justanothermanictuesday

It's not Monday – The Bangles got it wrong

The long and winding road

Following my stay in hospital, it took nearly three weeks before I felt as fit as I did before becoming ill, which was already well down on feeling normal. I felt so totally exhausted most of the time, that even lying flat was an effort. Some days I made it downstairs once or twice, other days it was just too much. Martin worried about me on those days when he was working, phoning up every couple of hours to see what I was doing, which in truth was very little.

I am happy to report that I feel now back to normal, or what passes for normal for someone having myeloma treatment. I can now manage a few hours up and dressed and out. I can now go to my singing group, and even for a coffee afterwards. I can do a bit of shopping and can visit my colleagues at Women’s Aid. Meeting friends for lunch is also good because it is naturally time-limited, and I am sitting down. I don’t get overtired and I can go home to bed afterwards.

In mid September, my friend Elizabeth came to stay and we did various things, including a large basket of ironing between us. Luckily the weather wasn’t too bad, though one evening it was cold enough to light the wood burner for the first time since last winter. Elizabeth is very easy to live with. She reads a lot and largely entertains herself if I am having a bad day. She is also very practical and sorts out the little day to day jobs. We are old friends and it is comfortable having her around. Then Elizabeth left and my daughter Emma arrived from Greece where she lives. She brought with her some golden warm and sunny days, very much like Greece in late autumn. She has chauffeured me around to all sorts of venues and her being here has meant that Martin has been able to take a short break to visit his father first and then his best friend, both in Germany. Emma also came with me to my consultant’s appointment, armed with lots of questions regarding the next stage of my treatment.

I have now had 3 cycles of what is known as induction treatment for people who are going on to have a stem cell transplant. My consultant had told me previously that I would have at least 4 cycles, but in discussion last Thursday, because I am tolerating the treatment well, he has decided to give me 5 cycles altogether. This means that the last treatment day of my 5th cycle will be the 27th November. It is unlikely that there will be a 6th or more cycles as I have been responding very well so far, so this date provisionally looks to be the final date of the induction treatment, before moving on to the stem cell transplant process.

After the 27th November, I get a period without treatment during which a lot of other things are going on. Firstly, I get a chance to recover from the induction treatment and prepare my body for the next stage, but the main item on the agenda is the collection of my own healthy stem cells, ready to be returned to me at a suitable future date. This will be after a period of high dose chemotherapy which aims to wipe out any residual myeloma cells that are left lurking in corners following the induction treatment. Collecting the healthy cells takes place over two separate sessions, each lasting 4 hours. In order to maximise the number of stem cells available, growth hormone is given to stimulate cell production. The aim is also to collect sufficient cells for two separate treatments. The first to be used now and the other stored for possible future use, perhaps in several years time.

In the run-up to the transplant, I will also have to undergo a number of tests of heart, lung and kidney function to ensure I am fit enough for the treatment. There is a short waiting list for the transplant so all in all I will get a break of 1-2 months which will allow my body to recover before getting the very high dose chemotherapy, but it also means I get Christmas off! This is particularly good news, as my family all want to come to Birmingham and I will be halfway fit enough to enjoy them being here.

So far I haven’t lost my hair, but it seems I might with the high dose treatment. When Martin and I went to Morocco some years ago, knowing that it was very hot and we wouldn’t always be able to get a shower, Martin cut my hair very short with the clippers. A number 1 I think it was. Perhaps the best thing to do is cut my hair short first. I will ask my fellow cancer travellers for advice as to what they did. I am certainly not going to worry about it as it will grow back.

The appointment with my consultant was therefore very positive. A real sense of moving forward and the graph showed continued improvement in my blood picture. Emma asked lots of questions and wrote down the answers so we could absorb it all later. Plenty of reasons to feel positive. It has been wonderful having Emma to stay and we have tried to do something every day. Emma loves shopping and lunching and cafés and clothes. In Birmingham there are plenty of possibilities for this and so we have enjoyed quite a few. Needless to say that Emma arrived with a nearly empty suitcase and will go home with a full one.

A beautiful sunny afternoon, after a lunch out with Jerry and Leslie in Broughton.

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10 Comments

  1. Elleanor Morgan September 30, 2018

    This is all so positive Bridget and you can tell from your writing that is has given you a real lift. You also have Christmas to look forward to with all your family around you and to spoil you. “Love is All you Need” and the NHS of course.

    • admin October 4, 2018 — Post Author

      Yes Elleanor, the NHS, where would we be without it? XXX

  2. Beccy October 1, 2018

    I remember the pictures of the traveling hair cut and thought you wore it really well. It may give you a sense of ownership to cut your hair so it’s your decision not chemotherapy’s decision to have short hair. Whatever you decide knowing you it will be thought out and positive. So pleased you have a Christmas reprieve. X x x

    • admin October 4, 2018 — Post Author

      Thanks Beccy, the Christmas reprieve is so good as the Grandchildren are still young and can’t really appreciate that I can’t run around as normal though with a month free of treatment before Christmas I should feel reasonably fit.

  3. Sarah October 1, 2018

    Indeed Bridget how wonderful to have that positive information and feel you are moving forwards … brilliant you!

    • admin October 1, 2018 — Post Author

      Thanks Sarah, it was very good news and meant we could make some plans within the confines of the next few months.

  4. Jane October 3, 2018

    I am so impressed with your progress!
    A big THANK YOU to your family and friends for organising their time to be with you always! One can’t ask for more. As for me, rest assured you are in my prayers. My brother in law is going through some after effects of radiation treatment. I donated blood for him about a month ago. My sister says there’s great improvement. All the best to you both!

    • admin October 4, 2018 — Post Author

      Thank you Jane. Families and friends are so important during times like these. XXX

  5. Tina Hunt November 10, 2018

    It was good to see you at this week’s Sing and Tonic, Bridget.
    I want to add my wishes for an enjoyable Christmas when you will be surrounded by the strong and heartfelt love that only family and dear friends can give. Your positivity and strength is amazing! I’m so impressed (and humbled!) and know that your attitude will help tremendously in the coming weeks.

    • admin November 13, 2018 — Post Author

      You are right Tina, my family and close friends all have something in common and that is a kind of gritty determination to solve problems and make the best of adversity. I am very lucky to have them all. Sing and Tonic is so beneficial. Not just the singing which helps chest and breathing, but also the emotional release from the songs. I also think we have a wonderful group of people and I enjoy the cameraderie. XXX

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