. Still doing number twos 3/4 times a day despite eating really bland food.
GMC - Sorry to hear of your infection and your stay in hospital, I hope it get resolved soon. I have just made another docs appointment this morning, as my portacath scar looks as though it is getting a bit sore and oozing either end of it. I have an iain rennie nurse coming round this morning as my doc said they are here to help if you are anxious, not just for the terminally ill which is what I initially thought. I am getting frustrated from the lack of after care advice and support form my chemo nurses, it is a private hospital and I feel they just pass the buck onto my gp all the time, but equally he insists they should take accountability for my scar problem as the portacath procedure was done there ! So I feel as though I am stuck between a rock and a hard place !
Please stay positive, I know its difficult when you are in hospital, you can't give in to this yet, we won't let you ! xx Ruth xx
Sorry some of you are not so good.
Thinking of you all and hope you feeling better soon.
Take care Gilly x
Hi again ladies
Apparently my Hickman line is infected. They are trying to treat me without removing it but may not work. Will have to stay in hospital for minimum of 14 days. I know things could be a lot worse but feeling very low and struggling to stay positive. Better all my hair on their floor and not mine maybe ?
Apologies to face book group but can't access it here so will catch up with you in due course.
All the best to you for no more side effect s til next session.
Ruth, Not the best way to lose weight I'm sure .. hopefully it won't last the whole way through; there'd be nothing left of you ... also sounds like youre going through the ringer too with additional familiy problems, it's far from easy, how did you help your eldest with the anxiety issues?
Jan, I agree without this forum I think I would have curled up into a ball and retreated.
Scattyfox, thankyou for the website I'll have a look. Jemma went to school today, but only because she has her GCSE English Lit paper, hopefully when I get home she's had a decent day.
Talking of intimate issues, along with the hair on my head it's now falling out down below and I am wiggling around in my chair like no ones business, very itchy...urgh does it get worse or better?? The hair on my head is coming out in clumps may get hubby just to shave it off ... sounds daft but I'm scared of what I'll look like , I don't think I've accepted the lobsided boob issue yet or the way I now feel about this new person that's emerging.. I'm certainly not ME anymore .. Linda xx
GMC - So sorry to hear that you are in hospital, I hope it gets sorted soon and you get to go home.
Scatty fox - It was my oncologist who advised me to keep away from takeaways and shared public buffets, whether he is just being over zealous I don't know ! I find I am getting very confusing advice from chemo nurses, gp etc regarding what to eat and what to avoid. I am 9 days into struggling with diahorrhea and currently just eating rich tea biscuits, plain white bread and plain white rice, which is advice I have been given on the helpline by a nurse on this forum. Despite taken imodium like smarties, I am still struggling and lost 16lbs.
Wax2014 - both my daughters have problems. My eldest has an anxiety condition and my youngest following years of bullying at senior schol ( despite our constant intervention) was diagnosed with a mental health condition and had been self harming unbeknown to us for years.she is now at uni and very happy down there,plus the support she gets is marvellous. I do sometimes wonder if there is a connection between severe trauma in your life and cancer, unsupported I know, but battling to support my daughters, plus dealing with aging parents, one with cancer and one with advanced alhzeimers, all of which has happened in the past year, I do wonder if my body has just said 'you know what? Ive had enough as well'.
I am so glad I found this forum and we are able to share things that ordinarily I wouldnt tell people, including the constant bowel movement discussions ! 🙂 I must admit if I am going to battle diahorrhea for the entire chemo period of 6 months I am not looinig forward to it at all, I would say I will be pulling my hair out but I think that won't be an option soon ! xxRuth xx
Sorry to hear that Gill and hope the antibiotics kick in.quick xx Linda there is a website for teenagers as well called rifraf there are details in.the.telling your children macmillan book, it may be useful.for Gemma.xx
Thanks for your lovely notes of support . I have no idea what caused this but have been given loads of info 're diet. No salads , unpeeled fruit, pick and mix , over ripe fruit and veg etc.never knew that before! However they don't know the cause either . Hair shedding everywhere and if I was at home I might be tempte
d to have it shaved off. It must be so hard explaining things to your children. Mine are adults with children of their own but even they struggle and have had days when they were sent home from work. My husband is the only one allowed in here so they have to rely on him to tell them how it is as they say I sugar coat it for them. We do though don't we !
Breakfast is being served now so will sign out. Have a good day everyone _ Isn't this supposed to be our good week ? Good note for me _no washing up, bed making, cooking or housework.
Best wishes to all, Gill x
Hi ladies. Just a quick post before I lose signal. I have been admitted to hospital last night with high temperature. Seems like I have got neutrophils sepsis so a few days here on anti robotics and injections to stimulate white blood cells? Hope all going smoothly for you and good luck for those of you with such tricky problems. I am in isolation with own room and en-suite! Gill x
Thank you ladies for your support, the GP that Jemma is booked in with is the same one who looked after Dad when he was diagnosed and subsequently in his final days. He is aware of my situation as well so hopefully he will be very sympathetic and will understand what she is going through and get her the help she needs without to much bother. If not I will go down the Macmillan route as suggested so at least I have a couple of options now . Unfortunaley her High School's head of year whom we have spoken to on a few occassions is not really helpful, just says she can go to 'room Blah Blah' at break if she feels down, but this is for children with behaviour issues and Jem doesn't feel comfortable about that, so I have to respect her feelings on that one.
I'll pass on the hugs, they've helped me and hopefully she will find comfort in them too... Thank you again xxx
Sorry to hear what your daughter's going through, on top of everything you are coping with it can't be an easy time. Hope you get some counselling sorted for her - I did think schools had access to counsellors but maybe go through Macmillan's like Lucia suggested. Big hugs Lorraine xxx
Morning Ladies, sorry to hear about the bowel problems hope you are coping as best you can, I think I'm getting off lightly with the side effects, although I can understand the windy bit !
It's strange how some of us are told different things, two bits I've picked up on - not having take away's? No one told me ; I had Indian on Friday when my taste buds finally re appeared - oops ! And I also picked up that one of you mentioned not to take paracetamol ? I know it can mask temperature changes but I just took my temperature before, made sure it was OK then took them to cure the headaches.. should I not be doing this either??
My hair is coming out now everytime I touch my head and although you know it's coming it's quite upsetting.. my poor 14 year old daughther has completely fallen apart this morning, admitted she's not coping at all. She had anxiety problems at middle school before I was diagnosed and we thought we'd nipped it in the bud, but these have come back in the last few weeks three fold , then this morning she refused to go to school and it all came flooding out , not coping with my dx and with losing grandad she was very close to him. I have now made an appointment with the GP to see if we can get her councelling , may well need to join her.
Having a down day, but the girls at work are really understanding and this forum is a real help too.
Thank you for listening to my rambles... Linda xx
Thank you all for listening to me whinging.
gmc, Yes agreed I don't think I need movicol lol.I ate rice and chicken last night..first food for 2 days.Had a restless night due to period still going strong but no diahorrhea until 7am this morning.So just eaten two pieces of plain toast with nothing on it,plus 2 imodium.I will ring oncologist tomorrow if it doesn't settle today and ask his advice.
Scatty fox , I was told not to eat any takeaways by my oncologist before my FEC started, but I must admit I don't have any appetite for food at all, I have lost 15 pounds to date, I am also usually quite windy but darent incase I need the loo !
Sodastream - I am taking the antibiotics, but will not know whether its them or the food I have eaten causing the diahorrhea. Glad to see you remain out of hospital. I do wonder if I am going to be in a fit state for my 2nd FEC on May 20th.I am sincerely hoping it isnt the chemo that has caused this but food that didnt agree with me 🙂 take car eall xx Ruth xx
The Movicol softens everything up so I'd say it's the very last thing you could do with right now! Your Drs appt seems to have had mixed blessings and I have to say anti-biotics have the opposite effect on me so could work in your favour. Who would have thought a few weeks ago we'd be discussing our intimate bowel habits! seems a good idea to go down the Oncologist route.
Hope everyone else is coping ok and getting some strength back for the next session.
Love Gill x
I have a skin infection around my portacath scar, so I have been giving anti-biotics, which wait for it.....can give me diahorrhea ! When I said I would rather NOT take them, the doc said I had no choice. He hasn't given me anything to combat the diahorrhea which is rather disappointing.
Thanks for explaining fissure, I guess I could have googled it 🙂 I think I definitely have one too, but doc couldn't look as I still have my period. What is movicol> does that help you go to the toilet ??
However, my gp said I should ring my oncologist and ask for his support over the diahorrhea if it continues rather than the chemo nurses. He said its likely I will get this with every FEC, hes not convinced the family buffet caused it? But I was doing ok up until that point.
My theme tune is 'Always look on the bright side of life' ! dee dum...good old monty python.
I hope everyone else her eis fairing okay? xx Ruth xx
Hi Ruth - a fissure is a tear.I'm getting so used to all these medical terms they're just tripping off the tongue - rather sad! It can be caused by the pressure of either constipation or diahorrhea. It heals itself after a while usually but can open up again each bowel movement so I am now taking shed loads of movicol !
Really hope you get a result from your Dr. I think it's a great pity your chemo nurse said what she did. Surely now more than ever we need reassurance and help. It's not as though it was a trivial matter you called over. I received a survey today from my hospital asking me to comment on my cancer care/treatment. I phoned up and said I would do that but only at the end of my treatment, which by my guess will be dec/jan.
Let us know how you get on,Gill X
GMC excuse my ignorance what is a fissure? I ask because my botty got to the stage where it was spasming with the diahorrhea and I think I may have done some damage down there. Yes I am a bit twitchy about visitng local docs incase of germs, I think I may have an infection around my portacath too, so my doc will have to be ready with my list of woes 🙂
Climbing Rose, I have to say I havent found my chemo nurses very helpful with all this going on. I have rung them 4/5 times over past week to say that I felt the diahorrhea needed something more forceful meds wise and they just kept telling me to take imodium and ride the storm. I also got told I had won th eprize for the most calls, so I feel as though I cannot ring them for help anymore. They were great during FEC session but not so good with the follow up care and advice.
Lets hope our 2nd FEC session are not as bad girls, I know I couldn't cope with these periods and diahorrhea every single time, I cannot leave the house incase I need the toilet quickly. xx Ruth xx
Hello, Just thought I'd let you know I've been to the 'wiggy place' it wasn't so bad but very surreal, slightly dawning on me that it's now happening , if that makes sence. The lady was quite pushy but knew what she was talking about and managed to get one as near as 'me' as she could. It's now on order and once she's made a few adjustments off we go !!! which won't be too soon as my hair is starting to give way at the roots when I run my hand through it.
Hope you are all running on full batteries soon.. Gentle Hugsxx Linda xx
Morning girls, so sorry to hear some of you are having such a rough time of it. Let's hope week 3 brings some relief to you xx
Poor you Ruth - what a miserable time of it.
I can commiserate as I have had a bad weekend too. All the worst side effects from the chemo have virtually gone but (and I hope this isn't too much info!) I have an **bleep** fissure that has opened up again following constipation with all the meds.I'm so careful to drink loads and eat healthily but of course I couldn't to start with when first had chemo and the damage was done!. It's causing me agony as the rectum goes into spasm for hours . Have been losing loads of hair and hickman line has turned brown/yellow. Just made a wally of myself phoning the chemo nurse for advise re pain control & line colour and promptly burst into tears.She was very sweet about it though. At least I don't have a period to contend with as well!
Sorry, not coping very well today but at least I know what pain killers to take now.
Good luck at the Drs, Ruth , - hope they can put you in a seperate room whilst you wait so you don't pick up any germs!
Onwards and upwards !
So sorry you're having such a bad time of it Ruth. Hopefully today you can get some help from the Chemo nurses - maybe you can get something for the diahorrea from them or try diarolyte sachets if they say it's ok to take them.
I'm on day 13 of FEC - more than normal strands of my hair came out this morning, but not noticeable yet. I'm, off for haircut/wig fitting this morning so will be prepared. The other thing I noticed is I've got spots/red bumps on my face and scalp over the past few days, which are a bit itchy but not all the time.
Best wishes, Lorraine x
You are more than welcome to give our helpline team a ring and have a chat with one of the nurses there. Lines open at 9am today until 5pm, calls are free 0808 800 6000
Well, started the weekend off well, period over and feeling ok after eating, then all hell broke loose Saturday evening.Diahorrhea back with a vengeance and all I ate was bread /potato and steak ! I hadn't eaten all day friday to see if that would kick it into touch.
I had a bad night sat, then my period has begun all over again. I didn't eat all day sunday and I am seeing my gp today at 4.30 to see what he can do for me. My hubby rang the chemo nurses sunday and they said to contact nhs111, which we did at midday and we never got a return call !
So feeling a bit light headed and weak, I presume due to lack of food now. My next FEC is on 20th and I do wonder if I will be allowed to go ahead.I hope I don't get this reaction every FEC i must say !
Hope everyone else coping better than I appear to be !!!! xx Ruth xx