Preparations afoot for my stem cell transplant

[Scaredy_cat]

I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going to be late January but having named dates came as a shock and I had to take my ostrich like head out of the sand. Getting more scared.

[Cat1001954]

try be calm take one day at a time. I hope it all goes well lots of hugs and we’ll wishes x

[umpalumpa76]

I send you a big tight hug 🤗 and a hat full of 💩 because in Hungary it means: I wish you lots of luck 😅

[hunter5582]

Wishing you all the best moving forward on the SCT.

When dealing with fear, my mantra is from Frank Herbert, Dune.

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain."

Do please stay in touch and know that you are not alone. many thoughts and prayers headed your way.

[mother2britton]

Very understandable, take it one step at a time and stay strong, looking forward to hearing about your success.

[Poppy6060]

oh bless you think anyone would be scared but I am sure you will be looked after well hope all goes well best wishes Poppy

[IrishSarah]

Completely understandable that you’d be a bag of nerves! Trust in the team taking care of you, trust in your body and trust in yourself will carry you through. One foot in front of the other, one step at a time, one day at a time. (Easier said than done I know!)

It’s an amazingly brave step you’re taking and we’re all cheering you on from the sidelines. You’ve got this 💪🏻💚

[ConniesDad]

Sending best wishes to you. As Irish Sarah said above, one foot in front of the other and at the lowest points, remember to stay positive and ‘keep your eyes on the prize’.

Good luck

Garry

[Cja1956]

Naturally you’re scared. It’s so understandable but you’ve got this. Like others have said, just take one day at a time. Sending best wishes for a successful outcome.

[Otterfield]

It's great that you now have a date but it makes it all very real doesn't it? As others have said, take it one day at a time as each day is different and you can sort of tick them off in your head.Although it's scary, the doctors and nurses are constantly on hand to hand out medication or to offer comfort and reassurance.

Afterwards, don't worry if your blood counts take a long time to recover. That's normal with Myelofibrosis.

Keep in touch when you feel able.

Very best wishes, Jennie

[Scaredy_cat in reply to Otterfield]

Thanks for that. You know there is itv+1 and channel 4+1, I look on you as me + however many days ago your transplant was. Are your counts anywhere near normal yet.....how long typically does that take? Are you still having transfusions and how is the gvhd?

[Otterfield in reply to Scaredy_cat]

That's a good way to look at it! I think I'm on about day +130 now. My husband keeps track. My counts are still quite low but have been stable. Although my haemoglobin remains around 90, I feel relatively normal and go for two short walks every day. I haven't had a transfusion since mid November and last Friday they finally removed my Hickman Line. My GVHD is much better now, but my skin is very dry. I don't believe there is a typical time frame for counts etc to recover and we can end up scaring ourselves if we try to compare.Very best wishes, Jennie

[marlenablue]

All the best to you! It is understandable that you are scared. Have you tried meditation? It has helped me a great deal. I use an app called Headspace to guide me but you can find guided meditations on YouTube for free as well.

[Aldebaran25]

I can well understand being anxious about this. From what I read it's a long process and I send you all my best positive vibes and a big hug. I hope it all goes well and smoothly for you.

[MFBMT2011]

Full speed ahead and just dodge the icebergs. Remember, be a person not a patient using the bed only when you need to! Seek a slot to shower every day in between infusions. Take entertainment with you to keep yourself occupied. I listened to music and watched dvds as I couldn’t concentrate to read

They practiced on many of us here to get it right for you!

When I was going in many years ago I conjured up a cold and that delayed me a month, so keep your head down until you are in. 😀

Best wishes

Chris

Ps My wife and I are in Bristol area next week if you want to chat or meet an SCTer and sidekick. Now that’s really scary, but Emily survived! PM me any time.

[EPguy in reply to MFBMT2011]

Good point on practice. I've read that SCT has improved greatly in the last 10 years or so. All about getting the details right.

[Cat_lady52]

All the best, I'll be thinking of you.

[Dodders]

Wishing you all the very best. A good book, or audible, keep a daily diary journal, walk up and down the ward when you can, have treats, make a point of meditating through the peace and solitude when in that time and space, marvel at what is happening, and can happen for your future. x

[Meatloaf9]

Hi Scaredy cat, so sorry that you have to go thru a SCT. I think it is only human and normal to be afraid of a SCT. Maybe try to look at it as an opportunity to Cure your mpn. I think that is the only cure right now for mpn's. Wouldn't that be great. You will never know how many on this forum will be praying for you, I think I can assure you it will be a lot, Best to you going forward. Keep us advised of your progress.

[KC63]

Wishing you all the very best for SCT x

[CanadaG]

Hi there. I can certainly understand that you’re getting more scared now that you have firm dates for the SCT. I think everyone with MF thinks about SCT as it is the only cure right now and we are all told by our Doctors that SCT can be a challenging process and recovery. I know I literally think about SCT every day even though I am considered low risk and am not eligible for one. I suggest that you do your best to focus on the curative aspect of the SCT and be very patient with yourself through the process and recovery (I know this is easier said than done). It is very normal to be nervous and scared ahead of any medical procedure, let alone SCT. I wish you well with the procedure and a strong recovery. I will keep you in my prayers. There are many good people on this forum who have been through SCT and recovered and I find it encouraging to read their stories and experiences.

G

[Wewo01]

Sending positive thoughts and energy! Deep breaths and know how all of us here are holding you up!

[Heidi-W]

Wishing you all the very best and we'll be thinking about you lots. Tons of good advise above from those who have been through it. Good luck