Ups and downs

So sorry to hear where you are at in this horrible journey  and how you are feeling.

A Stem Cell Transplant journey is a rather unusual and possibly unique ‘life’ event. I say ‘life’ although it will definitely not feel like any ‘life’ you would want, but it’s a route to ‘life’

I remember having similar thoughts getting ready for my second SCT (my first did not work) and it was all very challenging but we just had to take each day as it came, once that day was over the next would bring its own challenges, surprises and encouragements.

Do remember that this part of your life is temporary and will pass.

I am coming up to my 5th re-birthday and the memories are all getting fuzzy at the edges. I am just past my 4 year remission birthday and the granddaughters insisted we have cake.

I would live to be able to lighten the load but the only thing I can give you is hope, hope for a new beginning, hope of a new life.

The Macmillan Support Services provides lots of support and is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information - you could talk with someone now and share where you are at and have a listing ear at the end of the call ((hugs))

Hi Kmd,

I am so sorry to read about how you’re feeling at the moment. Like Mike, I have been in similar places to how you describe and it is truly horrible. All I can do is echo Mike’s sentiments in saying that everything you are facing right now is temporary, it can’t and won’t last forever. That is not to negate the depth of feeling you are in, just to say that it is not fixed or permanent. If you’re finding yourself in crisis mode, distraction has always been the best tool for me - physically drag your mind to focus on something else, something active - it could be exercise if you can, it could be writing, playing a computer game, anything really, just something active to get your mind to stop thinking about what you are thinking about.

I really hope this helps in some small way.

Greg

Hi, so very sorry to read about how down you’re feeling.

as well as Mikes suggestion of the Macmillan helpline, do remember Lymphoma Action whose helpline is 0808 808 5555 as they could perhaps suggest something like a Buddy who has been where you are now? And could help by talking together? 
Covid has smashed so many support mechanisms, it’s really tough. Maybe your specialist SCT team has ideas too? It’s worth exploring all angles to get help. 
also don’t forget we are here too, I know it’s not the same but this is truly a place where you can say what you feel and know you’re totally understood!

sending hugs xxx

Thank you for replying I’m just so confused as to what to do. I want to be able to work and I can from home but I’m also struggling with my mental health so don’t want to put too much pressure on myself. I think working will help keep my mind occupied and it is just sitting in front of a computer but sometimes I find it hard to put what’s going on to the back of my mind. I feel like I have stopped living and I’m scared of everything it’s like I just want to run and hide. I’ve always tried to be independent so feeling like I have to rely on others is very difficult for me. I just hate feeling so unable to control what’s happening to me. I’m so confused as to what to do for the best. 

Thank you so much for replying. I think sitting around the house isn’t doing my mental health any good so I’m going to try and do a bit of work from home for a few weeks as they are giving my body a few weeks break from chemo then To try for the stem cell harvest. I think being in such a dark place can be difficult to climb out of and feeling like I have no purpose is half of the battle making me panic about everything the future, my job, finances,  not knowing what will happen next. 

Hi Kmd,

Work is probably a good idea. I had about 11 months off work after SCT and I did have too much time on my hands to over-think things, so I’m hoping work will give you a chance to focus on something else other than what you’re going through. If you’re panicking about the future, I would try to drag your mind back to the present, the moment. It’s much easier said that done, but it is definitely the best approach. I found losing control really difficult to deal with but I think once I accepted that some things were just out of my control and I couldn’t do anything about it, I did begin to eventually feel a bit better. The future will be what it wants to be. You can try to put yourself in the best position but you can’t control it and there is no guarantee with anything, so best to let it go and let it be. But today is where you do have control and where you can do something good for yourself, so that’s where I tried to force my brain to focus, and eventually over time, things definitely got easier and I’m really hoping you’ll experience the same.

Greg

The thought of being off work again terrifies me and not knowing how long recovery will be from the SCT is the worst. I was off six months last year during me chemo and I’ve been off since mid August with this chemo. It looks like I’ll only have 6 months of half pay then I don’t know what will happen after that. I just don’t want to lose my job we can’t afford for me to lose it. I think the worst part is like you say there was any anything I can do to change the situation it feels so alien to me. 

Hi again, it is hard not to have control of ‘present’ and ‘future’ buttons in this journey.

Trying to put some order to the noise in your head can help a lot so just a few thoughts.

Talking with professionals can help a lot. I see you are being treated at The Freeman (I had to go down to see a skin specialist before my second Stem Cell Transplant - a lovely hospital and great staff) and I noticed there was a Maggie’s Centre at The Freeman

These folks are amazing and even although most centres are on reduced face to face contact our local Maggie’s is opening up some services and there are also lots of services moved onto online video support groups and one on one support - worth a call.

Work and finances are hard subjects, again I would recommend you talk with the local Maggie’s Financial Adviser or the Macmillan Support Services as there is a team of work and financial support advisers service open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.

We can’t change what the future brings along but we all can try and put some order into it ((hugs))

Hi Kmd75,

I am not in the position of offering advice or guidance from a patient perspective like Mike or Greg, but I can offer some support from a caregiver/family view. 

You do NOT need to feel useless to your family.There is a good chance they feel equally useless in helping you! It’s tough to see someone you love going through such a terrible thing and having no real way of making it better. So, accept their help and support without any feelings of guilt. Accept that you did not choose this and therefore are not in anyway responsible for any of the bull$&!@ that comes along with it. And just know that your family loves you and only wants to see you get healthy.  

Hello KMD75, like you when I was diognoised with the cancer I have, that dark place is awful. I have just finished my treatment and won’t know for a while if it’s worked or not. I totally understand how you feel, just want to be me but at the moment feeling unwell. I’m unlucky in the way anti depressants don’t wok for me. So on small dose of diazepam, of which I’m afraid of. I see people on here saying it will pass and I think we have to take that on board because a lot of them have been through it. Covid has been a nightmare for us all. Let’s pray this time next year what someone wrote on mine dark turns to light. All the very best