[AliParticipant]

Hi everyone

My Mum goes shortly to have a Hickman line fitted in preparation for SCT. Could anyone share their experience with me? We were told she would be an inpatient for 24 – 48 hours. They fit the line and then what? (its been so long since we saw the prof we are a bit hazy on the details). How can she expect to feel afterwards?

Any info and advice will be gratefully received

Thanks Alison x

[DizzylizParticipant]

Hello Alison,

Just seen your post I'm a carer for my hubby kev we also attend Nottingham and see prof Russell ,
When kev had his Hickman line he was only there for the morning starting on the daycase and taken down to X-ray where they do the procedure and then back to the unit where after an hour or so were able to return home, the staff were very good at explaining what to expect and what to do next . All kev can remember is it was uncomfortable at the time and it made things a lot easier when it came to bloods and everything they need a line for, so hope that helps a little and hope it goes well for your mum.

Love liz & kev xx

[DaiCroParticipant]

Hi Ali,

I'm also a Nottingham patient… my line was fitted in the Radiology Department and it took about 45 minutes in total.

I went to the DayCase Unit where I was talked through the procedure and made ready. I was then transported up to the radiology dept., where I had a 15 minute wait. The actual procedure, including local anaesthetic, included quite a bit of tugging and pulling but no pain as such.

It was a tad uncomfortable and you had to stay in one position but there were three nurses in attendance as well as the Doctor. The Doctor worked from behind me (with me on my side facing away) but one nurse stayed on my side (literally) and talked me through the procedure… telling me at what stage we were in the procedure and what the Doctor was about to do next.8-)

It was over quite quickly as I recall and after a five minute wait in the ante-room I was collected and taken back down to the DayCase. They kept me in the DayCase for about an hour and then I was let home.:-)

Mind you… I was back at the hospital with a temperature five hours later… but that's another story.:-D

Dai.

[andygParticipant]

Hi Ali

When I had my Hickman line fitted it took approximately 30 mins start to finish. The longest part was waiting for a x-ray afterwards to unsure it was in the correct place. Mine was fitted at the day unit.

Andy

[AliParticipant]

Morning guys

Thankyou for your replies.

I wonder if I got it wrong then? I could have sworn that they said she would have to stay in hospital for 24 – 48 hours. I do hope Mum can come home then as she hates staying in hospital. I have the email address of the Myeloma nurse Lynne so maybe I should contact her, although I dont like to be a bother.

What happens next?

After Mum finished her last RCD in April this seems to have been a long time coming and we have sort of carried on as normal, the rollercoaster is starting again – I dont like rollercoasters and would like to get off!>:-(

Well, better go get ready for work now, hope you all have a good day despite the rainy weather.

Love Alison x

[DaiCroParticipant]

Hi Ali,

You might be mixing up the Hickman Line procedure with the start of the harvesting procedure.

Your Mum will spend at least 24 hours in hospital when she goes in for her chemotherapy 'Wash and Rinse' before starting her GCSF injections which will be followed by her Stem Cell Harvest. I went in at about 2pm in the afternoon, received my chemotherapy 'Wash' about 4pm, followed by the 'Rinse' and was then kept in for approximately 24 hours before being let home.8-)

My Stem Cell Harvest procedure went as follows.

1. Fitting of Hickman Line

2. Chemotherapy 'Wash & Rinse' – preparing the body for the harvest of the Stem Cells.

3. GCSF injections to stimulate cells away from the bone marrow and out into the blood.

4. The harvest of the cels on the Harvest Machine and storage of the cells ready for the Stem Cell Transplant.

So as you can see, the only part of the procedure needing a 24 stay in hospital is No.2… 😐

Hope that is of help.:-)

Dai.

[VickiParticipant]

Hi Alison,

Just wanted to wish your Mum all the best with this next stage. We have an appt to see the specialist nurse on 9th July so not too far behind. Hope all goes well, keep us posted if you can.

Vicki and Colin x:-)

[AliParticipant]

Hi

Thanks Dai for your response

I spoke to Lynne today the specialist nurse (who is so lovely) and she went through the procedure again with me.

Mums going on thurs for Hickman line AND chemotherapy wash n rinse either thurs pm or fri am (hence the stay of 24 – 48 hours) So Mums 1 and 2 procedure is to be at the same time. The only snag is they are very short of beds, so they may only be able to carry out procedure 1 and may have to go back the next week for number 2. I just hope a bed becomes available and she can get another step over and done with. Dai how did you feel after procedure 2? Is the chemotherapy more potent than firstline treatment?

Vicky and Colin, I hope all goes well on 9th, I will keep you informed as I know you are at this stage too.

I cant thank you enough for your advise. I hope everyone is keeping well.

Love Alison x

[DaiCroParticipant]

Hi Ali,

The 'Wash & Rinse' treatment was fine at first but I became nauseous after a couple of hours and was physically sick over a 2 to 3 hour period… after that I felt drained but the anti-sicknes medication (given after the event) worked from thereon in and when I was let out I just felt washed out.:-|

iI was told by the staff that only a few people are actually sick (as against feeling nauseous) so I was unlucky… and to tell the truth I'm not usually a nauseous person.;-)

I'm sure your Mum will be Okay but you might wan to enquire abot anti-sickness medication before the procedure.:-)

Dai.

[AliParticipant]

Morning Dai

Thanks for that. Yes we will ask about anti sickness, Mums fear is the chemotherapy, we were told her hair would become thin after 2 weeks or so. This is all very real now. I just hope there will be a bed for her her on thursday so she can get it over with 🙁 As always she is very brave and knows its just got to be done.

Thanks again Dai

Love Ali x

[ElizellenParticipant]

Hi Ali!

I haven't logged on here for a while but wanted to wish your Mum well – by now I hope she has had her Hickman line fitted with no problems/discomfort and I have my fingers crossed that they do find her a bed so they can do #2 as well before sending her home.

My hair didn't start to fall out till I was about to go in to hospital for my stem cell return, and got gradually thinner while in hospital. I remember collecting a brushfull of hair on the day I went in, and small handfuls over the next few weeks. (I had long nearly waist-length hair then which I usually put up into a bun)

By the time I was discharged I still had fairly sparse locks all over which were hard to make look nice, so as soon as I got home I went over the road to our local barber and had him take it all off so I could start again.

I went from slaphead to suedehead beween September and Christmas (I wore my Broche knitted woolly hat for those months) then it got long enough to curl all over the place. Some people find it comes back stronger and curlier and even a different colour, so she has that to look forward to!!

My profile photo shows me about a year post SCT and you can see how it grew back over the year.

Love from
Eliz
XX
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[AliParticipant]

Hi Eliz

Thankyou so much for your kind reply. Yes, Mums had her line fitted and yes, there was a bed so as I type now she has the cyclophosphomide running through the drip. Not too much discomfort, she says she could feel the hugging and tugging. She was abit shaky after she had it done, possibly abit of shock but mainly due to hunger! so once she had crammed a sarnie in her she appeared much better. On the drip for 24 hours so all being well she should be home tucked up in bed this time tomorrow.

Thanks for the info about the hair, the hair loss concerns my Mum so much. After looking at so many she has finally found a wig that shes ok with and has scarves etc. I cant believe how much your hair grew in a year! May I ask you how you are feeling now after your SCT? Mums looking forward to a holiday as she had to cancel a carribean cruise last year – I think she deserves a lovely holiday after all of this.

Dai, Mums on Fletcher ward, the nurses are all really nice and they gave anti sickness BEFORE chemotherapy so I hope she will not get much sickness.

Night everyone – Im bushed x

[HelenParticipant]

Hi Alison
I'm just about 11 months post SCT and have had my first hair cut since loosing mine. I found it quite devastating, wore the wig for a few months but never felt secure in it, dreaded a high wind in case it flew off!:-0 I hope all goes well with your mums transplant,soon it will all be done.
Love Helen

[ElizellenParticipant]

Hi Alison!
Hopefully your Mum is home now.

You asked how I am feeling now – well apart from constant pain in my back due to my several disintegrated vertebrae I am doing OK. I was diagnosed after several months of having a "stiff" back when several vertebrae just collapsed doubling me over with pain as if someone had slashed a sword across my back!

I feel very "well in myself" but because of that darned back I cannot stand for long or walk far if not supported by a stick or frame, so I tend to use one of those wheeled trolleys with a seat on it when walking down to our local Tesco Express for a few bits, or when doing a weekly shop I lean on the shopping trolley once out of the car.

I can scoot along at quite a fast pace when using a trolley or walker as leaning on something tends to stop my back hurting much. When sitting down I just have a small uncomfortable ache, so still can do lots of stuff if it does not including standing!

I too bought a wig before my SCT which was very well matched to my existing hair colour, though quite short,

[IMG]http://www.atkinsdietbulletinboard.com/forums/members/elizellen-albums-signature-graphics-picture2721-wighead.jpg[/IMG]

but I only wore it a couple of times before deciding I was much more comfy wearing a cloche-type hat or bandana or just going bald. Though it did shock me how much I looked like pictures of my Dad!!

[IMG]http://www.atkinsdietbulletinboard.com/forums/members/elizellen-albums-signature-graphics-picture2705-baldavat.jpg[/IMG]

The funny thing I found as it started to grow was how many friends and acquaintances felt the urge to touch it! Particularly blokes of my age or older! (I am over 60) I suppose it is the same for obviously pregnant women, who I have heard often get complete strangers wanting to pat their bulge!

Sending your Mum my best wishes!

Eliz
XX
X

[AliParticipant]

Hi Eliz

Yes Mum is home – hoorah! Tired, but relieved this stage is over. Brave as always! Up this morning making my Dad bacon and eggs!

I have visions of old men coming up to you in the street patting your head! I hope you swatted them away like flies. When I was pregnant the check out lady in Asda said I had the largest bump she had ever seen! – how rude!! (she was probably right though)

What an awful time of it you have had with your back, though im glad it doesnt stop you from getting about and it is reassuring to know you feel "well in yourself".

Thankyou for replying to my post – its very much appreciated.

Hope you have a nice weekend

Love Ali x

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