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

July 15th – Day 5

Just a quick update.

Feeling pretty groggy this morning as my temperature remains at 38.2 despite numerous ice pops.. My throat is  also extremely sore make swallowing anything pretty difficult.

But….. besides those minor irritations all is going well. Yesterday I even had a visit from a lovely aromatherapist, which was a very relaxing experience and just what the doctor ordered.

Kate and Mum are popping in to play nurse maid today as Colin has to get the car fixed. It will be great to see them but they may find me a little quieter than usual. Probably not a bad thing.

The care I am receiving here at UCLH couldn’t be better. The nursing staff are particularly skilled and very holistic in their approach. Nothing is too much trouble.

Have a good day
Deborah xxxxx

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
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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.
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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.

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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!
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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
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Ready as I can be….

….for the week ahead.

So the plan is, although as you have probably learnt by now plans have a habit of changing in the world of myeloma, that we will go down to UCLH in London again on Wednesday. On that day I shall have a new pic line inserted and be given a large dose of a very powerful chemo called Mephalan. Although high-dose melphalan is the most common chemotherapy regimen used to kill residual myeloma cells just before stem cell transplantation, it often causes side effects such as diminished production of blood cells, gastrointestinal problems, and increased risk of infection. I have been told to expect to be physically sick and have a terrible stomach upset, it is a necessary evil. I will be given ice lollies to eat whist the drug is being administered to help to avoid mouth sores. The next day I will receive my stem cells back. These were harvested over a year ago and have been waiting in a freezer somewhere until I needed them. I was hoping it wouldn’t be for a while yet but unfortunately my remission following the PADIMAC drug trial was very short.

I will start off in the Cotton Rooms (the NHS hotel) but at the first signs of sickness I will be transferred to the Haematology ward. Here I will stay in an infection controlled room until I am well enough to come home. This will be from anything between 2-4 weeks depending on how well the new stem cells engraph onto my bone marrow and whether I can remain free from infection. I should expect to feel extremely fatigued following the whole process and should allow 3-6 months before I feel anything like normal again.

For those of you who may be interested to read more about the whole process, please copy or click on this link:
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/myeloma-treatment/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/

I am as ready as I will ever be and have a marvellous team to support me. I won’t pretend not to be rather anxious about the whole thing but I will take your love, support and strength with me and get through it.

I am pretty fed up of being in treatment and look forward to a time free of hospital visits even, if it is only ever likely to be, for just a few weeks at a time.

I can count my blessing as I have the most wonderfully supportive husband and loving family by my side. Not to mention all the support I regularly receive from you all.

So here goes, I shall try and keep you posted as regularly as I feel able.

Thank you once again for all your kindness, I couldn’t do it without you all standing strong with me. It is hard to put into words the difference it makes and how much I appreciate it.

So wish me luck

Deborah xxxx

The sun is shining ….

…and I am home. I did in fact manage to get back from the Lister Hospital on Sunday afternoon with a promise to return at 10pm in the evening for another dose of IV antibiotics.

On Monday I returned again,twice, this time to Ambulatory care. Nobody had told me what time to turn up but I had noticed on the door it had said it opened at 8am so I thought it best to get there early to get it over and done with. No such luck! I was told contrary to the notice it didn’t actually open until 9am but I could sit around and wait. Nowadays I seem to spend far too much of my time waiting around in hospitals and I can tell you I wasn’t happy. I was even more frustrated,to find out that although the nurses could get on with removing my cannula and taking my bloods, I was going to have to wait another couple of hours to see the doctor!

I decided to come home in between seeing the nurses and doctor as my patience was running out. This was a really good move as Colin and I were delighted to be able to catch up with our lovely friends Dave and Fiona and I felt thoroughly spoilt with the basket full of thoughtful gifts that they brought along.

Unfortunately when I returned to see the doctor I learnt that my blood results were not looking good and that I was neutropenic again. This calls, once again, for more precautionary methods as far as the foods I eat and the people as I am very vulnerable to infection. I felt pretty sick and tired by it all. Never mind the sun was shining and I had another lovely surprise as the postman turned up with an enormous parcel. It was a large tasting hamper from the Chocolate Trading Co, with the most delicious variety of chocolate’s I have ever tried. This came from my Aunty Mo in Australia, and it really changed my mood around again. I feel so lucky to be surrounded by such kindness.

Yesterday was spent relaxing in the garden, mum and dad popped by to drop is some tasty fruits and other things they thought both Colin and I would enjoy. I had a call from UCLH requesting I go up to London and see them again on Thursday considering all that has happened over the last few days. They will run their own tests and i expect decide wether to postpone or continue to go ahead with the planned transplant next week. I shall keep you all posted.

I am really disappointed not to be able to take Elliot on our planned trip to Woburn today but being Neutropenic I have been adviced against it. Hopefully my blood results will be better on Thursday and we can arrange to go early next week instead.

Have I shared with you my latest exciting news? I forget which bits I put on here and which I report on Facebook.

Well Colin and I will become Grandparents once again in February as Jem is expecting her second child. Before Elliot was born I hadn’t appreciated how much joy and happiness a grandchild could bring. It is a great privilege to play such a important role in his growing up and now we will have another little person to love.

So on that sunny and very happy note I wish you all a great Wednesday.

Deborah x

Just when you think everything is going OK….

….I go and get a temperature and end up at the Lister Hospital in Stevenage.

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I must admit I did feel very poorly. In the morning I had experienced a rough time in the toileting department but I was still determined to put on the planned lunch for my youngest daughter and her relatively new boyfriend. (This being only the second time we have met him). Colin went to great efforts to put on a lovely spread but not much was eaten sadly. Never mind there will be plenty for today. At least Colin, Pollyanna, Jem and Elliot enjoyed it.

I was so disappointed to find myself stuck in hospital again especially when I was so looking forward to some time at home before my transplant when I am likely to be in hospital for three weeks or more.

The problem with Myeloma is that it is so difficult to plan for anything. This morning I was really looking forward to having some friends over for coffee but that has now had to be cancelled.

It isn’t easy but I am having to put my visualisation skills to the test. I am imaging getting through the transplant and enjoying some great times ahead. I am looking forward to spending more time sitting out in the garden in the sunshine and going away for trips in our motor home.

Toby, my brother, kindly sent me this song and video and I think it’s just perfect, so I will spend quite a bit of time watching this over the next few days.

http://youtu.be/Z_aH1z8f6Hk

Fingers crossed I have managed to persuade the doctor to let me home today on oral anti biotics!

Deborah x

Ps. I was pleased to see the 6 C’s displayed in my room in the casualty department.

 

The plan for July

It has been confirmed my stem cell transplant has been arranged for July 9th.

Yesterday I was back at UCLH for a number of pre transplant tests and appointments. It started with me having my pic line redressed and flushed by the nurses in supportive care. This was followed up by a number of trips to nuclear medicine where I was given injections of radioactive material. I then had a cardiac scan and had to return for hourly blood tests to check my kidney functioning. I then had an appointment with a doctor in radiology who discharged me from their department following the successful radiotherapy treatment on the two masses on my spine. Last of all I had an appointment with my consultant and new specialist nurse whom confirmed the date for my transplant. I am not sure if I am expected to go into the Cotton Rooms the day before on the 8th July? The transplant starts with a large dose of strong chemo that hopefully kills off any left over cancerous cells but of course kills off many of your good cells as well. Whilst having this drug I will be given lots of ice lollies to enjoy aimed at trying to prevent mouth sores. I will then receive the stem cells that I harvested some time ago. They will be defrosted and returned to me in a side room in Ambulatory Care. This process, I believe, is pain free and takes about an hour, after which the staff sing Happy Birthday and I will then return to the NHS hotel. It is expected that I will start to feel pretty sick over the next few days and then be transferred to the hospital ward. My new stem cells need to engraph themselves into my bone marrow and apparently over the next 10 days or so I will become neutropenic. I will be nursed in an isolation room as I will be particularly vulnerable to infections, Colin will still be able to stay with me but visitors will be discouraged. I am expecting to have pretty nasty sickness and diarrhoea during this period of time but it won’t last forever and I will just need to stay strong and get through it. Once my blood results show signs of improving and I am able to eat and drink again I will be allowed home. Recovery is different for each patient but it will be anywhere between three and six months before I am back to normal again, whatever that is. The hope then is that I am in remission for a long time but there are no guarantees, it could be anything from one month to several years. It looks likely that I will be offered maintance therapy because my particular myeloma seems to respond well to treatment but has shown to return again pretty quickly. This may involve taking regular chemo medication probably in tablet form.

For now I have about 10 days to enjoy life at home and get myself as strong as possible before the transplant. I am still feeling pretty fatigued from the last lot of chemo but each day I find I can do a little bit more. We hope to get Frodo our lovely dog back today. He has been kindly looked after by Colin’s parents and will need to return there when I go in for the transplant, but we have missed him. It is good to know, however, that he is very happy in his adopted home.

Next week we hope to take Elliot to Woburn which I am really looking forward to. I will also be catching up with some old friends inbetween my compulsory afternoon naps. I may also treat myself to a trip to the spa and I have an appointment with my psychologist and the district nurses, so plenty to keep me busy.

I hope the weather remains good as it has been a joy to be able to sit out in the garden but I fear some rain is expected over the next few days.

Thank you all for our continuos support.

Deborah x