[IzzieParticipant]

Hi everyone

Just to let you know that the ‘writing is on the wall’ and I have a definite date of the 7th May for admission. I have to go the day before for blood tests and the like but I can go home and return the following day. My specialist nurse said I would probably be in for 2 weeks minimum and probably no more than 3 – does that seem about right? Also since I am not a very patient patient – when will I feel any effects?

Can’t wait to get it over and done with so I can get on with my life – it is just over 12 months since I was diagnosed ( can’t believe how the time as flown!) but feel like my life as been on hold since then. My family – especially a dear sister have been marvelous and honestly don’t know how I would have coped – both mentally and physically.

Onwards and upwards
Love to all
Izzie

[rebeccaRParticipant]

Hi Izzie, glad it’s all moving forward for you – this is a strange time I felt the same excitement and anticipation as tho’ I was going on holiday? (forever in denial!). At Leeds they quote 3 weeks but I think this is so you’re not disappointed or unrealistic but was told as time went that most people gp home about the 16 – 18 day mark. If I were you I’d bank on 18 and count down from this when you’re in and anything less is a welcome bonus. After the melphalan it can take about 5 days to hit rock bottom and another 10 days to go back up – until you go down it all seems abit of an anti climax – but enjoy that time. I know you haven’t felt well coming up to it so I don’t think you’ll notice a vast difference. Just keep crossing the days off your “count down” calendar as no matter haw crap you feel you feel a lot better when you can cross another day off and acknowledge it’s only a very short time period in there. Stay focussed on the bigger picture of remission. I am now 4 1/2 months post SCT and life has gone back to normal (except in the mind). Tonight I’m playing my first tennis league match of the season. At diagnosis it was intimated I would only be able to have a “knock about” due to impact, anaemia, kidneys etc. I don’t think you can fight disease biology – just take the treatment and see if it works – the real fight is to get back to the “normal” that you wish for yourself and family. This is your recovery goal.
Stay strong and stay focussed,

Rebecca

[bandityogaParticipant]

Izzie

My husband will have to make the decision to go for SCT if he reaches remission. It must be very frightening but if it was me I would always wonder what if.

Hope all goes well and you will get a long remission .

Maureen

[IzzieParticipant]

Hi Maureen

Thanks for your reply – much appreciated – since I will be in hospital for at least a couple of weeks – I don’t think I will be off this forum – not much else I can do. I think I will be boring everyone with a blow by blow account and asking you all for advice – just waiting for it to be over and done with so I can get on – just feel like I’ve been stuck in
Limbo for the last 12 months.

Thanks again and my very best wishes
Izzie

[IzzieParticipant]

Hi everyone

As you know go in tomorrow for my chemo – stem cells on Friday. Just been to-day for all my last minute blood tests and the like – asked them what my paraproteins were – as have not been on any medication for a while – since I was waiting for my admission date. They told me that my pps showed a trace – too small to measure. Feel thrilled – hope this is a good omen – was worried that they would be slowly creeping up. Best bit of news I have had for ages!!
Truly amazing that one small piece of good news makes one feel so much more positive – ready to take on this bloody awful cancer that we have. Anyway just wanted to share it –

Love to all
Will keep you posted
Izzie

[rebeccaRParticipant]

Hi Izzie, that’s great news – you are going into SCt with the best possible chance of a long remission as many, including myself, go into it without having been able to get to your stage. Research shows that the greater you get to 0 paraproteins the better it is for SCT. I know how positive you’ll be feeling now as even the slightest bit of good news/improvement in things sends me ecstatic and “lifts” me up for a such a long time as well – guess in myelomaland we quickly learn to value/enjoy anything positive and celebrate accordingly (now wish I’d done that more pre MM – never wanted to celebrate getting older/birthdays now I can’t wait for my birthday!). Enjoy your last night – hope you have as much wine as chox as you can…or whatever floats your boat.

Good luck, Rebecca

[rebeccaRParticipant]

OOPS – meant to say enjoy your last night at home for a while.

[bandityogaParticipant]

You must be pleased with results. Good luck with SCT. Hope it gives you a long remission .

Maureen x

[stanley-1960Participant]

Hi Lizzy,

All the very best for your SCT , the positive news on the PP result should spur you on Aligned with the goal of remission after the melphalan.I am on cycle 2 of 4 CTD and the SCT for me can’t come quick enough. Maybe i’m a bit of a strange one.

Best regards,

Stanley

[lezastarkeyParticipant]

Good luck Izzy. Hope it all went well. My husbands on 3rd cycle and Pps are 17 and SCT is in his sights. Keep us posted on your progress

Leza x

[keithmtParticipant]

Hi Izzy,

I’m now 44 days post SCT and feeling much more like my old self. As Rebecca said, Melphalan kicked in 5 days after having it and probably got slightly worse for a further 4 days. Then the climb out starts although it’s taken a few weeks. I remember well that the 2 days post SCT I felt like a new person, it was amazing, hope you get the same buzz.

I was told to expect to be in hospital for around 2 weeks and they kicked me out after 6 days, but of course, everyone’s different.

Good luck to you on this next part of the journey, it’s where things start to turn a corner and your trace of paraproteins (mine was 4 at SCT) sets you up really well for remission. Fingers crossed for you.

All the best

Keith

[IzzieParticipant]

Hi All
Thought I would be on this forum everyday – but due to being indisposed – so too speak – couldn’t be bothered. Must feel a little better – as you said Keith 2 days after the chemo felt fine – but not anymore. I have no appatite and have not eaten for three days but still manage to be sick – also the tummy trials have now kicked in ( to-day is Saturday) so waiting to see how long I am going to ne ill with that side of things. The staff have been marvellouse – changing medication – suggesting alternatives – I have seen more consultants and doctors in the 10 days I have been here than ever I did when I was initially treated as an outpatient.

Do any on you think I am through the worst of it? As I said before I am not the most patient of patients not sure if it harder that what I thought or not as strong as I imagined – the jury I out on that one. What did you say Helen – that’s its a roller coaster that we are on – I can’t think of a more apt way to describe it!!!!

Love to all
Izzie

[rebeccaRParticipant]

Hi Izzie, sounds like you’re doing really well (in myelomaworld wellness scale of course!). I think now you’re at that tricky “tummy” stage once that subsides – mine took a few days but got easier- you’ll be well on the upside of it – that’s how it was for me. From going in to being on the upside say 14 – 15 days so you’re nearly there, finishing line just round the final bend. Well done you must be feeling pretty relieved, but pretty grotty at the same time. Best wishes

Rebecca

[IzzieParticipant]

Hi Rebecca

I knew I could reply on you to give me good news – you are always so positive and I truly believe it stood you in good stead for your excellent recovery – will see what tomorrow brings – i am taking a day at a time and trying not too dwell to much but it is already day 10, they can’t keep me forever! Just hope no problems crop up that could throw a spanner in the works.

Love
Izzie

[rebeccaRParticipant]

Thanks Izzie, but trust me it’s a constant fight to be positive and nnot get drawn into a black hole when you have a teenage daughter to think of. My positivity is up when I feel I live my old normal life which is why I am a little obsessed with pushing myself on the exercise front as that was my normality. When I posted how I’d got m y fitness back and playing lots of tennis – all very positive – I omitted to post about when I collapsed twice in the early post SCT days when I was trying to walk too much, do too much too soon to get my normality back. I was hell bent on getting it back because I could visibly feel and see the relief on mu familys faces when I started doing my daughters paper round (used it as a goal for walking/measured progress). Yes I am playing in the tennis league and back to normal now but it was my husband who pushed me to go for a “knock” when I could barely move to hit it. My coach saw and was so concerned he suggested I play with a soft sponge ball (for the under 5s) But I didn’t. I cried thinking I’d never play again but hubby took me every day for 15 minutes for a little knock then it soon got easier – he needed to me to do it, to reassure himself we could have normality. Recovery affects all the family – they anxiously wait to see signs of “normal” again as much, if not more, as we anxiously wait to see it. We are both of a “no pain no gain” attitude to fitness but would not recommend this approach to others after SCT – at one stage hubby thought he’d killed me! However, I think this dogged approach by me, and a lot of him, paid dividends because I went from strength to strength. Hope your hobbies are knitting etc as it eill be much easier on you! There is a lot of positivity on this site and achievements as that’s want we all need to hear – I never posted once during my SCT as I felt so traumatised and horrible with it, in fact I came home feeling convinced I had pose traumatic stress! I never think of it now, barely remember it as I move on quickly when I feel better but my husband talks of it a lot – well the when I was home bit of it. Stay focussed on home and your recovery and like childbirth it’ll be very forgettable.

Rebecca

[Author]

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