@SarahMum great to read your updates and so pleased to hear that Danae is home. Hope you both enjoy this time as it is so well-deserved. We are sending you all good wishes.
Tanya.
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Thanks guys
It is sooooooo lovely being at home together. We are behaving like holidaymakers- heading out on day trips. Mooching around and then eating nice food lol 
. Danae has had cravings for crispy fries and ice cream! (But not at the same time - donāt worry 
)
Danae is starting to get a little worried about having a Hickman line put in . She asked me to post on here to ask anyone for their thoughts on the process and how they got on with a Hickman line? As always, all information, advice and support is much appreciated 
Thanks lovely peeps
Sarah and Danae
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Hi @SarahMum and Danae behaving like holidaymakers sound brilliant fun to me.
Danae you are a girl after my own heart, crispy fries and ice cream sound wonderful to me too.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses as they might have a view on Hickman lines,
Hopefully others on this forum will share their experiences too.
Do ask your medical team any questions or concerns that you might have Danae too?
As for support you definitely both have that in bucket loads from us all.
Loads of virtual hugs to you both and please keep posting about your adventures xxxx
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Hi @SarahMum
I was absolutely petrified about having a Hickman Line put in, please tell Danae to make everyone aware of her anxiety. I had a lovely nurse hold my hand and chat to me through it all, it was nowhere near as bad as I had imagined.
The best part of having one is not having to be poked for blood!
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Sounds like a perfect time together, @SarahMum. I honestly get tears in my eyes, thinking of a mum and her young daughter going through all this. But Iām so glad youāre having a wonderful time now. I think itās a time for as many fries and ice creams as you like!
Danae, I had a Hickman line put in for my Stem cell transplant. I had been expecting a fairly quick, unremarkable procedure, a bit like having my PICC line in, because nobody told me otherwise. So I arrived at Treliske; left my husband waiting in the car, and then found myself wheeled down to Theatre for a minor op! So be prepared for that possibility.
Obviously, I was given local anaesthetic to the skin at the bottom of my neck to the chest area where the tube exits. I really didnāt know anything about Hickman lines, so had no idea that quite a length of tube would be pushed under my skin - so I was quite alarmed at that. I could feel the doctor really pushing it through, but it didnāt hurt at all - it was just just slightly weird and uncomfortable. This may have just been an incident with me, but there was a bit of blood, and it took quite a while.
I then had to wait another length of time in recovery. I was a bit upset at this point, because nobody had warned me Iād be there for a couple of hours, and that Iād have a theatre procedure, so I was stressed about my husband waiting for so long and the poor communication surrounding the whole thing.
When I finally got to go, I realised the tube that exited my chest had a bunch of three dangling plastic things (to attach the drips to) and it was quite a significant and inconvenient thing to have dangling there! So when I got back to the car, apologised to my husband for the horrendous wait and showed him the resulting bloody wound and dangling medical contraption, I burst into tears, thoroughly fed up, stressed and feeling very sorry for myself.It didnāt help that the top of the tube kept (painlessly) catching on a tendon in my neck every time I turned, so that I couldnāt immediately forget about it either.
Part of the emotion also came from realising my magical time at home with my husband and son was coming to an end, and I had to face more fear, sickness and the unknown. I really didnāt want to be wrenched from the embrace of my family. I felt quite cowardly about it. And the Hickman line also felt so much more invasive and seriously medical, which scared me. And as the anaesthetic wore off, it felt a bit sore, and very inconvenient with clothes. And clearly would prevent having an easy shower. It was actually the only moment throughout my treatment when I felt really, really sorry for myself.
However, a few days later it was all healed and I was used to the dangly weight of the line, and tucked it into newly bought stretchy bras. I managed showers. And I have to admit, it was brilliant being able to have two drips at the same time, so easily, with your elbows and wrists free of cannulas. And no needles for bloods. It made the IV lifestyle of a Stem cell transplant much easier. I was almost sad when it got infected at the last hurdle (my last week in hospital) and it was removed, leaving two small scars.
I tell you all this, because nobody told me, which made what should have been a very tolerable procedure into a bit of an ordeal. And it may also trigger a bit of emotion as you process what it signifies. If youāre aware of those two things, I donāt think youāll have the bad time I did at this point.
I think my husband bought me a consolation takeaway of my choice on the way home. Just putting that out thereā¦ as a type of alternative medicineā¦
I hope this helps to prepare you, so that you have no nasty surprises, and find it to be the stress-free and painless procedure it ideally is.
Lots of love. X
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Hi Guys
Thanks for thoughts and experiences re: Hickman line. I think the plan will be to put it in once Danae is admitted.
I could do with a virtual hug please. Yesterday we had the awful transplant talk. The one where they tell you everything that can go wrong. It was awful and I donāt think I will ever forget having to watch my gorgeous girl go through that. Danaeās TP53 gene mutation was also discussed. I didnāt realise just how nasty that mutation is and how poor the prognosis is. I cannot get my head around what a fight my lovely lady has ahead. Cancer is truly bloody evil huh?
We had a good cry, hug and talk in the car afterwards and now back at home. We have decided to again take each day as it comes. I truly cannot imagine my life without Danae in it - I told her that yesterday. I also reassured her that I will be there with her every step of the way. She knows both of these things but I felt better for saying them. 
So back up on day unit on Monday for bloods and dressing change. We also hope to get an update on transplant date as that has gone a little quiet too.
So, here we are caught in a sad and scary moment for now. I love my Nie Nie (Danae) so much
Sarah xx
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Hi @SarahMum and Danae
Yesterday must have been a horrendous day for you both, but they have to stress all the negative aspects to cover themselvesā¦
Yep, cancer sucks and I expect you are both sad and scared you are human but have that very special mother and daughter bond.
Itās a day at a time and we are always here for you both as is the Blood Cancer UK support line on 0808 2080 888
Loads of virtual hugs to both of you to put in your pockets for when needed. I know these will not be nearly as good as the special hugs that you give each other.
Look after and be very kind to yourselves and thinking about you loads xxxxx
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Hi there @SarahMum and Danae. Thank you for sharing with us. You are going through so much. Just want to send my love, virtual hugs and warmest wishes. Willow xx
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Oh @SarahMum, perhaps we should have given you a heads up about the terrifying transplant talk? It invariably upsets everyone.
I had a rude awakening about the RUNX1 gene mutation myself. I think everybody who has a Stem cell transplant has a scare about their particular gene mutation, because the whole goal of a Stem cell transplant is to get rid of particularly nasty gene mutations. No one has a Stem cell transplant for Acute myeloid leukaemia (AML) unless they have a worrying mutation with a poor prognosis. So if you can, think of the many, many tens of thousands of Stem cell transplant patients in Britain today, and remember, weāre all still here, despite the horrible gene mutations we once had, and despite feeling exactly as you and Danae did today.
And the good news is that Danae wonāt have the TP53 mutation anymore after the Stem cell transplant! She will be free of it. Liberated. Cleansed of the nasty thing.
I was also told by a consultant at my local hospital that the transplant talk uses very conservative data so as not to minimise the risk whilst they gain your consent- but it is very conservative, and a bit out of date. The treatment has really come on in leaps and bounds, and apparently the odds of a good outcome would be showing much higher if they had absolutely current data. And hereās a secret - the head transplant consultant (perhaps you had her today?) once said to me that the dept was so busy because theyāre far too good at curing their patients. And I tell you what, they will be throwing every trick in the book at Danae, because she is so young. I promise you that.
Youāre both in fantastic hands, about to have the gold standard of treatments for leukaemia. Danae is young and strong. Sheās got you. This is all looking good. Keep looking shead. And hereās that huge virtual hug for you both. ( ) X X
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Hi @SarahMum
I remember my transplant talk really well, I was sat there with my dad and everything they told us just seemed negative and bad news. I came out thinking Iām not sure if I really want to go through with this. Two years on, Iām really glad I did.
Having had 2 Hickman lines fitted I can tell you that itās a fairly simple little procedure/operation. The administration of the local anesthetic stings a little and the actual procedure depends on the person who is doing it. My second one, I said to the guy doing it have you started yet, he replied itās near done and the whole time a nurse was talking to me about what I was watching on Netflixās. Definitely beats having cannulas put in all the time and more comfortable than the pic line I had.
Wishing you both lots of good wishes over the next few weeks/months and hope you get news about a transplant date soon xx
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Hello @SarahMum and Danae
Just wanted to add in my virtual hug and of course offer a chat if needed? Transplant discussions are extremely tough and I can only imagine how difficult it was for both of you to hear. Whilst the complications feel vast there are a team of experts to manage them on the wards who will support Danae through her transplant. Your support, as ever, is vital as you can give her motivation, reassurance and a hand to hold.
Happy to talk through the Hickman Line subject too, let me know your and Danaeās concerns?
Sending best wishes to you both,
Gemma
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Awww thanks everyone. What a truly amazing bunch of people you all are. Your words of wisdom and experience have really helped. The positivity and virtual hugs went down a treat too. Thank you
So, we have picked ourselves back up from the transplant meeting floor and are back on keeping ourselves busy by mooching and eating 
!
Went to hospital yesterday for bloods and dressing change and Dās blood counts are looking really good so she is allowed to stay at home with me and be on weekly hospital visits until transplant time (now looking like end of month) but still no update on dates from donor. The Anthony Nolan team are on it but I would feel much happier if the dates can be locked in.
I have shared your thoughts on Hickman with Danae (thanks everyone) and your offer of a chat @GemmaBloodCancerUK Thank you. She seems less anxious about that now. We were also told she will have a nasal gastric tube inserted as mouth etc will be too sore to eat anything. Did you guys have this during your stem cell transplant?
I hope everyone else out there is doing okay? I have been thinking about you @Fifimac
Anyway thanks again you lovely peeps. Will keep you posted
Sarah xx
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Hi Sarahās Mum & Danae
The pre transplant talk makes it all feel very daunting. I can only give you my experience.
I was quite nervous as the day of admission was approaching. For the first week I had chemo every day and did not feel any side effects. Right up till the actual Transplant I was ok.
Day +6 I started to feel sick, mouth got a bit sore and I felt like I had indigestion a lot of the time.
I could not tolerate any food , just picked at food. I had diarrhoea and I was so tired.
Iād say I slept almost day & night so wasnāt really suffering too much. Had a temp spike one night and I felt kinda miserable but they put me straight onto antibiotics.
Looking back now the weeks passed very quickly but I think thatās because I slept so much.
The medical team are so well prepared for everything that crops up. I joked with the nurses saying ā no matter what I had wrong with me , they immediately arrived with a trolley with something to fix it ā
It was a bit rough at times , Iām not going to lie but I just slept so much. I did have a lot of nausea and really didnāt eat anything for a few days.
I couldnāt keep water down for whatever reason.
I fancied Tomato Juice, my partner brought that in for me and thats what I drank , occasionally milk too.
I wish you & Danae all the luck in the world , itāll soon be behind youā¦ I canāt believe that Iāve been in hospital , had the transplant and now Iām home.
Enjoy your time together at home , you sound like you have an amazing bond with each other. I donāt think anyone can make you feel better like your Mum.
Iām feeling not too bad and itās definitely great being home again.
I have to back to Glasgow tomorrow for my 1st bone marrow test.
Keep smiling , love to all x x
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Hi @SarahMum
Glad you are both feeling a bit better after The Dreaded Talk. Itās a terrible shock to hear what they have to say. Personally, I think they could tone that chat down a little across all hospitals. It seems to terrify the bejesus out of most people, which is a bit unnecessary. Thereās enough terror going on with the whole ordeal.
Btw, I received a written, detailed summary of The Dreaded Talk a little while later. About 6 pages long, with everything reiterated. You might want to be aware of that, and to read as little/as much as you can face. I hadnāt realised I would get that, and I ripped it open and read it, and felt awfull all over again.
I didnāt have a feeding tube. I felt like they were going to insert one at any minute, most of the time, because I did lose a lot of weight and everyone was ānaggingā me to eat, when I simply could not. Dieticians were sent with vile, fatty drinks, and talk of feeding tubes occurred. But it was the lovely catering lady who finally got me nibbling. Out of her own pocket she brought me an avocado and a vegan cake. I had to eat them, it was so, so kind of her.
Perhaps theyāre spending a lot of time trying to persuade patients who have zero appetite, to eat, and so have started feeding tubes for all? It is so important. Or perhaps Danae has no extra weight to act as a safety margin? I had 6 weeks at home at Christmas before my Stem cell transplant, and was instructed to eat as much calorific food as possible. I bravely and dedicatedly did as instructed, and I think I may have exceeded their weight gain expectations. 
So I started the transplant with a few pounds of safety margin weight, whereas perhaps Danae isnāt likely to? Although if her appetite returns, it would be a good idea for her to eat as much rich and nourishing food now as she can manage - it will help in the long run.
So glad Danaeās bloods are allowing some delicious time at home with you now. Well done both of you with your Dust Yourself Off attitude. As @Fifimac and I say to ourselves: āOnwards!ā
Lots of love X
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So glad youāre home and the transplant is over, @Fifimac! Congratulations! Youāre done! Youāve got through it! You must feel over the moon (although weak and tired still, no doubt.)
I completely agree with you about the sleeping - I slept day and night too, to escape, and because I was genuinely exhausted - and it really does make the time disappear.
The worst is over now. You may need their magic treating trolley again for a few common post-transplant issues like reactivated viruses - but I really hope you have a smooth recovery now.
Big congratulatory hug to you, and good luck tomorrow with the bone marrow biopsy. Take it very easy.
Lots of love X
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Hi @SarahMum
The transplant talk is daunting but I just wanted to get on with it as I knew it was the only way of eventually being called cured. I switched negative statistics, so I had a 95% chance of surviving the chemotherapy not a 5% chance of not surviving etc.
As for the feeding tube, I just kept refusing one, a kindly nurse told me (when I felt the nutritionist was forcing me into it) that if I couldnāt eat nutrition could be provided through my Hickman Line. I managed to keep sipping ice cold water, sucking on ice lollies and only ate toffee yogurt for a few days, then I had prescribed milk shake type protein drinks and jelly and ice-cream. By the time I went home I was eating small portions of a more normal diet!
Waiting for an admission date was hard, we just tried to do things to keep my mind off it.
Thinking of you both x
PS We are spending a couple of weeks with my donor daughter helping her decorate her first house, Iām 16 months post transplant and managing to be useful at last!
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Yay! @Fifimac
Itās so good to hear from you and that you are home. How bloomin lovely
Thanks also for sharing your experiences. I think we are getting to a point where we just want it done. As Danae says, āLetās just crack onā
I will keep you posted and please keep us all updated as to how you are getting on.
Sending love and every good wish
Sarah xx
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Hey up @Fullofbeans
Thanks for sharing your experiences and the heads up about the follow up letter. Canāt wait for that bad boy to land on the mat?!
Back to Derriford this morning as Danae needed to have the body map scan and give consent for radiation. Thought we would make a day of it so we headed on up to Tavistock for a mooch around the Pannier market and to eat lol . Just waiting on that donor and datesā¦
Thanks again and will keep you posted
Sarah xx
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Thanks @Muzza for sharing.
Sounds like you are smashing it on this side of transplant with your cycling adventures! I love cycling too - I still get out on my beloved bike 3-4 times a week if I can. As I cycle I can feel thoughts settling in my head and I return from a ride feeling better about the world
Thanks again and will keep you posted
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Hi @Suey
Thanks for sharing and I really like your idea of flipping stats around to the positive.
It is so lovely to hear how people are getting back to ānormalā lives post transplant. The only point Danae got upset during the dreaded talk was when she asked if they thought she could go back to university next year 
Thanks again and will keep you posted
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