I’m not feeling like myself today and this post probably isn’t going to be like my usual posts either.
Most of the time, I feel able to fight this disease and everything it throws at me. I try to think positively, to make the best of what I’ve got, to look forward to a future that is not ideal but is mine. Most of the time, I feel like I have managed to adjust to living with a chronic illness; to the highs and lows of the rollercoaster and the hurdles it throws in my way. Most of the time, I can honestly say I am happy too.
Today is not one of those times. Today I feel like I’m carrying a huge weight right next to my heart and my mind is racing. I feel alienated from everything that is going on around me. I’m emotional and restless, unsure what the hell to do with myself. I’m not even confident which way is up right now.
I guess the cause of all this is being faced with Chemotherapy and Stem Cell Therapy / Bone Marrow Transplant. It’s nearly two weeks since it was first mentioned and I held it together pretty well for a while, but suddenly I feel overwhelmed. I’ve been trying to get through the reading my Rheumatologist sent me by reading only a little bit at a time; firstly, because I want to understand it but also, because it is such a difficult read emotionally. Which would explain why each time I have read some, that weight in my chest has got a little heavier. Yet, it needs to be done. I need to at least have the knowledge to help me make a decision, so what choice do I have?
I honestly can’t believe that it has come to this and really don’t know how I am going to make the decision. There are so many related issues and things to consider. There isn’t just me now, there’s my fiance’s future in the balance too. We still haven’t given up on having a family one day, but then how does that fit it with this? Chemotherapy will probably make me infertile and so we’d have to look into fertility treatment to preserve embryos beforehand and then face the horrendous process of IVF afterwards. Or there’s a small chance we’d be advised to try naturally first, but wouldn’t that make the decision to go ahead even more difficult as a mother? What if something happened to me? People do die from this treatment. Then I’m supposed to be getting married in a couple of years time and suddenly I’m scared of arranging anything. I want to travel, but do I do that now ‘just in case’?
My thoughts go on and on in circles like this, with more and more questions arising with each point.
It may sound like I’m focussing on the morbid but those are the things that are hard to get my head round and the risks feel very real to me right now. I want to talk to somebody about how I feel but I’m actually worried about scaring my family, my friends and especially my fiance too much. I can’t even bring myself to discuss what I’ve read so far with him because the fear in his eyes at the mere mention of it is too much. I’ve asked my GP if there is a counsellor or anything I can access but he says this is ‘too big’ for them, that the appropriate counselling will be offered to me at Sheffield. But I kinda feel like I need someone now.
I know things will be put into place in due course and that I might be getting ahead of myself, but from the moment this option was voiced my mind has been racing. How can it not? It is very difficult to think about anything else right now.
I also know that the outcome of this procedure could be very positive; don’t worry, I haven’t forgotten that, it’s just not why I’m posting today.
I’m posting because I’m tired of being brave. I’m scared and for the first time I feel very, very alone.
L
It’s so hard for you being a pioneer with this treatment, Laura, I hope that Sheffield can help you have contact with people who have had the treatment before you. You have helped me to feel less alone with my Still’s, I gain strength and hope from your blog, fb and twitter feed, and I hope that this online community of fellow spoonies will be a support to you as you face this decision. You can say whatever you like to us, we will not blench! Thank you for being so honest. I wish you courage and fortitiude. All the best, Ros
Laura I completely understand what you are going through. Although I’m not quite in the same position, there is a very real chance that I will be in the future and so I have thought about this issue a lot. It is indeed very scary, and obviously being a young engaged woman makes everything a lot more complicated.
Like you, I have not fully discussed the reality of this situation with my husband and family, because I don’t want to scare them/face it. They are aware that I would need to stop my current medication before trying to conceive, and that I could become very ill/disabled in the future, but other than that tend to bury their heads in the sand, and assume/hope all will be fine when the time comes. I sort of bury my head in the sand too, although I secretly worry about it all the time.
For what it’s worth, I do think the key thing you need to concentrate on now is preserving your own health. I know loss of fertility is a terrifying thought for someone in your position, believe me, but that shouldn’t be the reason why you don’t go ahead with the treatment if it means the possibility of a new lease of life for YOU.
I agree with the comment above in that I have found your blog to be SO helpful/informative and inspiring while trying to deal with my Still’s too. No matter how supportive friends and family are, sometimes only someone else going through the same thing can provide real comfort/assurance! I hope you find the strength and courage to make the decision that’s right for you xxx
Thanks Nisha, it helps to hear from someone dealing wesith similar thoughts. The family issue has always been in there in the background but I guess I always thought I’d one day be stable enough again to think about stopping the medication and trying with the support from my doctors. I never thought things would come to this point.
I know I shouldn’t let fertility worries rule my decision but it really does break my heart at times. I’d definitely accept any option to preserve embryos beforehand and then that way at least I would know if I was in a position health-wise after the transplant to go ahead with those family plans. Others have suggested we try naturally before the procedure because the first stage is coming off all medication (except steroids) anyway, since you need your marrow cells to be fully functioning. There is a chance of remission with pregnancy that makes it tempting but at the same time it all seems too uncertain to be a responsible choice?
I have to be realistic – there are fatalities with the procedure, which is what stopped us from going ahead with it when I was about 17. We were in similar discussions and a girl of the same age with Dermatomyositis (my diagnosis at the time) died after the transplant phase. I hate to sound so pessimistic but it makes me worry about even planning my wedding, I didn’t imagine I’d have such a thing overshadowing it. Then again, I have no idea what timescale they are thinking of. I need to hang fire a little bit and wait to see what happens at the appointments in Sheffield.
Thanks for your support too Nisha, it really does help to know I’m not alone in my illness and my thinking.
Take care,
Laura
Thank you Ros
I’m glad that you feel that way about the blog, as well as recording things for myself I always hope that it will help others who are going through similar things, especially with something as rare as Still’s Disease. I still want to take it further and expand but it’s taking me longer than planned.
I’ve been feeling much better since Friday, when everything just seemed to get on top of me all at once. It does feel lonely not having anyone or anything to look to for experience with this procedure and some people around me don’t understand my reluctance, although they are starting to the more they listen to what it involves. I’ve also been spending a lot of time on my own during the day and I don’t think that helped; I have some family and friends popping in this week and of course the spoonie community are an immense help.
Thanks again for your support,
Take care
Laura x