Ideas for your checklist

Hi Elena, 

Celebrate St Nicholas Day on the 6th as your Christmas! It's a good day to try to do that anyway. 

Yes, I'm sure that if you're in, they do ensure that Christmas Day is as good as possible. 

Take a new, soft, toothbrush in with you, it should be OK as you will be rinsing it anyway after each brush! Ask them for a two-part mouthwash that you mix to use, it's brilliant, can't think of the name if I even knew it.....another also is Difflam.....

I think the hospital daughter was in used a type of J cloth as a one-use wash cloth. They will change towels, bed linen etc daily anyway. You'll be using a different liquid 'soap' which they give you. It's also what visitors will be using to wash hands, it's pink......called Hibitane....

A PICC? They gave daughter a Hickman which is through upper part of chest, that was in and out with a local, and ok. She just ensured any clothing was loose-ish or able to be undone round the neck.

You will most likely have a fairly constant drip line attached to something on wheels, so getting changed daily (yes, all sleepwear too, needs daily changes) for showering will become an art, but can be done! Daughter found the hardest was attempting to keep that drip stand relatively dry when in the shower! 

Sending you lots of love and hugs, you will cope and hopefully be back out in record time and be giving help to those following on! 

xxx

Oh, and if you want your own duvet, ensure that you have changes of covers, we bought a new duvet (a double so she could snuggle fully) for daughter, together with a soft pillow and I changed all covers daily for her, helped often by one of the staff as I didn't want to drag anything on the floor! 

They may possible give you a drug to prevent periods if you should begin one, do take it as when counts drop, it will prevent any bleeding. 

Hugs xxx

Hi

The PICC line didn't cause much of a problem with clothes when I had mine. It was in for 9 months and I never had any problems. I think it is just being aware if it so you don't accidently tug it. 

You soon get used to showering with it. I used to wrap some cling film around mine just to try and keep it dry in the shower (I did actually manage to swim with mine but that involved a lot of tape lol).

I took a scrunchy in for the shower and just used a normal (soft) toothbrush with all the mouthwash that the hospital provided. 

Lip balm I just used the Vaseline lip stick style one rather than the sort you hip tourney finger in which did the trick.

I needed up using the hospital pyjamas as I could just change them each day and I wasn't then collecting a huge pile

of washing that then had to be taken back home. To this day I can't  use the deodorant and shower gel a I had in hospital as the smell sends me straight back to the hospital bathroom. Wet wipes and soft toilet roll should be on your list! 

I got out a few days before Xmas when I was in Barts and whilst they had an Xmas tree it didn't feel particularly Christmas in the lead up but it was a multi cultural mixture of patients.

I was in over new year and my family bought in a picnic for me (following the food guidelines when you are neutropenic) which cheered me up no end.

I bought cheap t shirts and track bottoms for my stay and once the treatment had finished I binned them as didn't want to wear my hospital clothes when I was out and recovering.

Good luck. It's a tough few weeks but it means there will be many more Christmas celebrations for you in the future.

Paul

Hi,

Had my hickman line inserted on tuesday.... uncomfortable to say the least, but it was afterwards I was in such pain. They have to go under the collar bone, I couldn't move my arm or open my mouth very wide, to eat a sandwich was hard. Today I feel better with the hickman line, I also had my 4th Biopsy under a general.

Next week got to have a radioactive injection to check my kidneys it lasts for 4 hours . Then on Wednesday have to go to Kings to sign the consent form and more tests ready for admission on the 13th for my transplant.

I'll be happy when this is all over, its getting me down now.

Thanks for reading and understanding

Gin

x 

I bring a little alarm clock that lights up in the dark. As when you have your obs done at 2am , not sure if you're like me, before my clock i had no idea what time it was , and used to lie awake waiting for the 2 am wake up call. Now I just check my clock and go back to sleep if I'm awake too early.

I bring in my own fizzy water. A poster to put on the wall to make it more like home, and not too clinical. I dont bring in books as with chemo brain can't concentrate. facebook on my ipad is usually my life line or tv.

I've packed a few xmas lights I can hang up to cheer me up, as I'll be in over xmas. I always bring in a reed diffuser    , smelly incense. gets rid of hospital smell, and the nurses always comment on how lovely my room smells.

keep strong everyone, and be positive

Gin

x 

Hi Elena 

All the advice is sound if you are going into the acute hospital but if I recall you are having yours at UCLH which is different. Unless they have told you otherwise they will start you in Ambulatory Care & you will stay in the Cotton rooms which has the facilities of a 4 star B&B. You'll have treatment in the day & will be able to go out in the evening if you feel up to it. There are shops, pharmacies, supermarkets & restaurants local to the centre. It's easy to pick up what you need (or have someone else do it for you).

At this point I wouldn't recommend brining in Duvets, bedding and so on. You'll need more street clothes because at a minimum you'll need to walk between the hotel & cancer centre daily. 

It's less isolating than the traditional approach. There's a dining room in the B&B where they serve breakfast and it has a microwave if you want to heat something in the evening. There's also a communal living room. Each bedroom has free TV & Wifi and the hotel has a laundry room for guests. Each room in Ambulatory care also has free TV & wifi. 

You'll continue at Ambulatory care/Cotton Rooms until you get post transplant temperature spikes (if you get them - I didn't), or an infection. Or until you say you cannot manage. Then they'll admit you to the acute hospital & an isolation room. I cannot comment on UCLH's acute facilities as I didn't get admitted. I've heard you have to pay for TV. 

Personally I overpacked & had to send half my stuff back home. During my second Ambulatory admission I took only what I needed for the Cotton rooms but had a second bag packed & ready at home in case I was admitted to the acute hospital.

Hope that helps. 

Dana

PS - it's day 64 and I'm okay. Having my second battle with CMV, blood counts are still wonky & I have a stinking cold. But I'm okay. 

Sorry I'm going to be very rude and ask a few questions before I address everyone and their very kind replies ( question popped in to my mind) 

so.... this laundry business is bothering me a tad..... I have to have a change of absolutely EVERYTHING I WEAR every single day the entire duration or just for the days I am neutropenic? 

due to no southern trains, and therefore limited visitations I shan't be getting a lot laundered.... hmmmmmmm 

I am private at UCLH..... and it certainly isn't a patch on the ambulatory care and its amenities.... perhaps they will let me use their laundry facilities? I shall ask the nurses. 

Nice view of the shard, mind. Can you tell I'm a bit peeved haha xxx 

i might be shattered and slightly annoyed also because we put on Xmas day all weekend for my family and I've only just sat down. Would have been nice to have been waited on! Family hey, 

Hi Elena,

Everyone else close your eyes for a second....

OK,  right, i'll be honest with you - I didn't change absolutely everything every single day. It is basically good advice but there were days I felt so rotten I hardly got out of bed at all, all day. That's why I said to do what feels comfortable for you at the end of the day. There is lots of good advice out there but if you feel like it is too much pressure to follow, just do what you can and what you feel happy with. The only person you have to answer to is yourself.

But also like I said before, I had a fairly rough time post-transplant so maybe I would have done better medically to follow the advice to the letter. And what I am writing now is only advice and not fact as well. 

Just do the best you can with what you have got and know that there are loads of people on here sending you warm wishes and here to help and support you all the way through in whatever way we can.

Wishing you all the very best for the 9th, and beyond, Elena.

Greg

Hi Elena, 

Greg has sound advice! Yes, in an ideal world, change stuff, but it sounds like you won't have an ideal world so do the best you can! 

So sorry you had to do everything over the weekend, you must feel exhausted! 

If all fails then the hospital will have changes of clothing (but it might be gowns!) and of course, bedding and towels......just try to get out of bed for a shower and change each day as often as you can. Think daughter only missed one day when she just felt too rubbish. 

Sending you love and hugs xxx

Hi

While you are neutropenic I would just wear the hospital pyjamas and change them each day for starters. Once the treatment is in full swing and post transplant you probably won't feel like getting out of bed for a while any way and will sleep a lot.

Everything is all about infection risk at this stage. The longer you wear clothes the more chance of them becoming contaminated. 

Before you are neutropenic then dress as you would normally if you feel up to it.

The treatment in the run up to the transplant is intense so you really don't have much time to go anywhere or the energy and post transplant even if you don't pick up an infection (which is quite common) you will be shattered.

We managed with taking a smallish case and plenty of carrier bags. Each time my wife or friends visited I would ask them to take a small bag of washing home for me and it all worked ok. If I got short I would let my wife know and she would brings bits in for me.

I doubt they will let you use the laundary as there will be no way of identifying your clothes.

My wife drove into London in the end rather than the train as it was no more expensive than the train tickets. There was a carp ark near Barts which was £2 an hour so if you could find one near your hospital that isn't too expensive that may be an option.. there is no congestion charge at weekends. 

Sounds like some of your family have no idea how ill you are and as for "friends" who kept saying they would visit... don't get me started.. let's just say you find out who they really are! 

Any questions just ask