Breaking the silence

Sorry I’ve been a bit quiet of late, I’ve not been feeling myself both physcially and mentally. I’ve found being home quite exhausting and then I got readmitted to hospital, which all led to me not really wanting to talk to anyone! I will try and update you of the highlights over the near 2 week period…..This might be quite a long one, and with no pictures either! Sorry! But I will give headlines so you can skim through!!!

First week back at home

So what have I been up to? I’ve been pretty well restrained as I’ve been quite tired. Just kind of bumming around the house, going for short walks, starting the unpacking process and trying to get settled.

Physically I’ve found my appetite is fairly erratic, I won’t feel like eating anything all day and then suddenly by the evening I’m starving. Also the hardest thing I finding is to drink water, although my Gran’s advice is just to guzzle it down and get it done!  Instead of water I’ve taken to drinking coconut water which just feels so much lighter in my stomach, just need to be careful I don’t OD on potassium!! But at least I’m getting some hydration. I’m really tired, and have been sleeping for hours but also find myself just gazing for hours not actually doing anything, but I guess this is to be expected.

Thursday I traveled to Kings for a blood test and NHS wig appointment. Minus getting my wig (will post a picture once it’s been styled) it was a total waste of time! Waited nearly 3 hours just for a blood test by which time the results wouldn’t get back in time to get the doctors to review! Reckon the nurses had a rotten day of being whinged at by patients, but the blood analysers just weren’t working properly that day which set everything back.

At the weekend something wasn’t right…..

After Thursday I was just absolutely exhausted, Its a tiring day getting the train to london and back and getting across to Kings. Also, just being sat around on uncomfortable chairs for ages. Friday/Saturday/Sunday I just had NO energy. I barely wanted to move from the sofa on saturday, I had some low grade fevers (highest of 37.7 but always came down really quickly). Also there was a strange pain and swelling in my neck which was just getting worse and worse. Sunday I decided I couldn’t cope anymore and took myself off for a fun day out at A&E.

Checking into hotel PCH and getting fed up

I ended up getting admitted to PCH with a suspected clot in my neck from my line. I was put on IV antibiotics because of my temperature and booked in for scans. Kings put me on the list to be transferred over to them on tuesday, although luckily (just to avoid the thaff of my mum/dad having to drive down when I’m discharged) this wasn’t necessary.

I was a bit flat when in hospital though, especially having to stay on the MAU (medical assessment ward). Over the last 6 months i have probably only spent a total of 3/4 weeks at home, I know the food menu inside out and nothing inspires me and I was just getting used to being at home. Also my bodies reaction to the clot had taken it out of me, i hadn’t been eating or drinking much and therefore couldn’t really be bothered to do anything. Even knitting/crochet! You know I’m bad when that happens!

After a few days of blood thinners and being moved to haem/onc with my lovely nurses (you don’t know how much difference it makes seeing all the familiar faces) the swelling started to go down, my temperature stayed down and I started to feel better in myself. Although i wasn’t eating or drinking as much as I ought to due to the antibiotics making me feel rotten 😦

Released on Thursday and straight to kings!!

I was released back home thursday evening, but had to go to kings friday for them to give me a once over. We attempted using a taxi to get to the hospital from kings cross but not sure how much walking it really cut out. I still did 8k steps without intending to!! And compared to the 100-200 a day I had been doing in hospital it was a bit of a shock to the body!! Also, my bum hurt from sitting on uncomfortable chairs – I’ve lost all my muscles and padding in my bum, I’m back in my size 6 jeans (now 53kg!!).

Kings were happy with everything and sent me on my way with some extra magnesium tablets (yuck!) to give me a bit of a boost.

Home again and beginning to perk up

I’m still on daily IV antibiotics so had to pay a visit to the hospital to get topped up each day. Even after the marathon to Kings!! Generally though I’m a bit more settled at home and I’m managing to eat and drink a bit more. Although the one thing that isn’t good is that I generally fancy stodge more than I fancy any  fruit/veg so not sure how nutritious it all is!! None of it tastes quite right so toast/crisps tends to be my go to snack. My diet at the moment is probably the opposite to what it used to be! ha ha!

Now trying to find things to do this week (organising meeting friends, etc) to give me a bit of focus and keep my mood up!! Fingers crossed I will make it to a week at home this time!!!


8 thoughts on “Breaking the silence

  1. Chris Onions

    Sorry to hear of your temporary setback but very pleased things are again heading in the right direction. Hope you soon get your sense of taste restored to normal so that you can get back to your usual diet. Very best wishes from both myself and Rowena. x


  2. Ian Wright

    Hi Emma, I haven’t got MDS but your blog will inspire everyone who reads it. My sister Linda Coultrup is also going through what your enduring (having her ups and downs and currently in York hospital) but she has also written a blog. Think you need to get together to combine all of your highs and lows and in my opinion get something published. I believe all this information would generally help all sufferers now and in the future to get a better insight and understanding of what they are up against. I read the guide that the professionals put together, all 140 pages and kept going back and re-reading parts that one would criticise against the other.

    And wigs, you don’t need a wig, far too cute as you are. Take care. XX


  3. Jenny

    Hi Emma

    I found your blog through Bloodwise as someone close to me is about to start treatment for CLL (Chronic Lymphocytic Lymphoma) not MDS but not a million miles away. I agree with Ian that, maybe in collaboration with other patients/bloggers, it would be great if you could one day publish something, recounting your experiences first hand…

    In the meantime I’m glad you’re again feeling a bit better and able to eat, even if it does all taste a bit rubbish. Thanks for taking the time to write it all down Emma and keep smiling 😊


  4. Diana Lockyer

    Sorry to he you have had a rough time recently. Do hope you soon get back to knitting & crocheting. Also hope your appetite & fluid intake improves. In spite of everything you are doing so well


  5. Sarah Reakes

    Hi Em,

    Sorry you’ve had this set-back but glad you’re back home and recovering again. The way you have described the way you are feeling right now is exactly how I felt. I know It’s so difficult to put into words but what you are describing is basically brain-fog and exhaustion from the intense chemotherapy & conditioning chemotherapy treatment you have received, and like you, I just wasn’t functioning normally and all I wanted to do was sleep and when not asleep I couldn’t concentrate on anything; it often felt like an out of body experience – quite odd. It is all perfectly understandable and I think quite normal when you think of what your body has been through, and it has been through a hell of a lot. Unfortunately the medical staff don’t necessarily know how to warn patients how you are going to feel because they haven’t been through it themselves and they only know from what patients tell them.

    Also as far as appetite is concerned, eat what you fancy within the constraints of whatever advice your hospital has given you. I fancied fried eggs and grilled bacon with tomato sauce, and toast and marmalade for breakfast. So much of my regular diet just didn’t taste right and I found sweet stuff tasted unnaturally sweet and so I fancied savoury over sweet food. It really does take a long time to get your taste buds tasting normally again and this inevitably affects what you fancy to eat. Also I found that it took a long time before my digestive system was working anywhere near normal again. The sickness and nausea went on for a long time.

    Also I found it challenging that I just didn’t know from day to day, what my energy levels would be like and trying to drag myself into hospital for my outpatient appointments which were three times a week for the first few weeks was so difficult, especially when there was also such a wait for blood tests, and then to actually see a doctor. When I got home I just wanted to go to bed.

    It’s very much a day at a time and I know what is frustrating is that you can’t plan but you just have to let your body heal and take it a day at a time and try not to get too down about it.

    I’m struggling right now trying to get over the virus that I picked up on 4 January that just won’t clear up. I think I’m over it and then I wake up with an awful sore throat, aching joints, productive cough, and lethargy and I think, ‘hear we go again’, but I’ve got to remember that I have a very young immune system and it will take time to fight off these viruses and I’ve just got to be patient, but it is difficult especially when there are so many things that I want to get done.

    You’re doing really well and you have to keep telling yourself this and just go with the flow for a while until you start to regain your energy levels again, which really does take time. Even though you have been through this once before, it’s amazing how you soon forget what it was like, and it could be that this time it’s a bit different from before.

    Take care.

    Sarah Reakes (SCT +334 days, Member of MDS Patient Forum)


  6. Hi.
    My brother was diagnosed with MDS last summer and on Monday he was admited to hospital in Norway for a transplant.The transplant will take place the 23th of February. Not many young MDS patients here in Norway, he is born in 1988. Glad I found your blog and looking forward to your updates. Best of luck!

    Tuva, Norway


    1. Hi
      So sorry to hear your brother has got mds, yes we are the rate young ones with the disease. I’m 1987. I hope the conditioning has been kind to him so far. My advice is to keep moving and eating as much as possible!
      I hope my blog is helpful but if there are any questions I don’t address then please ask away! Em


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