justanothermanictuesday

It's not Monday – The Bangles got it wrong

The Rose

The change in the weather from a golden autumn to one that is grey and cold and damp, together with the shortening of the days, did not have a good effect on my mood. All of sudden I felt glum. Not sad, or tearful but melancholic. Reminiscing the past and feeling low. For a couple of weeks I could not shake it off then just as suddenly as it came it went again. I felt myself again and in control of the tasks I had set myself to do. My stem cell collection was looming, preceded by 4 days of hormone injections. I had asked what the effects of the injections would be, but I wasn’t really enlightened by the answers. Some patients feel they have ‘flu’, sometimes patients feel a bit ‘leaden’? (I wasn’t at all sure I understood what that meant). I reviewed my calendar and realised that one of the Sing and Tonic performances fell right in the middle of these injections. I was gripped by anxiety. I therefore eventually came to a difficult decision and that was to pull out of the performances for the rest of the term on the grounds that I might just not be able to attend at the last minute. I also found myself unable to practice much because of lethargy and during singing practice sessions my mouth got so dry despite constant drinking that sometimes I seemed to squeak! Sarah, our choir leader was most kind and understanding. It was arranged that I would continue to attend sessions when I could and attend performances in a support capacity only. Nevertheless the singing sessions themselves are really good for me and like a Physio workout with all the warmup and breathing exercises we do. I come home tired but relaxed and sleep well. My cancer consultants both endorsed the singing sessions as particularly good at maintaining lung capacity. In fact singing, although it does maximise lung capacity, also provides many more health benefits.

On the Thursday 29th November I started my growth hormone injections and for the first two days felt nothing differently. On the third day however I woke up in the night with sharp pains flitting in waves across my hips, then my back, then my head, then my shoulders. After about half an hour of this I got up and took some codeine and oromorph and gradually got back to sleep. This happened again on the Sunday night so I took the same pain relief which worked well. On the Monday I went to the Apheresis Unit for my stem cell collection and the nurse who attended to me told me that what I had experienced was a common response. It wasn’t very pleasant but at least it had only lasted a couple of days. The Apheresis unit is all part of the Haematology Unit. Staff from each area know each other well and information is passed around well so people know who I am. When we arrived at 8 am on the Monday morning, I was greeted by name at reception. We were told to wait awhile and various people who had had dealings with us in the past stopped to chat as they came in to work. It is actually very reassuring and comforting that people know us. On entering the Apheresis unit I was given a comfy chair and it was explained to me (what I had been told before) that collection of cells usually takes place over two days, though occasionally extending into Wednesday if needed. The growth hormone should have stimulated the bone marrow to produce a lot of stem cells, but another drug is sometimes needed to persuade the bone marrow to push these additional cells out into the peripheral circulation, so they can be collected. The first thing required was a blood test. This would take two hours to get the result and we could go off and get breakfast if we wanted. I was content to relax and people watch and Martin was armed with snacks, iPad and books. Fortunately for me, Martin had so many days holiday left that he would be on holiday for the whole of December. Great for me but not exactly a real holiday for Martin, in reality a Busman’s Holiday! I chatted a bit with the gentleman in the next chair who had come in from Worcester and was on his own and had been promised overnight accommodation. He was, I observed, not quite as well informed as we, but then I realised that he was getting his cancer care elsewhere and had only come to the QE for stem cell collection. I asked him when he would be getting his stem cell transplant. He wasn’t sure he said as his consultant had told him he needed to put on some weight first. Eventually the blood result came back and the nurse in charge was delighted. Apparently I had a higher than average amount of stem cells floating around so they soon linked me up to one of the Apheresis machines. A line goes in one arm from which blood flows into the Apheresis machine. Centrifugally the stem cells and some plasma are extracted from the blood, which is then returned into the other arm. Normal saline is used to prime the lines. Periodically the machine made little clicks and puffing noises as a few millilitres of cells and plasma were pushed into the various collecting bags. Someone came round with sandwiches and Martin fed me one, as I was not allowed to move. My neighbour had not enough cells available for collection that day so he was being treated with drugs to further stimulate the bone marrow.

The staff were very pleased with the speed at which the bags were filling and it became clear at some point during the afternoon that I might be able to provide enough stem cells in one day. At half past five I got disconnected and could get up and go to the loo. The senior nurse was certain we would not need to come back on the Tuesday but would phone us later to confirm, which she did. They had more than enough she said.

I felt incredibly tired. As soon as I got home I went straight to bed. Martin got some supper ready, for which I woke up and ate and then went back to sleep. On Tuesday I was still very tired and slept most of the day. On Wednesday I rallied enough to go to my singing group while it was Martin’s turn to go to the QE for an interesting day procedure. On the Thursday, another full day at the QE, partly on my own as Martin had a cello lesson in the morning. At 9 am I had lung function tests which are not much fun. You sit uncomfortably with your mouth clamped to a mouth piece performing various breathing patterns to gather quite a bit of information about lung capacity, elasticity and gaseous exchange. It is quite tiring but fortunately as I found out later, all was well and good for my age. Next on the list was an echocardiogram which was most uncomfortable. You lie, naked to the waist, on your back, on a hard couch with the head raised and then have to turn onto your left side and somehow maintain the position for 15 minutes by hanging on to a handle. Handfuls of KY jelly are daubed over your torso while a probe listens to your heart from various positions. It is distinctly unpleasant. My lower hip was in agony maintaining the position and my chest felt damp and sticky afterwards as it was difficult to remove all the jelly. Fortunately my heart looked normal. There followed an ECG to ensure my cardiac emptying rate was ok and as it was better than average my consultant, who I saw at the end of the day to confirm all this, was satisfied I would be fit for stem cell transplant. A roundabout date was given, just after Christmas, with a few hours notice. Admission would be for 3 weeks at least. I was consented and all the dangers of the procedure graphically pointed out. 50% of admissions do require blood transfusions and some people do end up on ITU. They have to tell you the down side but life is all about risk. If this works, which it generally does, I can keep well for up to 2 years at a time. Although there is a sobering aspect to it all I think it is more than worth it. The chance to feel really well again. To be able to work in my garden. To climb a decent hill. To be able to go travelling in the van or fly to Australia and New Zealand next winter. Just normal things in life.

On Friday we travelled down to Winchester for an overnight stay with friends Andy and Nicki. An evening by the fire with lovely food and some games of Brändi Dog afterwards. In the morning a walk round the water meadows behind Stockbridge with some retail therapy in the village followed by lunch at the John O’Gaunt Inn nearby. Lovely exercise, not too rushed and all on the flat.

Today is Sunday and we are back home and I begin to feel I am getting over the stem cell collection tiredness. I am looking forward now to spending the days with Martin and my family visiting me for Christmas. Hopefully we can fit in some little outings that the children will enjoy. I am pushing the thoughts of the stem cell transplant to the back of my mind for the present so that I can enjoy the here and now. We will face what is to come after Christmas when it arrives.

The song The Rose, which we are singing currently in Sing and Tonic, reminds us that life is about chance and risk. To live life to the full, one has to accept a certain amount of risk and take some chances. Without that, your life will be a pale imitation of what it could be.

“It’s the heart afraid of breaking

That never learns to dance

It’s the dream afraid of waking that never takes the chance

It’s the one who won’t be taken

Who cannot seem to give

And the soul afraid of dying that never learns to live.”

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10 Comments

  1. Budgie December 10, 2018

    All good news then Bridge!
    You and Martin have a great Christmas…x

    • admin December 10, 2018

      Thanks Budgie, so great to see you in Salisbury the other week. Have a lovely Christmas yourself. XXX

  2. Sarah December 10, 2018

    So glad “The Rose” and all our singing is helping you through this. But most of all, it is you, Bridget, who is doing so amazingly through these tricky days. I knew your cells would be good ones. I must teach you a children’s song, entirely appropriate …
    “Every little cell in my body is happy,
    Every little cell in my body is well.
    You can tell, every little cell,
    In my body is happy and well.”
    And so they will be …
    Sarah x

    • admin December 10, 2018

      Thank you so much Sarah for your kind words. There are only a few Myeloma cells left now. Hopefully the dose of Megazappo which I get in January will nuke them out of existence and the stem cells will turn into very happy white and red blood cells. I will then be able to sing the little song with confidence.

  3. Elleanor Morgan December 10, 2018

    What a fitting end to this incredible blog linked to our singing which I know gives you such an uplift. Your story is an incredible one Bridget, you haven’t allowed this condition to prevent you from activities that the fit and healthy would find difficult to maintain at the rate you do. On those days when you were feeling a bit low your focus was on treatment interfering with your family coming for Christmas, always thinking of others. And fortunately as the story has unfolded it won’t but your lovely girls didn’t care about that, they were going to be with you regardless. Remember what I said, “be kind to yourself”. You deserve it.

    • admin December 10, 2018

      Thank you Elleanor. Each day I am doing a few small jobs. Today I did our door wreath and put some loads of washing on and wrapped some presents. Tomorrow there’s a hospital appointment and then later we will do some food shopping. We are just keeping going slowly but surely. We are looking forward to Wednesday though!!! Probably not so many tasks, time for some fun. X

  4. Barbara Johnson December 10, 2018

    What an appropriate song, it brought a tear to my eye.
    And what a palaver, it’s amazing what these clever people can do to help make us better, who’d have thought it! Congratulations on your stoicism, hang on in there girl!
    Have a restful and happy Christmas and here’s to a successful and happy 2019 for you and Martin and your lovely families.
    Fondest love Barbara

    • admin December 10, 2018

      Barbara, thank you for your good wishes. It does seem quite a palaver as you point out. One has to ask oneself who thought of trying it in the first place. Not looking forward to it but concentrating on all the things I hope to do post April, like coming to 308 reunion. I have a list as long as my arm and hope to fill as many days as I can. There’s still so much I want to do. X

  5. Katie December 12, 2018

    Mum, you are amazing.

    Love you x

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