Home!!

Day +19

I’m hoooooooome!!!!

Yesterday evening I got realeased home and after a true hack cross london, a cheeky burger king we got home around 10pm. Which is great, yet bizarre. I’m still waking myself up at 2am and 6am ready for the nurses to come in and do my obs/bloods. I still managed to get some serious snooze time in though and finally woke up at 11am. Also peeing straight into the toilet is a novelty, I’m still looking for my jug or trying to estimate the size of my wee!

It quite tiring being in a house rather than a tiny room with an ensuite. I’ve pretty much had to have a mini lie down after walking up/down the stairs (going down is actually harder). Also I’ve been getting this weird restless leg thing where after moving around a bit my legs become ridiculously itchy, its like my skin feels like there are bugs crawling under it! I’m also getting spasms in my muscles too. Think this is all as I have started moving around the house more and activating all my muscles again.

So what did I do with my first day of freedom…..

First thing I did was sort out my drugs. This is my breakfast and dinner….. who needs food when you’ve got this lot to take!!! (Luckily as I’m on tacrolimus rather than ciclosporin then my tablet collection are mostly small ones (cicloporin tends to be known as horse tablets!!!!))

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At lunch today I had a interview/chat with Emily from Anthony Nolan to talk through my experience of applying for IFR (individual funding request) for the second transplant. It came back pretty vividly how stressful a time i was. Hopefully we will see the full campaign to get second transplants funded next week or so in some of the bigger newspapers. Will keep you all posted.

This afternoon I had a short visit to PCH for a quick check up on my bloods. Was lovely to see the nurses/staff and have a catch up. Lovely to see all the friendly faces. Then we popped to Sainsbury’s to grab some food for me. Found it totally overwhelming trying to think about it. I haven’t really been thinking about food much over the last few weeks as I’ve just been trying to force things down despite no appetite and limited choice on the menu (when you’ve been in and out for 6 months it feels limited!!). Having a whole supermarket full of food kind of stumped me!!!

This evening bought an element of normality having some friends round for a catch up with Dominoes and ice cream. I actually amazed myself in how much i managed to eat, probably due to the relaxed setting…….. Fire, good food (well trashy food but i fancied it!!), good company, chillleeeddd……

 

Tomorrows jobs…….Actually start unpacking some of my crap and do my tax return!

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7 thoughts on “Home!!

  1. Sarah

    Wow, Emma!!!! Welcome home!!! How absolutely wonderful to hear, and I can honestly say that your news has brightened my evening. Now, I know you’ve got ants in your pants but please please please do rest when you can, as you really need your energy for strength & wellbeing – and unpacking can wait (as can the Sainsbury’s shop- pizza take out was a far better idea!). Seriously, ask one of your local friends to grab you some Colour Persil liquid and an in-wash Colour Catcher and shove the whole case of clothes on a 60 degree wash; that should do it 🙂 I’d love to cook a meal and deliver it to you, but given the distance is there anything that I can get delivered to you instead? I can in some small way empathise with your restless legs, as I’m in the throes of that little annoying little spasm phase myself (third trimester pregnancy side effects) and just as I settle down to watch a bit of TV once I’ve finally logged off from my day job, I get the itches, tingles and jumps…and then I wake up in the night sometimes with darn awful spasms! But this is one side effect of using your muscles again that you can really do without, after everything you’ve been through girl! My midwife says that circular movements with your feet, outwards and inwards, and elevating them above chest height, works well- so please try this. Also, random but she also suggets almonds, and a glass of Ribena at night time. I’m trying it all! But seriously, brilliant news, and you really are an inspiration, and a shining beacon of an example of someone who “Can and Will”. Keep up the good work, but please don’t overdo it, and God bless you, back to home comforts and surrounded by family & friends. I’ll report your wonderful news back to my kiddie winks on the school run tomorrow :-). Sarah & family xx

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  2. Sarah Reakes

    Hi Emma,

    Just caught up with your latest blog and so delighted that you are home after 19 days but really surprised that you are not being told to be more careful about what and where you eat and where you go.

    I came home after day +13 and boy was I glad to be out of hospital and in the comfort of my home and some decent food to tempt my appetite which took ages to return because of the effect of the chemotherapy and the feeling of sickness and nausea etc. Also I couldn’t chew or swallow because of the ulcerations so my husband pureed my food. Also whilst I was in hospital I was on a ‘CLEAN diet’ and assume that you will have been on the same diet that had to continue until day +100 because my immune system was so delicate and that meant only drinking boiled water, only eating vegetables and fruit that could be pealed so no salads or soft fruits, and certainly not allowed to eat out at restaurants, take aways, convenience foods and the like. I also was told to keep away from crowded places like supermarkets, shops of any kind, cinemas, etc and this is what I kept to. I was so terrified of the risk of picking up an infection that I preferred to stay at home until I was told by the hospital that I could be more adventurous, and certainly no visitors who had any hint of a sniffle. Basically home isolation.

    Please don’t be in such a hurry to get back to normal because as you have written you are not in a normal situation yet and you still have a way to go so don’t do anything to put yourself at risk.

    It’s a bad time of year for nasty bugs and viruses and I’ve been suffering with one since 4 January which is going around at the moment which started as a heady snotty cold with horrible phlegm and catarrh and is particularly nasty and keeps going and then coming back. It has also left me feeling terribly tired and with low energy and when I had my six week check up with my Consultant yesterday she said that there is swine flu going around and so I had swabs taken of my nose and throat as they can actually give medication to treat this whereas nothing can be given if it is a cold or flu as these are viruses. Other than this problem my blood counts were fine and they were pleased with me. So what I’m trying to say is that I’m day 323 and my immune system although immature (and like you I shall need my childhood inoculations when I reach 365 days – 1 year old) my immune system has had more time to build so please please be careful and take it slow and steady. Listen to what your doctors tell you and don’t take any unnecessary risks; you did say in one of your earlier blogs that you were in too much of a hurry to return to work the first time round, so listen to yourself!!!

    You are so lucky to now be in the comfort and security of your home so make the most of it, although I know you will probably have to attend outpatient appointments three times a week for blood checks to make sure you haven’t picked up any infections (I kept testing positive for the CMV virus and had to be given valganciclovir to treat it – this is because both my brother and I were already CMV positive and so this is what can happen), but if you and your donor are CMV negative then the chances are that it won’t be activated. The virus is in all of us but it does funny things when your immune system is suppressed.

    I also had to be re-admitted into hospital on three occasions after the transplant and put on iv antibiotics because of infections that were introduced through my Groshong central line which resulted in me being in hospital for 4-5 days until they identified the actual bacterial bug and were able to treat it with the appropriate iv antibiotic and I was only allowed to go home if there was an oral equivalent drug they could give me. My line was the source of every infection I had and so I was glad when they took it out on 12 May as it had been in since 20 January. I didn’t have any readmissions after that and any infections I have had since have been treated with oral drugs.

    Do take take care and don’t be in such a hurry!!!.

    Sarah Reakes (also had a stem cell transplant day +323)

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    1. Hi Sarah,

      I am being careful don’t worry. I am sticking to my clean diet at home (didn’t know that takeaway pizza would be an issue though to be honest). But I’m not boiling my water because I don’t think even the hospital does that, I’ve just been told to avoid bottled mineral water and to run the tap for a minute before using.

      Everywhere I go I take and wear my mask. And I am picking times that I know it will be quieter, although Sainsbury’s is the only time I have been somewhere other than hospital!! The most germy places I’ve been so far are the bloody hospitals. At kings outpatients yesterday I swear everyone was coughing and sneezing around me. Also getting the train there and back I hate being confined with so many people. Proper freaked me out!!

      Basically don’t worry I am chilling out at home as much as I can!! And thank you for offering advice. I’m sure I will be on the ward with a line infection at some point, but hopefully that will wait a few weeks until my immune system is a bit stronger!!

      Em

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  3. So delighted to hear you’ve grafted, your counts are on the up and you’ve been given the green light and been allowed home. Amazing news. Enjoy your “freedom” and look forward to hearing about your continued progress. I check-in to the Beatson in Glasgow for my SCT in 14 days!

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  4. Sarah Reakes

    Hi Em, Good to hear from you and totally understand your comment about the worst risk of infection being the hospital. As you say it is full of ‘very sick’ people with infections and of course the hospitals are always kept so very hot with little ventilation; a nightmare and it always made me anxious.

    However, really surprised about the boiled water as I was put on this in hospital as soon as my neutraphils were zero and I was definitely told to continue with this when I returned home. I was actually given a pamphlet on what constituted a ‘clean diet’ and kept to it religiously. In fact I continued with the boiled water regime up until about two months ago just to be on the safe side but I have to say it is a pain in the arse to have to do it. I used to boil up water and put it into large glass jugs and let it cool and then put it in the fridge so at least I could have chilled water. I really would suggest you check with your hospital because I really thought this was a standard protocol across all hospitals for recovering stem cell transplant patients.

    Anyway, glad you are continuing to do well it was good to hear from you.

    Take Care

    Sarah

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    1. I will certainly ask the hospital!! I was always just told to run the tap for a minute or so before using it and to avoid mineral water.

      Unfortunately I’m back in hospital with something not right with my Hickman line. My neck is tender and swollen just above it, but the line seems to all be working ok…. Weird! Will find out soon x

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