July 21st – Day 11

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.

image
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.

Deborah xxx

July 18th – Day 8

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.
image
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.
Deborah x

July 17 – Day 7

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
Deborah xxxx

July 16th – Day 6

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.
image
I hope you are all OK.
Thank you for your continuos support.
Deborah xxxx

Monday 14th July – Day 4

I’ve just painted my nails which I think gives a good indication of how I am doing so far. Although I spiked a temperature yesterday afternoon it seems to have settled down again. I can only report a rather sore mouth this morning. So far I am more than happy with progress.
The sun is shining and all is well with the world. Well at least at 7.58am it is. Unfortunately the world of Myeloma can be pretty unpredictable but I am keeping my fingers crossed for a smooth ride.
Forever the optimist
Deborah xxxx
image

Sunday July 13th – Day 3

All is going pretty well. I am still up here on T16 with an amazing view over London. It looks a little overcast this morning but I think the sun will break through.
image
Yesterday was pretty good. It was very exciting to see my sister who came to give Colin a break and the opportunity to get back home and check up on things there. I hadn’t seen Kate for a while so it was lovely to see her looking so healthy and happy.
Apart from feeling pretty tired and a little upset tummy I think things are going better here than I expected. The room is now smelling lemon fresh, thanks to Tesco’s antibacterial wipes. We even managed to pinch a fridge from a vacated room! Colin returned last night and I think we both slept pretty well.
So let’s hope today is much of the same. I think I can cope with boring and uneventful at the moment. I know I am yet to become neutropenic and that I am likely to have a few rough days ahead but I shall practice my living in the moment and take full advantage of the lull before the storm .
Happy Sunday to you all
Xxxxxx

Friday – Day One

It all started off pretty promising, but I have learnt not to plan or get my hopes up about much. After hanging around in Ambulatory Care we managed to make it downstairs in time for a successful session with a counsellor. Then it was back up to Ambulatory Care to see the doctor before being allowed back to the Cotton Rooms for some much needed rest. Unfortunately just as we got settled back down, there was a call to return to Ambi Care as my potassium levels were pretty low, so I had to hang around there for another three hours or so. Finally we go back to the Cotton rooms and I settled down in my PJ’s. I took my temperature about 5.30 and oh dear it was 38.2 not a good sign. I thought I would just leave it half hour before taking again but unfortunately it was the same. This meant contacting Ambi Care who instructed us to get down to A&E. Another 3 hours later I was finally sent up to the ward where I hung around for another 45 mins or so before a nurse finally came to see me and relieve me of the drug I was holding up, that was supposedly going into my pick line.

image
Oh dear, I do look glum!

So here I am on T16 room 20. It’s not the best of rooms as I think it smells of piss. (Sorry) I do however have a good view over London and an en suite shower room.

Last night I slept on and off, in between the various visits from the nurses for obs etc.

Who knows what today will bring. My temperature seems to have gone back down. I suppose it would be too much to hope to be sent back to the Cotton Rooms?

Deborah x

Day Zero – Stem Cell Transplant

Happy Birthday to me!
image
The Stem Cell Transplant went well thanks to the excellent nursing staff in Ambulatory Care at UCLH. It was all over relatively quickly really. I am feeling very sick but otherwise all is OK. I am hoping to get a better nights sleep tonight as last night I don’t think I slept any more than one hour if that!
So feeling rather weary I shall just leave you with a few visuals from today’s experience.
Love to you all xxx
image

image

image

image

Here goes – Day Minus Zero

I shall try and update this blog as I go along today and then post it when today’s procedures are over and I am settled back into the Cotton Rooms.

So the time has arrived. This afternoon I receive the Melphalan and 24 hours later I will receive my stem cells.

We left home at 5.45 am after a rather restless night. Colin eventually got out of bed and has his breakfast at 4.15!  It took just less than an hour to arrive outside the hospital, if we had left it any later we would have been likely to have sat in traffic for over two hours, hence the early start. So now I am awaiting  my 9.15 appointment  to have a new picc line inserted. It is a pretty painless procedure, I just hope, this being my third, it will last a bit longer as taking it out isn’t quite as pain free.

All went well thanks to the expertise of the amazing team in the Picc line department. Nothing to worry about there. Everything is carried out under surgical procedures giving me, the patient, the upmost confidence.

I have now had the once over in Ambulatory Care and all is set to go. I must admit, I was a little teary eyed as it seems to have taken a while to get to this stage and it is all rather overwhelming. I do however, have the most amazing specialist stem cell transplant nurse, who comforted both Colin and I and answered all our questions, relieving a lot of anxiety. A lovely doctor gave me a thorough health check and acknowledged that I had already been through an awful lot. I really appreciated this as he’s quite right. Two sets of drug trials (with all the chemo drugs that entails) and two lots of DT-PACE (6 chemo drugs for 4 days on the trot), is pretty heavy going.

The Mephalan now has to be prepared and I am currently lying on my bed in the Cotton Rooms after a lovely lunch in the canteen. (No I mean it, it really was delicious, either that or I am already losing my taste buds again).

I just have to wait now, for a call to return to Ambulatory Care for what my lovely specialist nurse described as, the mother of all chemo drugs. Believe it or not it is very closely related to mustard gas!  Anyway, this will hopefully be the last lot of chemo I have to have for a considerable amount of time. The signs are looking good.

So here I am sitting in Ambi Care receiving the super drug. I managed to get through 4 ice lollies so hopefully that will help to prevent mouth sores. Have also been given some IV anti sickness drugs and have more I can take later so fingers crossed I won’t be throwing up tonight.

image

image

The Mephalan has a very short expiry date as you my be able to see, so timing is very important.

It’s now 3.30pm and I am tucked up in my PJ’s back in the Cotton Rooms just about to enjoy some tea and chocolate.

All of this whole process has of course been made so much easier by your kindness and generosity. Hardly a day has gone by when I haven’t received a card or parcel full of treats. I even received a large gift box from Fortnum & Mason this week, which really impressed our little village postman!

One day down, about another 19 to go I guess.

All going well so far with no more trips out now until 3pm tomorrow when I will be getting my very own defrosted stem cells back.

Thank you again everyone, I really don’t think I could do this without you.

You are AMAZING!

Deborah xxx

PS I must also report the treatment here at UCLH, is so far, exemplary. The nursing care couldn’t be better!