Stem Cell Transplant ( Sct )

[intothelight]

I've been home a week and a half now and my immune system is 23 days old. Being post transplant has a lot of the same emotions tied to it, as being post PTSD diagnosis. There was the person I was before the transplant, just like there was the person I was before the PTSD. It is hard to be so incapacitated, but I know I am making progress. Just baby steps each day, but looking back they add up. Same with the PTSD, baby steps, but looking back they add up.

That is what I need to keep reminding myself, so I don't find myself frustrated or depressed by my current physical condition or limitations. At the same time, I need to be thankful that I am recovering so well. I went on line to read blogs of other patients and their post transplant experience. Some were remarkable and encouraging and others were just downright sad. Again, it is a lot like PTSD and reading posts here. You can see some people making amazing recovery and others struggling continually.

But I guess that is what it all boils down to at the end. Each person is an individual and no two peoples journey's are the same. Whether is is battling cancer or PTSD, it is in the work that each one does to get better, and the celebration of triumph and the support to get through a set back that really help. But most importantly, it is the spirit of continuing to seek healing and working towards the goal with the hope that everything can and will get better.

 

[Britt.f7]

That is what I need to keep reminding myself, so I don't find myself frustrated or depressed by my current physical condition or limitations.

My cousin and I were just talking about this. She underwent thyroid surgery a couple weeks before I underwent my ICD surgery(which was way less complicated). She said she was a bit frustrated by how long it is taking to heal. I am frustrated by how my surgical wound looks. But, each of us have people in our corner who remind us of the time it takes and that we really are doing well. It really helps our mindsets and we understand, as you say, small steps are good.

Of course our experiences are way, way, less intense then yours but some things about recovering are similar. From a person who has had many health issues over her lifetime, ones that will never go completely away, I can definitely say they change you. I'd like to believe for the better.

I'm glad you are healing, both with the Cancer and the PTSD, small steps and all.

 

[Deleted member 6617]

I've been home a week and a half now

And I couldn't be happier to have you home!!!!! :hug:

 

[intothelight]

Hits some rough patches yesterday, and ended up crying a bit.

In just a few months I have to think about maintenance, and that is provided the cancer is gone. If its not gone the protocol is tandem (back to back) transplants. That is a thought that I can't even let enter my head right now. Just the thought of maintenance was overwhelming as some is done with chemo and others go a route of bone building medication and a supplement.

Bottom line is I am chemo'd out. Just say the word and I can burst into tears. For the past year my life has revolved around chemo and that is a long time. Funny things is now with the break in the chemo, it is all just hitting me. All the fear, uncertainty, pain, fatigue and struggle.

So I did the logical thing and felt sorry for myself and cried. But it hasn't been until the past two months that I have really felt the full effects of all the treatments. Not a pity party, but just honestly the emotions of fear, grief, pain, fatigue and everything finally processing and releasing.

Tough to give myself permission to feel these and to let myself cry about it. Also confusing because I feel hopeful and a sense of having "overcome". Allowing myself to feel emotion is tough, especially if it is something I consider negative emotion. But that is the trick, there is nothing to judge here. They are my feelings and they are all OK.

 

[Tinyflame]

Sweet sweet Deb, I so wish I had helpful words, but can only say I so relate to exactly what ypu've descirbed. With your last post, and almost-always every post.

You are right. I think you should just get in all the love and rest you can, sent from here as well my Dear Friend :hug: :inlove: , and try to go a day at a time.

(((((((((((DEarest Deb, xoxoxoxoxox)))))))))))))), (((((((((((((PH too))))))))))).

 

[Tanishq]

Hi intothelight, here is a healing and gentle hug for you. :hug:

 

[Britt.f7]

Into the light, all your feelings are normal. You can't possibly go through all this and not have down times. I like to think of those times as a time of renewal. Where you gain back your strength so that you can go forward.

Taking a warm shower by candlelight and letting the tears fall seems to have helped whatever it was I was going through. Pamper yourself and give yourself the love you need.

 

[Whitneys story]

Deb, On the road of a huge trial which you have experienced. And are rising above, you have been through unbelievable challenges.

Allow yourself to release all the past emotions. It is healthy and not a pity party. Tears remove toxins from our system. Let them flow.

You are a inspiration to the Universe. It is not a race but you are the winner!

 

[Deleted member 12723]

Deb you are doing the best you can and I think you are doing very good at being. I am envious that you can cry real tears. I so wish I could cry. I think I would feel a lot better. You are doing amazingly well for what you have been going through. I am sure all of your feelings are perfectly normal for what you have been through. Big hugs and prayers. You keep on going forwards and feeling better on the days you can.

 

[Britt.f7]

Not a pity party

You know what, I think people should be allowed to have a pity party every once in a while. As long as it isn't something that continues for days. It gives you a chance to validate how you feel. I like to have them with streamers, confetti,maybe balloons and a glass of champagne... and of course chocolate and your favorite treat. I allow myself this and then I move on. I say, yes Britt, it's okay to mourn and I'll give you some time, but then you have to pull yourself up by the bootstraps and charge through it. You can do it. Yes, that's what I tell myself. It's a relief to give yourself permission. It's like you are patting yourself on the back saying yes, it stinks, but you'll be okay...again perhaps, but you'll be okay...maybe not the way you wanted it...but okay.

I don't look at it badly. I only give myself a day, usually less. More than that and you feel sorry for yourself and that I don't think is good. Why pity party and feeling sorry for myself have two different connotations to me, I don't know. Maybe because I decided to focus on the party part of the pity. ;)

 

[intothelight]

I've been out of the hospital now a little over three weeks, and January 19th was my one month "re-birth" day. (One month post transplant.) Even though I thought I had read up, talked with other transplant patients, etc. there is a big different in what I "thought" it would be like, versus the reality.

Of course I had heard the horror stories and that fear of the unknown really made me anxious before I went into the hospital; but what I really did not grasp was the "it will take a year to recover". I got that it would take my immune system that long, but what I could not grasp was the fatigue. Others had written about it; but to understand it, you have to experience it.

This is the part I am finding most frustrating. Mentally I am feeling so much better and more alert and able to focus for longer periods of time. Chemo fog has some similarities to PTSD fog, and exercising your mind helps with both. But the whole fatigue thing is a different story.

So I guess I have to look at where I was three weeks ago. I need assistance walking to the bathroom and showering. Now I can walk around the house without assistance, go up and down stairs, load and unload a dishwasher, fold clothes, take the dogs out, etc. The frustrating part is that each activity leaves me short of breath and requires that I rest afterward. It is tough going from being extremely active to struggling with the most basic of living skills.

What I have to keep in mind is this recovery does have something in common with PTSD recovery. Even though it seems slow, the baby steps add up. So when I look back at where I was, I can see how far I have come.

Recovering physically and mentally, one step at a time.

 

[Nicolette]

What I have to keep in mind is this recovery does have something in common with PTSD recovery. Even though it seems slow, the baby steps add up. So when I look back at where I was, I can see how far I have come.

So true. You are doing amazingly well Deb!!