Running a little bit behind as far as blogs are concerned, this one is in fact being written by my sister Kate as dictated by me. This is an indication of how rough I’m feeling at the moment.
On day 16 my temperature reached the dizzy heights of 39.8. If it wasn’t for the temperature I would be feeling much better right now.
This feels like a hurricane more than any old storm. Anyway I just wanted to let you know where I am, hopefully tomorrow I’ll be up to writing more.
Have I really been in here that long? If you count my spell in the Cotton Rooms I have actually been away from home for 17 days. I think it’s about time I went home, but the consultant thinks differently and I think he is probably right. There are a few niggles that need sorting out, the first one of these being my spiking temperature.
I have just been seen by the dietician. She is encouraging me to eat and drink anything I fancy, the higher the calories the better. That would usually be music to my ears but my appetite has completely disappeared. Still I have to force down what I can if I am to stand any chance of getting out of here.
I do miss home and my little village. Yesterday I received a lovey parcel of goodies which should entice me to eat something. Thank you Patrick, Annette, Gerald and Audrey, your kind thoughts are much appreciated.
View from our back door.
My room is also smelling even sweeter thanks to the lovely rose scented bag from Lorraine. I can almost imagine sitting in the garden.
I need somehow to get some energy from somewhere, honestly just a trip to the bathroom seems to warrant another sleep at the moment.
Talking about feeling tired, I think this is as much I can manage right now.
Most mornings I receive a picture of the sunrise captured by my lovely Aunty Monica, who is living in South Africa. It gives me hope and I have dared to start to dream again. I am seeing a glimmer of light, a period of time free from hospital appointments and drug regimes. Once I get my energy back I think I will be able to enjoy some time out and perhaps even a trip away. Maybe an afternoon tea out with friends or a lovely massage at the local spa. I know I have previously written about the difficulty of planning anything with Myeloma, as the situation can change so rapidly, but I think the stem cell transplant may have made planning little treats, a possibility. Luckily we have also just been commissioned to produce another mental health resource so this will hopefully help to make days out financially more viable. Colin and I are even considering a week away to somewhere warm where we will be able to really relax and wash away the last couple of years of continuous hospital visits. Perhaps a spa hotel somewhere in Europe, even if it’s just for a few days. If anyone has any recommendations please let us know. Ooh it does feel good to dream again.
I think the paragraph above gives a good indication of the changes in my health. There is even talk of coming home at the weekend. I just need to get my temperature and diarrhoea under control. I also need to be able to manage without the oxygen, but it’s only Thursday so I have a few days to go. I even managed a few mouthfuls of McDonalds yesterday. I usually wouldn’t touch the stuff but I fancied some salty chips and the nurses recommended the milkshake due to its high calories. I also managed a whole banana which I need to try to consume daily as my potassium levels are regularly on the low side.
Today I feel I have lots to be grateful for so I just thought I would list a few of these below:
. That my stem cells have engrafted
. An army of willing friends and family that keep me upright and moving forward
. The scratch card I received in yesterday’s post that won £5
. Hearing the voice of my chatterbox grandson on the phone
. A text from a friend saying how proud I must feel of my daughter, which I am.
. That my husband can go home today for a well deserved break and I will be ok
. The excellent nursing care I am receiving at UCLH
There is so much more but I need to prepare myself for breakfast now.
The sun is shining and so am I.
Enjoy your day
Good morning.. I am delighted to report that my health is definitely improving. I even managed to eat a little yesterday including one of these very special, handmade, individually wrapped, toffee’s from Fortnum and Mason. Thank you once again Sharon for such a thoughtful gift. Besides the excitement of receiving a parcel from such an exclusive shop, the treacle toffee brought back such happy memories of bonfire nights at the Cocker’s. Sitting under the big willow tree with Jarvis, Saskia and Kate and enjoying the homemade sweets and the warmth of the fire on a bitterly cold evening in Sheffield.
I feel a little hungry this morning and was quite looking forward to my Rice Krispies only to be reminded that I was nil by mouth! I have a scan of my liver booked for 10am.
Although I am feeling a little brighter my temperature is still spiking and I continue to have diarrhoea. I am also still on oxygen so until these issues are addressed there is no talk of coming home I am afraid. After 13 days of sitting in the same room I am ready to move on. Still I will use this time wisely and try to slowly mobilise myself. My body is very weak and my muscles have deteriorated somewhat but I think a little gentle exercise will help improve matters. The physiotherapist is due to pop by today as is the dietician so I will listen carefully to there advice.
Thank you for all your comments. I am sorry I haven’t got around to individually responding to them all, but I can promise you that they have all been read and very much appreciated by both Colin and I.
You really are a great army to have on one’s side.
Lots of love Deborah xxx
The sun is shining and the storm has settled. Today will be a day of calm. My neutrophils are up to 8. I am still feeling pretty sick and visits to the toilet are too regular for my liking, but I think I may have turned a corner. I now need to start to try eating as I have the threat of an NG tube hanging over me. So far I have managed half a weet-a-bix with milk this morning and I drank almost a whole, very sickly chocolate ensure drink last night.
I must thank you all once again for your love and support, wether it be through your comments on the blog, via Facebook or from the lovely cards and gifts I continue to receive daily. Yesterday I received a lovely card with the words smile on with a scratch card inside. Sadly it wasn’t a winning ticket but exciting just the same.
Remembering past days in the sunshine and looking forward to many more.
Happy Tuesday to you all
Sorry I missed out on yesterday’s blog but even my eyeballs were hurting!
So here I lay continuing to ride the storm in my protected, air conditioned, sterile room high above London, with the most amazing views.
Unfortunately I had a pretty rough night. If I’m not tossing and turning or getting up to visit the bathroom then various machines are bleeping in my ear. The nurses have to come in and out to take regular obs and put up another IV medication or transfusion etc. This is not conducive to a good nights sleep even if my body wasn’t aching and I wasn’t constantly feeling like I was about to throw up. Still that was yesterday and it’s behind me now.
This morning dare I say I am feeling slightly better, if you ignore the short bout of sickness earlier. I am even wondering if I dare try some Rice Krispies this morning. Having not eaten anything now for at least 5 days you might think I may be losing a little weight, oh no not me, I have actually put on about 7kg’s!
The good news is that my neutrophils are rising and are up to 1.3. This means the new stem cells are graphing into my bone marrow. Soon my own immune system will improve and start to help my body to repair and hopefully keep that annoying temperature down.
Thank you all for sticking by my side you are my Rock.
As you can see I am not feeling so good. Temperature rose to 39.3 at one point. Needed oxygen, platelets and blood.
But besides all that my mouth feels a little better.
Riding the storm
I am riding the storm well but it’s pretty fierce. Last night was particularly rough and this morning I still have a temperature of 38.3. But I’m still smiling and in between the low points I perk up as this photo shows.
I am on a morphine pump and that together with Colin’s special cocktails I am doing OK during a difficult period. Only a few days to go and things should start to look better.
I am now flat neutropenic and I am suffering. Yesterday and last night were not good. Too many ailments to go into details. And this this will be short. Nothing isn’t as expected I am just riding the course.It was so refreshing to read, that a fellow health professional and myeloma sufferer, was expeririencing the same problems as me a month ago but yesterday left for a holiday to Francs.
There is life after transplant and I am looking forward to it.
Thank you for all your good wishes
Well I am definitely Neutropenic now. Today I start my GSF injections which aim to help chivvy on my immune system. So I should be starting on an upward trend. If this is so I think I have got away more than lightly. True my throat is very sore and my diet consists of not much more than ice pops at the moment. And what comes out the other end is less than pleasant but so far I haven’t had any of the sickness I was dreading.
To keep myself uplifted I am recording the days on my whiteboard so that I can see how I am doing. I saw my lovely stem cell nurse yesterday and she was delighted on my progress and reckoned I would be home in about a weeks time. I just need to get my temperature under control. Fingers are all crossed.
I hope you are all OK.
Thank you for your continuos support.