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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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.

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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!

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

It’s good to be home

I have been back home for a week now. I spent the first few days in bed but I am now getting dressed and slowly making it downstairs. I still feel very fatigued and nauseous but each day I am a little bit stronger. We have asked our friends and relatives to text or ring before coming over because some days we just don’t feel up to having visitors and don’t want to appear rude by turning them away. It is surprising how tiring just having a conversation can be. The Macmillian nurse came out to see me last Sunday as I was feeling particularly poorly and I was due to have the district nurses round to flush and redress my pic line and take bloods on Wednesday. Due to poor organisation and communication the district nurses apparently didn’t have the right equipment for the job so I had a call on Thursday requesting we go back up to UCLH yesterday. We have a day full of appointments there next Wednesday so have managed to put it off until then as quite honestly I just don’t feel I have the strength to go back down there again at this moment in time.

Yesterday I had a visit from a good friend and ex colleague. It was good to catch up and both Colin and I really appreciated the homemade quiche, chocolate and ginger cake and soda bread. Every day this week I have received a card or a gift in the post from some kind person which has really helped to cheer me up.

I have received the provisional date of July 9th for my stem cell transplant. Both Colin and I are pretty anxious about this as we are well aware of how sick I am likely to become. Not that this last round of chemo hasn’t had quite an effect on me both physically and emotionally but apparently the transplant is the next step up according to my consultant. I have recently been reading the blog of a fellow health professional who also fairly recently received a Myeloma diagnosis. He is about a month ahead of me as far as treatment is concerned so has recently had his stem cell transplant. It is very useful to read about his experiences, although it can be very different for each patient. It was particularly comforting to read it yesterday and learn that he had a day of ‘normality’. For those of you who may wish to find out a little more about what I could be likely to experience you can read his blog by visiting www.jowwells.blogspot.co.uk
Tomorrow is a fundraising event for Cancer Hair Care. They have been very good to me and I will try to pop along in the morning if I feel well enough.. Thank you Wendy for the wig, I shall put it on tomorrow even if I don’t make it to the event itself.

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Have a great weekend and thank you all for your continuous support. Xxx

Back in the Cotton Rooms.

After a short spell at home we are are back here again. I shouldn’t complain as we do have a lovely room but it’s just not home. The blood test they did yesterday showed that I was already ‘flat neutropenic’ meaning my white blood count is very low or at zero. During this time as I have no defence mechanisms  I am likely to pick up infections. This is why I am here being closely monitored. As soon as my temperature rises or there are any other signs of an infection I will be transferred to a hospital bed.
I was really quite poorly last week with horrible abdominal pains. Betty’s marmalade on toast with Cheshire cheese cheered me up as did these lovely flowers from my brother.
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Although I didn’t get out of bed for three days, when I did sit out in the garden it was lovely to see how the place had changed. I just wish I had the energy to do some weeding, although that is not encouraged when your immune system is low because of the risk of picking up an infection from the earth. Thank you to mum who planted three courgette plants and just look at this lovely clematis.
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Hopefully my numbers will start to rise again soon, I am keeping my fingers crossed for being home by the weekend.

Have a good day

Deborah x

Day four of second round of DT-PACE

I am feeling pretty exhausted and constantly nauseous but despite this all is going as well as could be expected. We are staying in the Cotton Rooms again and Colin was given a bit of a break as Kate came and acted as my carer on Friday night accompanying me to Ambulatory care on Saturday. It must have been pretty boring for her as I spent much of my time sleeping as the nurses attached various different drugs to my Picc line. Colin managed to get the lawns mowed whilst the weather was good.

I have been spoilt once again by good wishes and thoughtful gifts so Thank You so much for all of these. Although I am mostly surviving on Ensure drinks at the moment I have lots of goodies to look forward to.

The plan is to be back home again on Monday once my 24 hr chemo has finished and been detached from me. I will then return to the Cotton Rooms a few days later as my blood levels start to drop and I become neutropenic. This is the time that I am at my most vulnerable and must avoid any risk of infection so will avoid visitors. Hopefully this time round I won’t get an infection and be admitted to the hospital but being here I will feel more confident. Last time around I thought that my consultant was being a little over cautious but I soon found out how ill I could quickly become so I won’t be taking any chances. If a I develop a temperature before I get back here I need to get to an A&E department within 40 mins so I will need to attend my more local hospital which unfortunately I have little faith in. So probably around the 7th June, I will be booked into the a Cotton Rooms once again, for quite a few days and will be monitored closely in Ambulatory Care. Once my blood results have started to return to normal I will then be able to go back home. It will then be 2-3 weeks before returning to hospital for my Stem Cell transplant. I am trying not to think about this too much at the moment as the thought is really too scary to contemplate but it has to be done.

Emotionally I am trying to remain as strong and positive as I can as I know the importance of this on my physical healing but I can’t pretend it is easy. However with your support I am managing and looking forward to a holiday sometime in the future.

Thank you all once again for your positive wishes and thoughtful gifts.

Deborah xxx