How are you?!?!

Apologies…. bit of a long one!! Bonus points available for anyone that makes it to the end!!

This is one of the questions that I dread since being ill.It feels like such a loaded question which can be so difficult to answer as well.

feeling-today

Ok, I understand that I am resenting people who are trying to be caring and show concern. However, a lot of the time people want a simple, short answer and that’s not always possible in my situation.

Do I answer it based on how I am that day? i.e. today I’m pretty tired, bit rashy and feel like i need to sleep for a few days to feel human again, but tomorrow things might be loads better or loads worse.

Do I answer based on a summary of the last week/month? Generally this ends up with saying that things have been up and down, or last week was horrible but I’m feeling better, vice versa. This is usually the approach I take.

But there is more to it than this. For a start people tend to only see me on a good day. When I’m not as good either mentally or physically I tend to hide away a bit. Equally I am very stubborn and when with friends I like to keep up with everything they are doing, or try and be the ‘Emma’ I was and want to be before I’m ready. Therefore people will start to assume I’m getting better and possibly wondering why I’m not back at work. But they don’t see me suffering the day after. They feel how pooped I am after that yoga class. Equally if I say “I’m well” then this is in perspective of my bad days, which is probably completely different to what others would consider a good day!!

So how am I today? I’ve already said I’m tired physically. But I am also tired emotionally, possibly a bit overwhelmed. A lot happened today!

I went to Cromer over the weekend with friends (I will do a separate more positive post about that when feeling a bit more positive as I had a fantastic time) so consequently I am tired from all the crazy activities

I then went to London today to meet up with my manager (or manager’s manager really!) for lunch and to discuss what has changed at work and how things are looking my side. The aim I had was to be looking to start part time in September, but I would ask m consultant again today for her advice. I also had a wander around the new 5th floor where my team sits and said hello to old work friends. It was fab to see everyone, but I almost felt like a new girl with all the new faces and being shown around the new floor. And as you can tell from above all the “How are you?” “When are you back at work?” became a bit overwhelming.

It also brought back all the memories of working in the office. Mostly good memories, but also stressful memories. It reminded me of what my like was like nearly 10 months ago! Left lots of questions; Do i miss it? How soon do I want to go back? Am I ready? And made me realise how much I miss these people and the atmosphere of a working environment!

Then I went off to the hospital for blood tests and consultation. My blood test results weren’t great as I am again neutropenic at 0.53. Got the ole GCSF injections to try out again and see if we get an improvement. Been tested to see if the CMV levels have come down, but won’t get the results till end of the week.

I then asked my consultant her opinion on me going back to work. She said the normally advise a minimum of 6 months, which takes us to July. However, because they haven’t managed to decrease my immune suppression at all (in fact they have increased it to avoid GVHD) and because of my CMV reactivations she advises for me to be signed off for a year post transpant. Even then she ideally doesn’t want me to be commuting during winter due to all the bugs, etc.

A Year?!?!? 

But staying off till the end of the year feels a lifetime away. I feel I might lose my marbles.

So yeah – today has been a bit overwhelming with lots of different emotions running around and now I’m not sure how I feel! Think I need a few days to digest all this and determine how I feel about it!

 

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13 thoughts on “How are you?!?!

  1. I feel for you Emma. It seems there is a lot more to deal with than the obvious physical symptoms: your own feelings and the huge impact on your day to day life; and other people’s feelings and reactions too (plus a whole lot more that I can only guess at). I’m learning a lot from your blog. Hang in there, I think you’re awesome!

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  2. Sarah Reakes

    Hi Emma,

    I really do understand how you are feeling as that’s just how it has been for me. The old saying: the spirit is willing, but the body is week” is played over and over with me. I know I’m a lot older than you and naturally that has some bearing but in other ways, it’s just purely down to the effects of the transplant and how long your body takes to fully engraft and rebuild it’s immune system and as we’re always told, ‘everyone is different’.

    The one thing that the medics did not prepare me for is the feelings of pure fatigue I get from time to time especially if I overdo it one day, I well and truly suffer for it the next. I started to think that there was something seriously wrong with me and that the transplant wasn’t working when in every other aspect, they are really pleased with me as I’ve been off immune suppressants since day +80 and other than the penicillin V I’m off all prophylactic drugs, but the very fact that the protocol for taking prophylactic drugs doesn’t totally stop until 12 months post transplant makes you realise just how fragile your immune system is. What has helped me to come to terms with the slow speed of my recovery is the Anthony Nolan pamphlets which covers subjects such as fatigue and emotions, and it really helped me to understand how I was feeling and not to be hard on myself. It vindicated me as I started to understand that what I have been feeling is ‘normal’ and I just have to give it time.

    I had the same problem as you with constantly having CMV reactivations and then being given Valganciclovir to treat it but that thankfully has stopped and is now a dim distant memory. I really think you are being overly optimistic to think that your poor body is going to be well enough to go back to work at six months – it really does seem too soon both physically and emotionally for the reasons that you yourself have outlined above. You need to allow your body time to adjust and heal. At times I have felt less well further on from my treatment than I did say during some of the earlier stages, and that is also explained in the Anthony Nolan pamphlets. It really is two steps forward and three back sometimes. I think trying to get people around us to understand how we are feeling is the hardest thing of all. They seem to think that once you’ve come through the chemotherapy and the transplant itself, then it’s all ‘done and dusted’ and if you look good then you must be feeling that way, and of course, it couldn’t be further from the truth.

    It really is an emotional roller coaster, and I do feel for you Emma as you are young and of course you want to get back to normal life as soon as possible so at times you must feel overwhelmed and in turmoil. It certainly has made me feel this way at times, and I haven’t got the same pressures on me that you obviously have. If you can engage some of your family and friends in reading some of the Anthony Nolan literature it may go some way in helping them understanding what you are going through and how to interact with you. Get them to go into the Anthony Nolan website as a starter. Only recently I asked them to send me quite a few pamphlets which I read on holiday in our caravan last week, and I found them really helpful and thought then that this is the sort of thing that my family should be reading so that they can understand how I’m feeling at times. I noticed that you have posted your recent blog on how having a transplant affects ones sex life and so you probably know more about the site than I do as I’ve only just gone into it.

    What you must tell yourself is what you are feeling is perfectly normal and that in time it will pass and you will look back on it as a distant memory. What you don’t want to do is to be in such a hurry to go back to work that you put yourself under more strain than you are ready to deal with. Set yourself realistic goals and make these your markers but all the while recognising that you do have to be flexible. Reading other peoples stories has been a great help to me in making me realise that I’m doing ‘good’ but I have to be patient.

    I have a different set of obstacles to you as I’m now having to face having two replacement knees as I’m in such terrible pain, and my life is just unbearable right now so I have no choice but to have to plough ahead with this as my next challenge, but I’ll be honest I’ve had enough of hospitals, treatments, procedures and now more operations. My husband has had two new knee replacements and so I know exactly what I’m in for and the risks attached to the operation, and that on top of my transplant I have to say does freak me out if I think about it too much. Hopefully I will have had all my childhood inoculations by then (I’m having my second booster next week) and it will be about nine months before I have the first knee done so I should be two years post transplant by then which is when they say that your immune system has had time to fully rebuild itself albeit that it is still very young.

    You are strong Emma, but be kind to yourself and try and be patient – I know it’s hard!

    Love Sarah x

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  3. Sarah carroll

    Hi Emma, gosh I’ve often wondered how / whether to ask the question “how are you” …. it applies to anyone really….such an open question and not always a well thought through one. You’ve explained it all so well. Thank you for that. Just on the ‘work’ point, I’ll be your “buddy” when you decide it’s the right time to return, as I’ll probably feel like a newbee having taken time out after all those years. You’re right – so many changes and new people…..and yes, work can be stressful of course – but you’re also completely right in saying all of those positive things about work….so in a way the two are intrinsically linked – “how are you” and “how’s work” – both have their ups & downs. Let’s hope there are far more highs than lows just around the corner 🙂
    Xxxx

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  4. Ian Wright

    Well Emma I made it to the end, can I have my bonus points please.

    Reading through all your blogs I know what you’ve been going through having also read my sisters.

    I never realised you worked in London, I works in London from1998 through to 2012 and I knew what a massive drain the travelling was for some one who was well, not sane, just well. Had a similar journey to you as well.

    Glad you had a great weekend away with your friends, everyone needs good friends, and I love Cromer and that area.

    Listen to your consultant and don’t return to work until you are really well enough because they will assume your better and expect you to perform at your maximum and within a matter of days will forget just how poorly,you’ve been.

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    1. Thanks Ian. i am cautious about returning to work, mostly because the pressure I place on myself rather than work. Work have always been very understanding when I have returned after sick leave. 🙂

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  5. Llinos

    I hope you feel positive again soon, a year sounds like a long time post-transplant. I often wonder how you are and how recovery is going. Hopefully in that year you’ll be back on form and putting all of us to shame with all you activities 🙂

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  6. Laura P

    Stay strong sweetheart.
    Sharing your story with the world “warts and all” shows us all just how brave you are and it will inspire others.
    You are in my thoughts, sending love xx

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