[HelenParticipant]

Hi Ali
I wondered how you were getting on. I've just consulted the diary I kept and I dropped my bloods to 0 on day 8 from the chemo, they started to come back on day 13 from the chemo and they let me out at day 16 from chemo. My mouth was like leather from day 4 and stayed like that for about 6 weeks, very dry but not really sore. My main problem was nausea and terrible diarrhoea and abdominal pain which persisted for many months. Just keep going. You are at the worst few days now, so your marathon is over half way now.
Love Helen

[AliParticipant]

Hi Helen

Thanks for your reply, thats just the type of info I hoped for.

So, day 8 after the chemo is today – thursday. I know everyone is different but I like to have a rough idea of when things are likely to happen.

I see you have booked a hol to Venice Helen, how lovely, thats a place I would love to go. We will have to make do with Skegness this year lol. Although I am looking forward to a big family holiday next year when all of this is but a memory……………

Thanks again Helen, take care
Love Ali x

[eveParticipant]

Hi Ali
This is the hard bit,you mum will sleep a lot,take a book to read,if the clothes are soiled just get the nurses to throw them away,this is were your mum will feel if she is loosing control,very emotional for her,the nurses understand,but expect a few tears,you keep your chin up,tell your mum she is through the worst,the nurses should be able to tell you when the neutrophils should start picking up,so you can count the days off.

At this stage even the nurses do not see the point of eating if you are going to throw up,but ice cream seemed to help Slim,plenty of fluid,anything that will go down.cold milk was Slims chosen drink.

Tell your mum we are all wishing her well.Eve

[tomParticipant]

Hi Ali

Your Mum is doing great so far (dunt look like it but Mum is dong well) its still up hill for your Mum but will get easier as the days,weeks flow by.

I needed anti sick tabs for weeks after my SCT just couldn't keep anything steady.

Give your Mum a Hug from me as like most here we have been through it.

Love and hugs

Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Ali,

Like the others tuning in to see how you are all doing. I hope your mum is not feeling too rough, and never mind about having a bad hair day, and not being able to wear any nice head dresses, it's only temporary and like you say this will all be a big blip in 12 months,.

Thinking of you

Vicki and Colin x

[ElizellenParticipant]

Hoping that your Mum is still progressing "as expected", Ali. I imagine her neutrophils are right down by now and possibly starting to edge back up.

Sending you, her and all your family cyberhugs – it will all soon be a distant memory I hope!!

Love
Eliz
XX
X

[AliParticipant]

Hi Everyone

Well, this is day 11. I must say the last couple of days have been a real eye opener for Dad and I. I thought we were prepared……Mums having a tough time of it. Bloods 0 since Friday, platelets 4 as of yesterday. She had 2 bags of platelets last night. Nurses were waiting yesterday for temperature to spike to give antibiotics. (Dad just phoned as I type and temp not spiked overnight) does it always?

Eve, you were right about everything! even down to drinking cold milk!

Mums gone into hibernation mode I think. Keeping her head down and doing her time.

Hopefully things will be on the up in the next couple of days…they are still talking of discharge Tuesday or Wednesday next week, which I find unbelievable!. Once the neutrophils start coming back up does one instantly feel alot better?

My sister in law and I are off to Mums later to give the house a "big clean" just call us Kim and Aggie:-D

Thankyou all for your support – it really means alot.

Take care Ali xx

[VickiParticipant]

Hi Ali,

Wow big surprise if your mum comes out Tuesday or Wednesday, but if they think she up to it…..recovery always best at home. When Colin had an infection once his neutrophils were 0.4 and he was still allowed to stay at home. We were just careful with cooking food well, washing salads or giving the salad a miss, no soft cheeses etc.

Sometimes you can feel very helpless just watching, I know I have done. We very much hope your mum is on the up in blood, outlook and long may this mm thing stay in remission!

Vicki and Colin x

[eveParticipant]

Hi Ali

To me this is were the hard work begins,your mum is going to feel great about coming out,and if she is not careful will over do it.This is were she needs looking after,I found it easy to do a bit of a chart,she will be coming out with lots of tablets to take at different times,plus she needs food and drink put in front of her,does not matter if she does not want it,important she eats and drinks.A little and often.
Do not be surprised if your mum does not make a speedy recovery,some like Slim need bloods and platelets,also Slim was hospitalised twice,If you are not expecting it,it is a bit of a shock,with a bit of luck your mum will not need anything.

Ali Slim is over 2 months out of hospital,and is making a very slow recovery,Helen was cooking straight from coming out,everyone is different,I expected Slim to recover fast but he did not.
What they do not tell you is,because your body is at an all time low,other ailments seem to surface,aches and pains,this is part of the slow recovery in Slims case.

Last but not least I kept people away the first few weeks,Slim went out,but again,when not many people were around,the last thing you need is your mum to catch anything from someone else.Love Eve

[HelenParticipant]

Hi Ali
I came home on day 16 after the chemo, 14 after the cell return, And yes you do feel suddenly better once the new cells begin to get a grip. It is better to be at home too, my lovely husband kept the house clean by damp dusting with furniture wipes and disinfectant wipes every day, especially door handles and taps, clean towels and bedding every day for the first couple of weeks and very few visitors, all kept at least 5 feet away from me, no kissing, which was hard. I did what I felt like doing, then rested in between. Woe betide anyone who got in my way! It was my way or no way, it's a very emotional time too, the bulk of the treatment is over and though you feel shot, you can't quite believe you are out the other side. You keep expecting disaster to strike and it's emotionally draining. Don't infantilise her unless that is what she wants, I did not want a fuss, just my own way, and space to be quiet, i was back to cooking all meals at the end of the first week, still not cleaning much now i know other people can do it;-) I needed to escape people after quite short times really, there is only so much you can burden people with. The worst visitors were the ones who came to see me for hours and ignored my husband, the best brought dinner, sat with me for 10 minutes then ate the dinner and had a beer with my husband! 🙂
I know you are worried but just relax and let her recover at her own pace.
Chin up
Love Helen

[DaiCroParticipant]

Hi Ali,

Superb advice already, especially from Eve and Helen.:-D 😎 🙂

All I would add is to make sure you take your breaks away from caring, away from the house. Janet does,nt like to leave me on my own but at the start I insisted and now she enjoys her mornings, afternoons, days breaks with Kirstin our daughter and the grandchildren. 😎

It is so important to have your own time and as the MMer I enjoy the fact that Janet is relaxing away from me and I revel in my own space and silence too.;-)

I know its early days for your Mum to be left to her own devices but it doesn't have to be you who is there to care at all times.:-)

Dai.

[AliParticipant]

Dear All

Just a quickie tonight.

Had a much better visit today. Mum was brighter, did not sleep in the time that Dad and I were there and we could hold a conversation. She,d been nibbling at a homemade cake id sent in and we came away feeling better than we have done in days:-)

D&V not stopped but a little better,she still feels nauseous.

More platelets tonight, neutrophils 0.1, maybe thats why she making a little progress.

A much happier Alison signing out xx

[EttaParticipant]

Hi Ali I have been reading your posts and that sounds good news about your mum.
I get my line put in tomorrow and go in to blackpool vic on Monday so your posts have given me an idea of what to expect.
I hope all future visit are good
Love and best wishes to you all Etta x

[tomParticipant]

Hi Ali and Mum

See it gets better 😀 I was told that they would make me sick before they made me better and they did on both counts, and your Mum will be the same.

Give Mum a Hug from me

Love and Hugs to you all

Tom "Onwards and Upwards" xxx

Etta Good Luck with your Line Tomorrow and Hugs sent your way also xxx

[HelenParticipant]

Hi Ali
Seems she's on the up now, Don't let the side effects worry you, she just has to tell them when she goes to clinic that they are still there, ( or have gone) I was nauseous with the dreadeful Diarrhoea for months. It's still not gone away completely but is more associated with the revlimid cycle now. Your mum appears to be the same age as me I notice. Let's hope we are discussing this for years to come.:-)
Love Helen

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