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Possible leaukaemia - anyone can share experiences?

106 replies

hazlinh · 25/12/2009 16:27

DD, 5, who has been sick for about a month (I think I've posted a few threads over the past few weeks) was admitted to hospital today for low blood count. Her red blood cells and platelets were "abnormally low" and she needed to have a platelet transfusion.

Paed says it is likely to be leaukaemia, and did repeat blood tests to make sure the blood counts were not wrong.

He also did a blood film test which he says will confirm whether it is leaukaemia or not. The only problem is that the haemotologist is on leave, understandably, so paed is trying to contact him now.

And a blood marrow test on Monday would be 101 per cent confirmation. Am in shock, and it's all a bit surreal, and I don't know what to think, or expect or anything.

If it is really leukaemia, and paed says he hopes it is not, but he said to brace for the fact that it could be, he was optimistic, and said that nowadays there is a 90 per cent survival rate. But that treatments will last 1 to 1 and a half years and our lives will be changed. He didn't really elaborate but he said DD would need her blood taken 2-3 times a week and they normally just leave a line on her so they don't poke her all the time. She would also probably skip a lot of school over the next year or two. One of us would also probably need to give up our jobs. Me and DH are seriously in shock and if there's anyone out there who's had experiences with leukaemia, I'd be extremely grateful if you could share them with me.

OP posts:
woodhj · 30/12/2009 15:02

DD has GA but is under for only half an hour and came around really well first time. They just told me they give them GA so not to cause stress they also give Vincristine and anything else while under if due.

DD has had one blood transfusion but only because counts were low so was used as a top up not as any sort of treatment.

For the first month its every week and then become every about three. They told me its hard to see all the cells through blood and this gives a more clear analysis.

Have they been taking blood from thumb? dd hates it as her thumb throbs, they then give us quite quickly her blood counts on 4 different areas and have told me which is the most important and what indicates when she is more prone to infection.

She also hates taking meds we really struggled as they were giving us it in liquid form. When they realised she was spitting it out and refusing to have they gave me it in tablet which i crush and hide in her cereal or yohgurt, she does not even realise she is having it now.

We are back tomoro for the night for the bone marrow etc and vincristine, the hospital said you usually come in at 8am and leave by just after lunch the kids get use to it and some dont want to leave. We are staying in just so they can keep an eye on her with it all being new.

hazlinh · 30/12/2009 15:29

tackychristmastree, thanks for the tips and the thoughts...the dvd player is a really good one! we had one, but it's almost a year old, and been bashed about quite a bit as we travel everywhere with it, so unfortunately it died on the first day DD was hospitalised. luckily sil bought her a new one and she's most pleased. it really does come in handy. will definitely check out the ipod idea too, and the audible.co.uk. never heard of it before, it sounds good! friends n family have also been most kind, and we have a whole mini skip full of reading/colouring books and bits and pieces...

woodhj, it was near impossible for us to get dd to take any medicines orally previously. the only thing she ever used to take voluntarily was phenergan. i always had to use suppositories or hide nurofen in her milk, everytime she had a temp when she was younger. it was the same for us this time, and when i was told she wd need to take medication apart fr chemo, i thought that was it, no hope for us. but the nurses were extremely supportive, and a whole team of them helped her through her first time taking the two syrups, and what we did was we diluted the two syrups in maybe 10mls of her favourite juice (she doesnt drink anything much apart fr milk, water and some types of juice) and got her to sip it through a straw slowly, volutnarily. she hates being forcefed and would just spit everything out. we had to repeat the doses a couple of times in the beginning cos she either spat it out or was sick after, but now we're slowly making it a routine, and i think she's slowly accepted it.

they've been taking blood from her arm, which she hates, but the results do come quite quickly too, let's say the blood was taken at 8am, it'll be out before lunch i think. they haven't really told me which is most important, or maybe i haven't been focusing very well her platelets were 33 i think this morning? when she was first diagnosed on christmas day it was 9 and then dropped to 8 the next day. her red cells are low too, and she's just had a transfusion today. in fact, we only found out she had leukaemia, because sil who is trained as a doc but doesn't practice anymore, said she was shocked to see her looking so pale on christmas day, and that's when dd was rushed to A&E. other than that, she seemed her usual self, apart fr having temps on and off for a month, which the paed put down to her swollen lymph nodes. the paed at a&e was a bit shocked that our normal paed had missed the leukaemia, cos i'd seen our paed 3 times over the past month due to the swollen lymph nodes, and her fever not going away...

the chemo is also done by daycare here, in in the morning and out a couple of hours later. am a bit anxious about the chemo, but i suppose you're right, will be relieved once it's started...

anyway am glad ur started on treatment, and dd is happily taking her meds hang in there..

OP posts:
tackyChristmastreedelivery · 30/12/2009 15:41

This is the audible preschool page, you don't need to join. You can buy books in the normal way. www.audible.co.uk/aduk/site/audibleSearch/searchResults.jsp?N=1944&Np=-24041&Sc=-35937&Ns=P_Release_ Date|1&BV_UseBVCookie=Yes 369 books, there must be something she would enjoy. If she feels very tired or sicky books can be too much, where as to flaot off to a story is lovely. Good for you too if you are restless and bored or can't sleep in the ward. I never get beyond 5 mins of an Agath Christie, straight to sleep. It's like magic.

It's just so scary how you describe a normal little girl who had a few complaints on and off, and now here you are. You must feel like you are living someone else's life.

Fantastic that you have family support. Look after yourselves, drink loads of water on the hot wards - don't forget to eat. x

Moresproutsplease · 30/12/2009 19:47

Hazlinh - please don't worry about school work at the moment. Once your DD is up and about a bit, contact her school and they will send work for her which can either be done in hospital (most have a visiting teacher and school room) or at home. We were very lucky that our local council provided my daughter with a home teacher who helped tremendously and also tutored her siblings if chickenpox or measles were going round at school. DD was also allowed to go into school after the other children had left to chat to the teacher and borrow books etc.

I'm so glad both you and woodhj have each other for support and to compare up to date treatments, hopefully you won't feel quite so alone.

hackneyzoowithbellson · 30/12/2009 19:54

Hazlinh, sorry to hear your DD's leukemia was confirmed. It must be a terrible shock, but it sounds like you have a lot of support around you. I really hope the treatment goes well and am sending lots of love to your DD and family.
Still waiting for a DX for DS, but at least have the reassurance that bloods/urine/biopsy were mainly negative for cancer markers, so just need to know if tumour is malignant or bengin and waiting to hear from GOSH who have sent off samples to marden for a second op.
Woodhj, sorry to hear you are in the same situation too, sending you and your family lots of love too. DS has had 5 GAs in 8 weeks and its horrible, he seems to bounce back pretty quick though.
Stay positive and you are in my thoughts for the new year x

woodhj · 30/12/2009 21:31

DD also seemed o.k on and off again like you I couldnt really keep temp under control but calpol ect soon brought it down which was really masking the leukaemia.

Thinking back her personality changed she became very clingy to me but i put it down to the baby not being long away. She also wanted to be in bed alot and didnt want to do anything to active.

Besides taking her to the docs for her sickness and high temps i also took her about her knees as she started to walk stiff and said they hurt. They told me growing pains. It was when she became almost transparent and all the veins in her head were purple that i really started to worry.

DD was sicky for about 6 weeks but for days sometimes was fine. Now she has started to pick up i cant understand how i didnt see it, but you sort of forget the cheeky active little girl and cant see past the sickly one. A bit like when you put on weight and no one close around you see's it until someone comments that you havnt seen in a long while.

Well bags packed and ready to leave at 6 in morning, not sure if we will stay in or if DH can stay as well, so will be strange new year but not important really.

Good luck x and thanks for the support x

tackyChristmastreedelivery · 30/12/2009 21:37

Good luck woodhj. Update us when you can. I hope it goes ok.

hazlinh · 01/01/2010 01:21

thanks for the link tacky, will check it out. yes, she was my usual healthy girl one minute and the next she was a leukaemia patient the first couple of days were surreal to say the least

Moresprouts, thanks. My sister informed her teacher and the poor woman cried uncontrollably. She's coming to visit, will discuss options with her...

hackneyzoo, glad to hear most of the markers were negative...

ya woodhj, looking back she had all the signs just like your dd too - the swollen nodes, fever, pains in bones, kept taking naps, not wanting to swim even though she loves swimming, distended belly due to an enlarged liver, and she had a funny red spot on her head a month before being diagnosed, and then towards the end she was very pale - but because the paed was not very concerned about all these, i didn't think anything of it. mum kept telling me to take her for a blood test but i thought it was unnecessary

anyway, you can contact me at [email protected], i'd like to keep comparing notes, if you don't mind, and receive updates on how your dd is doing. Hang in there. I hope both our DDs will be their usual healthy selves by this time next year x

OP posts:
hazlinh · 02/01/2010 01:50

woodhj, hope everything went well...

OP posts:
woodhj · 02/01/2010 07:56

Hi yeh everything is fine, we were in at 8am she had her mini op at 10.15 and on our way home at 2pm.
She was miserable until op as she was starving. Its unfair they have steroids which makes them hungry then have to be nil by mouth before op she just kept saying 'i want breakfast'.
They are really happy with her progress, her counts are really low but will be until the end of this heavy month. The body takes 10-14 days to recover after the more heavy chemo but as she is having injections etc every 4 days it does not have time too.
I have not taken her out anywhere as she is really open to infection. We just play in the house.
We met our community nurse who will be going into her nursery to discuss dd and get a feel to see if they know what to do with cancer children. I am nipping in on Wed to discuss before hand and to arrange for some of her friends to come play.
The social worker is getting in touch next week to help with financial side ie if we are entitled to help. You get help with food as dd is hungry all the time she is craving food i have never fed her before and even trying food she turned her nose up at prevoiusly.
We are coping me and dh have a few disagreements, well bickering its been a big shock to both of us. I naturally did everything for dd before as im quite strong minded and think the best job is the one you have done! he works long ours. i think i am maybe be a bit too controlling and over protective but i dont want her to get an infection caused by us.

let me know how you are and if you have any questions just ask x

saggarmakersbottomknocker · 02/01/2010 10:15

Woodhj - I have no personal experience of leukaemia but do have of holding together a marriage whilst under the extreme pressure of having a seriously ill child. It's very hard because you will both be handling this differently and it's easy to judge the other for not reacting in the same way as you. If that makes sense. I know that dh had difficulty with the emotional side of it all, almost to the point of detachment and I just buried myself in the practicalities and of understanding (in minute detail) everything that was going on. It's like learning a whole new language. Sometimes I just wanted to gather dd up and run away. Anyway - just trying to say - be kind to yourself and each other. Thinking of you and you too hazlinh.

hazlinh · 03/01/2010 16:43

woodhj, glad it all went well

am a bit anxious cos we are only having the 2nd bone marrow done tue, along with first lot of vincristine and asparaginase. it feels like everything moves so slowly here compared to the uk. i'm just worried that it's not too late, or that something will happen in between. and i worry that i won't be able to tell when dd is seriously ill and needs to be taken to hospital. what's worse is that the chemo centre is sooooo far away

we're just still taking the two drugs prednisolone and alupurinol til tues, then we start dexa. the two drugs have really made dd super hungry all the time too, but she just doesn't know what to eat sometimes, she's still a bit picky!! sigh. but yes, she's eating stuff that she normally wouldn't even look at, which is good...

we're recuperating at home at the moment, nothing beats home! but poor dd is bored stiff and begged for some of her friends to come over and play. we have not let her go anywhere either, and we've been very careful, sanitising everything, even the whole house before she came home. i let two of her closest cousins come over just now, but i made sure they were not sickly, and also made them wear masks, just to be sure.

did your doc say your dd could go back to school? mine seemed to suggest that dd would miss a year of school, to avoid germs carried by other kids. dd's principal offered, especially since her school is very small, and easily manageable, but i haven't discussed it with her yet. previously, there have been occasions where dd caught a bug from some sick child whose irresponsible parent had sent them to school anyway . i suppose i should call her really, but i won't be able to bear it if she starts crying on me

i know what you're going through with dh, we bicker all the time too about how to handle it. sometimes he forgets dd has low immunity and thinks she's a normal child, and says i'm being too paranoid about germs and that i should let dd build up immunity to germs! and then we bicker. sigh. anyway glad to hear you're holding up well otherwise..x

thanks saggar...

OP posts:
woodhj · 03/01/2010 19:57

It seems like we are living parallel lives but in different countries.

DD personality wise is very cheeky and seems her old self all but answering back. The doctors told me the steriods will make her misbehave and at times be hyperactive (when she can walk again)

The steriods are now starting to show in her apperance she has little chubby cheeks but i just tell her they are more kissable.

Dont worry about how long its taking in relation to 'is it to late' as they explained to me even if dd had it from birth the treatment would be the same and take as long. But you obviously want this moving as the quicker she starts the quicker it ends.

I also asked the questions about having a cat and cleaning etc. but they explained a normal level of hygiene is all you need. Our dd's are more at risk from their own bacteria on their skin and stomach etc which is unavoidable. She will get a cough and cold which is normal but avoid letting people into the house with one.
I just ask family if they feel well and ask them to wash their hands and put the antibacterial hand rub on.

DD neautrophils (?) are low at the moment they should be .50 for her to go out to supermarket etc but due to the chemo she is .11 so we have taken her out in the car just so we are not in all day.

DD is 3 and a half so at nursery. They have checked she is immune to chicken pox which she is and they say to let her go to nursery if i feel ok with her going. Im going to judge it day by day and will probably take her in for an hour or so. We moved into our area as its the best school in our town so i would really like for her to attend as much as she can but im not going to risk her catching an infection and being in hospital for weeks.

We live 2 hours away from the hospital so i worry alittle about how long it would take us to get there in an emergency. They will send an ambulance if we need which is reassuring. I think tho if i can see she is not herself and her temperature reaches 38.5 then i will be straight at the hospital no question.

DH i think cant see past how she is beahving now which is normal apart from not walking, but i know that we have not seen the worst yet as she has not caught anything. She was ill at the start in personality but her counts were a lot higher than they are now so not prone to infection. The chemo has improved her personality but as her counts are low is now very open to infection. I dont think he understands how it all works.

I try to be more understanding but there are certain things i will not back down on and basic hygiene is one of them. We are due baby in 2 weeks basic hygiene is essential.

well good luck, get on there backs and make sure they monitor her for after every new drug given as you dont want her having a reaction to a new drug x

woodhj · 11/01/2010 07:39

hows things going Hazlinh?

hazlinh · 11/01/2010 10:37

hi woodhj! sorry didn't reply for a while there, was a bit busy once chemo started, plus am in the midst of sorting out work and stuff! hope you and your dd are doing ok, when's your due date again?

we had the second bone marrow on tue, along with vincristine and the spine injection. it took the whole day though because we had to be in around 9am to register, but the doc comes in around 12pm by that time, dd is already starving and crying for food, we started fasting at 5am because the silly nurses at the ward told us to. but the nurses at chemo said next time, we can start at 7am she slept til about 3pm, and the nurses had to monitor her til about 5. we got started on dexa, we have to take it twice daily. we asked for syrup instead of tablets, because i'm not sure if we have the energy to start her taking tablets which she's never ever taken before. nearly a week on, she's still struggling with taking the dex, but hopefully it will get better. she wasn't that weak after the vincristine etc, she could walk, but she was super hungry and ate 4 slices of bread, 2 servings of french fries n ribena. and promptly threw it all up in the car. her lips got really cracked and red/black tho over the next 2-3 days. due to the chemo. we also had a minor scare, when she had blood in her stools yesterday but the doc said not to worry unless she was bleeding continuously, had a fever and/or was vomiting. other than that she seems fine, she's having a pretty good day today, and not complaining about anything! the drugs certainly make her very irritable and she does misbehave a lot.....!

she had the asparaginase injection in her thigh on friday, and didn't seem to have any side-effects either, except she complained she found it a bit painful to swallow but that improved the next day. the nurses said to let her gargle some salt water n we did that.

our routine will be bone marrow/vincristine and intrathecal on tuesdays, and aspa on fridays, for the year. after 36 days, she will go in 4 days a week for 4 weeks for an injection. i'm getting a bit exhausted now, because the chemo centre is an hour away (not as bad as 2 hrs away, i suppose). today i woke up with my head spinning and i was sick for a bit in the toilet. had a short nap and i felt a bit better after.

the leaflets they hand out here say that patients undergoing chemo shouldn't come into contact with animals and their excreta! so we've farmed out all our cats to mum's place. i'm still a bit anal with the sanitising but what you say has certainly reassured me somewhat. the doc has told us to try and lead as normal a life as possible, and she can go to school etc but i won't risk it yet i think. none of the other mums here are risking it. i might want to send her to school after 3 months maybe if she is up to it, and her neutrophils are ok. they're about 7 at the last count dad is a bit concerned that she's not getting any fresh air but i'd rather not take the risk of any infections. doc has said that they don't die of leukaemia but from infections. dh had an uncle in his 40s who passed away 2 or 3 years ago, he had leukaemia and was due to have a bone marrow transplant but he died of a lung infection which proved resistant to antibiotics

i've just noticed that we've not been given the clotrimax drug that your dd's taking. what's it for btw? wondering if i shd ask our doc. oh, after the second bone marrow, he said that dd's bone marrow was improving, and that he expected her to be in remission in 2 more weeks! but that she still needs to continue the treatment for a year, i guess to make sure they kill off all the cancer cells for good...

have been on emergency leave since xmas, but will go back to work monday. have decided to try and work from home, and take tuesdays off, and friday halfday (since the injections only take an hour or so to wait for the doc). if it doesn't work out, i may have to cut more days...or take no-pay leave...

anyway, hang in there and hope your dd is responding well to the chemo and that you're taking care of yourself too. i know, easier said than done eh. x

OP posts:
hazlinh · 11/01/2010 12:25

oh forgot to ask them what happens on bone marrow day, is it ok to skip the morning dose of dexa?

OP posts:
woodhj · 12/01/2010 21:55

Hi im glad to hear dd has started her treatment. We are three weeks in now and i have had a really good day today with dd she was like my little girl again.
The Clotrimax is to protect her liver or kidneys as the steriods have all sorts of side effects. One side effect is constipation (which dd is not suffering with) the other is indigestion which she screamed for a day with until we found a suitable ant acid med from hospital.
She has not been sick or had blood in poo but if your dd is constipated? that might explain it. I give dd a glass of fresh orange a day and usually weatabix but with the steriods she has started craving salty foods.
On bone marrow day (every thursday for 3 weeks then one week off and so on) she is starved from 2.30am and no liquids from 6.30am this is because the first theatre patient goes down at 9.30am I dont give her the dexa until she comes out of theatre she is usually starving so i crush the tablet and hide it in a yohgurt. If your dd is coming out of theatre to late to give her 2nd daily tablet of dexa then i would discuss with nurses as the steriod is very important.
Last Monday dd became whittery again and a little sleepy so i knew her counts were low. we had a review the following day so i took her up to the ward they did bloods and she was low on blood and platlets her neutrophils were 0.07 (the lowest yet) so we stayed in for transfusion and platelets. We had theatre on the thursdy so they said you may as well stay in. DD went down to theatre but when she returned didnt really come round as quick when they checked her temp it was 38.7 so we stayed in another 2 days so the could do some cultures on blood to check she didnt have an infection. She didnt and it was just one of those things maybe a small reaction to GA.
She is really bright at minute and neutrophil were 0.19 on saturday so things are looking up.
DD has Portacath inserted on 21st January we are staying in over night so they can monitor her after surgery they said it takes about 45mins. I am due on 23rd so expecting to go into labour while in sheffield but going prepared.
I am really happy with sheffield and whenin hospital the time flies by, we have our own ensuite room with tv and movies etc. I dont pay forany of dd food its all supplied by demand by the canteen and they have nursery nurses and teachers so they done fall behind. It really is an excellent hospital and i hope you are getting the same treatment.
keep me informed my email is [email protected] if you prefer x

hazlinh · 20/01/2010 09:06

hey there woodhj, or shd i call u hayley

sorry for the delay, been busy, started work (from home) on monday and also been setting up a blog for dd so that friends n family can keep updated. sophie's blog inspired me to do it, but dd,5, is still too young to write it herself, so i'm doing all the writing basically.

dd was constipated for a whole month before she was diagnosed with ALL. the dr gave her duphalac so she got better, plus with all the heavy eating on the steroids, she's been pooing 5 times a day!! very taxing, when I'm trying to work! but today she's suddenly developed a stomach bug and been doing runny poos and was sick at 2am. she doesn't have a fever though, and she's stopped vomiting so the nurses at the hospital said it should be ok.

dd's been craving salty foods too! she loves her chips and she's been eating a lot of that.

have figured out what to do with the dexa on BM days, the dr said to give it to her as soon as she wakes, and then give her the night dose at the usual time...

dd's neutrophils were 7 too when she got diagnosed. but she's made a lot of progress since, and i hope your dd has too. the dr said that he can't see any more cancer cells in her BM sample and that she's well on her way to remission. her blood counts are also ALMOST normal. Not quite normal yet. Except for her neutrophils, they were 52 on Tuesday! Yay! And her platelets were 98. Not quite there yet but an amazing improvement from 8 on Xmas Day. I don't know how she did it the dr also said her cytogenetics results were good, and that she had hyperdiploid leukaemia, or 50 chromosomes. he said patients with hyperdiploid tend to do very well.

Am glad for your dd that she's getting the portacath so quickly! our dr has said we have to wait for a month first, to see how dd responds to chemo, and maybe to avoid any complications. they call it a chemoport here i think.

so far, dd's not had any fevers, so am really happy and relieved. but the other mums here have said that when she starts cyclo (or CPM for short, in february), that's when most kids start developing fevers and their hair starts falling out

the chemo daycare here is ok, but it's more of a ward, and there's 5 beds, though it's never full. but it can get noisy, esp when there's sick babies crying
there's one telly, but we normally watch dvds on dd's player or do books. but when we had to stay the night in the beginning, we got our own ensuite room and telly and disney channel, so it was alright. the nurses in the chemo daycare are brilliant, they're really sweet and helpful, and now whenever i have any questions, i just call them up hope your dd is doing ok x

OP posts:
PixieOnaLeaf · 20/01/2010 15:25

This reply has been deleted

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abride · 20/01/2010 15:39

Nothing useful to add, but just wanted to say you are both in my thoughts: you and your children and families.

keeppositive · 20/01/2010 18:10

woodhj and hazlinh,
Have just read all your threads today, after going on MN for only 2nd or 3rd time in my life. Weird co-incidence.Heart goes out to you both, as have been in the same boat, twice, and know exactly how hard all this is, especially only a few weeks into it all.
DS now aged 12, got ALL when two and half (and DD was only 3 months old). He underwent 3 years of chemo (longer for boys), and then relapsed at 9, so had more chemo for 2 and half years. At 12, he's just come off all the drugs and hoping he'll stay well this time.
Vividly remember those foggy first couple of months when still in shock and had to try and take in and understand names of drugs, dates of treatment, etc etc. Glad you two are talking as that's what I didn't have - someone to share experiences with.
Don't want to sound all preachy but you will get through it and hang on in there. It becomes something you live with and my son has been brave and adaptable as all kids are, and is a more emotionally mature boy because of it.
DH and I agreed later on that the upside in all this is that your priorities totally change (for the better). Both left our jobs, he re-trained and started own biz and I stayed at home and then retrained later on, and now work part time. Also doing some voluntary work for the Anthony Nolan Trust - bone marrow transplant people - very rewarding. Somehow the job thing works itself out.
Didn't know I had such reserves of energy and bravery and developed nerves of steel along the way, which I'm sure you're both finding right now.
You sound like you're coping fantastically well. Good luck, and please CAT me if I can give any moral support as someone who's been down that road. Forgive lack of smileys - am new to all this!

hazlinh · 25/01/2010 03:09

thanks pixie and abride...i guess we sound ok because we have to. we don't really have a choice. i had a bit of a meltdown on friday because an old family friend died of old age. but apart from that, we just have to be strong because our dds need us to be, really, i guess. otherwise they might not make it.

keeppositive, thank you soooo soooo much for sharing. am so sorry to hear your ds had a relapse. i hope he'll be ok after the 2nd round of chemo. must have been horrible for him especially when he's at an age where he can remember and understand it more i thought that if you pass 5 years, you're not really supposed to have a relapse?? i suppose that's not the case then?

OP posts:
lisad123wantsherquoteinDM · 25/01/2010 23:21

Sorry Hazlinh just got back on here and seen your message. Yes of course will be willing to post oversea, just email your address at minx101 at hotmail dot com and I will pop them in the post.

We have another appointment for DH is 2 weeks and they have a huge amount of info in the cancer suite here, do you need me to pick you up anything? They have loads! depressing place but least something to read eh?

Im sorry to hear both your news tbh, very serreal time for both im sure. We are nearly at a year now, and I think it all hit me 6 months in, when dh had gone onto his longterm treatments, so off the intentive chemo and onto daily iyswim, and we had some breathing room.

If there's anything I can do let me know. Tips we were also given were, cough sweets from when being sick hurts your thoart, icecream and ice cubes. Also sod all the small stuff for now, washing will still be there tomorrow BUT when you can, set yourself a new routine, it helps to have control over something and chasos of cancer is bad enough.

Hope you ladies are ok and glad to see your keeping each other strong.

hazlinh · 29/01/2010 07:35

hey lisad, thanks will email you shortly...not much info here, i mean there are a few booklets, and some of the sites eg Macmillan are really good, but am looking for more...

hope your dh is doing better now...

OP posts:
woodhj · 29/01/2010 15:34

Hi everyone thanks for the support and information. DD had her portacath op last Thursday we stayed in for the night and got back home on the Friday. She is doing really well and the portacath has not bothered her. She asked yeasterday if she had something inside her but that was only after seeing the nurse insert Mr Wiggly (direct line) into her chest.
Hazlinh it was far better with portacath no more canulars into the hand or feet and watching them scream as they insert them.

DD is responding well and will hopefully keep to the simplist regime of drugs and less frequent. We started a new drug Mercapurinal or something like that which is oral chemo so have to get gloved up and make shure you dont breath it in etc. but she takes it easy enough.

Still have not had baby, im a week over due and so so ready for the little bugger to come out. DD was 9lb 2oz and i think if this little one stays in any longer it will be a 10lb baby. They have told me if my sweep on Sunday does not work they will induce me Thursday but as this is surgery day for DD there is no way im being induced that day so they are going to organise something else.

Keep taking each day as it come Hazlinh its getting easier for us and i hope it is you x