justanothermanictuesday

It's not Monday – The Bangles got it wrong

The Drugs Do Work

Just when I thought everything was going along smoothly according to plan, the plan changed! Having been given what I thought to be a firm understanding that I would get a 5th round of treatment followed by Christmas off, my family mobilised themselves to spend Christmas here in Birmingham and plane tickets were bought. The doctors have now decided that 4 cycles are enough and therefore there is a possibility (admittedly a small one) that I could be in hospital over Christmas. I expected recriminations but my family showed an unexpected level of stoicism, and to their credit, and to a man, stated that whatever happens, it is what it is and I wasn’t to worry.

Why the change? Well I suppose it started with my consultant going on holiday, a cruise in fact, which meant that for my usual end-of-cycle appointment I was due to see one of his colleagues. The day before I was due to attend, I got a call from Beccy, the Clinical Nurse Specialist, to say that my appointment had been changed to the following Monday because the stand-in consultant would have more time for me then, and he would need more time because I would not be getting a 5th cycle of treatment, but would be moving on to preparing for stem cell transplant and he would need extra time to explain it all. This news left me somewhat flummoxed. I felt uneasy that so big a change had been made ostensibly in the absence of my own consultant. I felt I needed Martin there to help me haul in all the information. Although it was a working day, Martin arrived in time for the appointment in his work suit and carrying a solicitor’s notepad and pen. As we were called in we overhead one patient remark to his wife, ‘Look, that lady’s got her lawyer with her’.

The stand-in consultant proved to be just as kind and knowledgable as my own and readily explained the reason for the changes. Firstly, I had already known I would at some point be getting a Monday appointment with another doctor to discuss stem cell collection in detail. Though I didn’t previously know it, this was THE doctor I was due to see on that Monday anyway. When he realised that he would see me in clinic the previous Thursday in lieu of my own consultant and then again on the Monday following he thought it made no sense to see me twice in short succession, so he decided to combine the visits and save me an extra trip. As for the cancellation of the 5th cycle, when he showed me the graph of my blood results, with my most recent one added, it became clear even to me why a 5th cycle was unnecessary. The paraprotein line, which had fallen so dramatically initially was now levelling out and was almost horizontal. It was obvious that very little would be gained from another cycle. So instead I had reached the point where I was ready to press on now with stem cell treatment. When we saw the graph and heard the reasoning both Martin and I were reassured. Although my own consultant had seemed so certain about the need for a fifth cycle, that was a month earlier and the clinical picture had changed. Another cycle would add nothing and might in fact do harm. This is because the treatment itself is not value neutral, it carries a negative risk to liver, kidneys and heart. The point had been reached where the risks now outweighed the benefits. It was time to move on to stem cell transplant.

The first stage of stem cell transplant is the collection of my own stem cells, which are frozen and stored and then given back to me following high-dose chemotherapy to completely destroy any remaining myeloma cells. Stem cells have the potential to develop into any type of cell the body needs. That’s why they are unique and so useful. They are transplanted in the hope that they will develop into white blood cells and other useful cells which are inadvertently destroyed during the high-dose chemotherapy. During the period between receiving the high-dose chemotherapy and the stem cells having converted into sufficient white blood cells, I will be at very high risk of infection. This is why stem cell transplant is done as an in-patient. I get admitted for a minimum of 3 weeks. Harvesting my own stem cells is done on the day ward a few weeks before I get them back. Stem cells are produced in the bone marrow and are collected from the peripheral blood supply. To encourage the bone marrow to make extra stem cells and to release them into the circulating blood, growth hormone is given for 4 days before collection, known as apheresis, which is the method by which the stem cells are harvested from the circulating blood. It is a bit like dialysis. Under the new plan, the 29th November will be the first day when I begin injecting growth factor in the evening, for 4 days. On the fifth day, which is a Monday, I will go into the day unit for the apheresis. A blood test will be taken first to ensure that there are enough circulating stem cells available. When confirmed, I get hooked up to the machine. Blood leaves one arm, goes through the machine whereby the stem cells are centrifugally extracted, then the blood is returned via the other arm. The process takes about 4 hours at a time, on two consecutive days.

The process of collecting the cells shouldn’t cause me too much hassle. The growth factor which mobilises the bone marrow can cause bone pain. It also tends to cause pseudo flu-like symptoms but these effects resolve within a few days. By contrast, the stem cell transplant is much less comfortable. The one single infusion of high-dose chemotherapy is so powerful that it wipes out all the remaining myeloma cells and the white blood cells as well. I am likely to feel nauseated for many days. My hair will fall out and I am likely to experience extreme fatigue. The cells forming the mucosa of the mouth and gullet and gut become degraded so eating and drinking (even if you feel like it) become very difficult. This period in hospital is likely to be the worst part of all my treatment so I am not looking forward to it. However, friends and acquaintances tell me of their experiences which sound even worse, so I know I have to take it in my stride. Prior to being admitted I will have an echocardiogram and lung function tests just to ensure that I am physically fit enough to undergo stem cell transplant. Some people are not fit enough for it and I am well above the usual age limit, but if I can get through it, I get the best chance of staying myeloma free for longer. As I have said before, myeloma can’t be cured, but can be managed. Stem cell transplant kicks the ball far into the long grass, so I might get several years before it comes back. It is the best option for me, and I am lucky that they are offering it to me in view of my age. I have to play my part as well as I can.

In the meantime I have been enjoying a lot of things. Friends and family have been to stay. We had a wonderful few days with friends staying in a Martello Tower in Suffolk managed by the Landmark Trust. Next week we are off with different friends to another Landmark Trust property in Devon. We had a lovely weekend in Salisbury two weekends ago where we caught up with lots of old friends and benefitted from ongoing beautiful weather. I attend my singing group, ‘Sing and Tonic’ as much as possible, which I am sure will help my lung function tests. I get up for quite a bit during the day to do tasks and then I retire to play electronic Scrabble and have little naps. Martin has done loads in the garden and today I went with my friend Elizabeth who is staying with me to the local garden centre to buy plants to refresh the cane boots plant container my grandaughter Anna got for me last Christmas. I don’t want her to come over for Christmas and find them neglected! On Monday I am out to lunch with two more friends. Despite the myeloma, I am still enjoying life a lot. I am enjoying these beautifully sunny autumn days, with the leaves now golden and bronze and red still clinging to the trees. One doesn’t need to go into the countryside, the parks and tree-lined streets and people’s gardens are places of wonder. We have several birch trees in our garden, several near the bedroom window, whose pale green leaves of spring are now the colour of copper. As I write this my eyes are periodically drawn towards them. This has been one of the loveliest autumns I can ever recall.

At Framlingham Castle

At Martello Tower, Suffolk, with Val and Chris

Down the garden path with Emma

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6 Comments

  1. Elleanor Morgan November 11, 2018

    An informative blog Bridget but I think you should have titled it “This is Me”! This has been a difficult time for you and you’ve embraced it with courage which will undoubtedly get you through the next phase.

    • admin November 13, 2018

      I have a hunch the worst is yet to come in terms of treatment. I need to hold that title in reserve. See you next week.XXX

  2. Steve Korbey November 11, 2018

    I am so glad we were able to catchup. Hopefully stem cells etc will be but a memory when we see you on our next trip.

    • admin November 13, 2018

      It was lovely to see you too. I am so glad that after you heart problems in the U.K. you totally turned your life around, pointing it in a new direction. With all this Brexit rubbish you really are in the best place. You never know, we may visit Canada one day and we may meet up in one of the fine hostelries I hear Port Credit has. Stay fit and keep smiling. XXX

  3. Sarah Donaldson November 11, 2018

    Wow Bridget … as ever so wonderfully written and explanatory … You certainly are living life to the full and with an attitude like that the good stem cells will feel right at home and give you a whole new burst of life!

    • admin November 13, 2018

      Thanks Sarah for your ongoing encouragement. I am not the only one reaping the very real health benefits of sing and tonic. After every session I do feel tired but I sleep better and do less puffing climbing stairs. Doctors ought to be able to prescribe choir singing for a wide range of conditions. I am not in this Wednesday as we are in Devon staying in another tower. It is very beautiful. A different large room on each of 4 floors and then a flat roof. The stairs are very good for me with a stout metal handrail. It is in a wood and is peaceful and relaxing. XXX

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