I am sitting in my room, looking upwards to the sky, not a cloud….. Clear blue sky.
I love the summer, long days, light mornings and long evenings but realise by the time
the transplant is over and I can go home we will be almost touching the end of what seems to be a fairly good summer ( based on English standards )
Before I started treatment in the spring, my friend Fran suggested that I buy a plant for the garden that was low maintenance so I would appreciate the progress when I go home. Mum and I choose two clematis that flower throughout the summer. I thought this was a really great idea. I didn’t do much else in my little patch of a garden as it couldn’t be looked after. Yesterday, my neighbour and friend Brigitte sent me a little video of the garden which was great to see, in fact I have more going on than I remembered.
A dear family friend “auntie” Ruth sent me a poem she had written recently, it was all about her garden. As she looked around her plants she recalled how many of them had come from cuttings of people she knew…. Another great idea, I have primroses from my parents garden and snowdrops from William and Judith’s garden, neighbours of Mums. I think I need to expand on this idea !
So why am I writing about flowers and gardens….. Well this is the first year I haven’t worked, so I am able to watch Wimbledon with all the finely manicured lawns,
and also the Hampton court flower show starts today, of course all of this is covered on TV and for once l can watch it all !
So the progress report, I still have a chest infection which is not needed or wanted.
The doctors are doing everything possible to get this cleared up so I can have a bone marrow test …. I should then get a short break at home before heading into the final
round. As I well know one result determines the next and anything can change.
Thanks again for your support and kind words…..I do find it comforting as spending
Weeks in one room can give you cabin fever…… Thinking about it maybe that’s what I have 😉
I am into week four of this latest round, waiting for my immune system to kick start.
It’s rather like last time except that this time I have managed to have a couple of infections along the way which isn’t helping. I sometimes wonder how much information you might want to read or know, but I guess this is my journey, I need to write it down for myself too!
Yesterday evening I suddenly had a rigor, my temperature went sky high and I kept my nurse busy all night being put on all sorts of drips. This wasn’t as bad as my last infection and my temperature has now come down.
Unfortunately these infections are affecting my recovery and therefore delaying progress. Even though I feel, I am a well informed patient and have read all of the information, I was not mentally prepared for the long hospital stays, looking at the same four walls. I can’t help but think, all of this and we haven’t even got near to transplant. There are many types of stem cell transplant, this certainly seems to be
a lengthy treatment and I realise one has to be prepared to take several months out of normal life, probably counting in recovery time I would say a year. I have also learnt that there is no text book routine for patients…. Everything “depends” on what occurs at every step.
I did however have a big highlight this week. In my previous job I managed staff in Asia/Europe and they have stayed in touch during all of this. My then secretary, Marisa Set up a call with them, whilst they were in London. It was so lovely to have a chat and a little catch up, certainly a boost. I enclose a photo taken shortly before l left, what a lovely team I had the pleasure of working with.
I look forward to seeing them all again for a big social event !
It’s always good to be reminded that life carries on outside of this room, sometimes
you get so used to the routine you lose sight of normality.
Firstly I need to thank Heather for keeping the blog going during the past two weeks.
I am sorry that postings have not been regular, having managed my first session of chemo, this second round hit me hard. As you would have seen from Heathers entry,
besides coping with the usual known side effects I also managed to pick up an infection along the way. I didn’t want to see anyone, listen to music read or watch TV….
Hilary and Heather used all of their nursing skills on me and I am finally getting to feel better and much more sociable.
I was told that ( after the treatment) that the combination of chemo I have just had is particularly aggressive, well I would agree. I don’t need to go into all the details, but
If I have ever felt the loss of dignity and being in a very lonely dark place – that was the past two weeks.
The nurses on elf and libra ward have been wonderful…. Having being on this ward for a combination of 6 weeks they know me well. They have been “pep talking” me through this latest treatment as they know it has made me extremely worried about the the next stage and a further chemo session.
I went completely off food, I have had a nasty acid taste in my mouth, a combination of
Chemo and strong antibiotics . Funnily enough I have had a craving for fresh coconut and mango….. I must have been dreaming of past times in the Seychelles many years ago !!
I have even gone off chocolate, coffee and generally any good meal. It’s quite amusing
To me that I am now on”food watch” not usually something I have a problem with. Mind you …. I personally think I have plenty in reserve.
So what now….. It’s back to the waiting game. I need to see if my immune system kick
Starts again in the next two weeks. There could be two possible alternatives – one is I recover enough to go home for a couple of weeks, or if things do not go so well there
Is a possibility going straight into transplant. No guesses as to which one I would prefer.
In the meantime I hope to regain enough strength, come off the oxygen in Order to get out for a walk and some fresh air.
I woke this morning thinking I was at home as I could hear aircraft going overhead…..
Most disappointed to find myself in the hospital bed hearing the air ambulance.
It goes without saying that I really do appreciate your support, messages and prayers…..I have needed them !
Thank you Brenda
During the week we have seen a slight improvement in Bren’s condition . I’m pleased to say that her temperature is now within normal limits and her headache is improving. However, Bren is needing continuous oxygen which has been necessary for some days now. At the moment she can only be without it for a couple of minutes. It’s not too easy to get some real rest and sleep alongside having numerous infusions during the day and night, including regular blood and platelet transfusions, often having only a four hour window where she hasn’t been attached to an infusion. In Bren’s words she is ” totally exhausted, and not like Maggie Thatcher who could survive on just four hours sleep” – as you can see she hasn’t lost her sense of humour!
Hilary and l were able to visit together yesterday, it was nice for the three of us to spend the afternoon together.
Apologies for not being in contact since last week.
The last few days have been rather eventful for Bren.
Last Thursday we celebrated Bren’s birthday with a small tea party on the ward.
It was a good day. Bren enjoyed her chocolate cake and we were surprised by the nurses arriving in her bay to sing ‘Happy Birthday’ to her which was just lovely. They have all been great.
It was a birthday that she will not forget as it was also day one of her next course of intensive chemotherapy which will be given daily for five days – what a birthday present!
The effects of the chemotherapy started on Friday and Bren has not been at all well over the weekend. Bren has been experiencing high temperature, intense headache, nausea, nose bleeds and has has been off her food. We knew Bren was not feeling well as she didn’t want her coffee!
These effects have left her feeling very weak and she has been closely monitored by the medical team. Antibiotics were commenced and these were changed Saturday night. Chest X- rays and CT scans have taken place to try to find the source of infection which at this point is not conclusive. Bren has required several transfusions including further blood and platelets. It has been a difficult time for her. Hilary and l have been able to help with nursing duties and Bren has coped with this too!!
Yesterday Bren was a little better, it was the last day of the chemotherapy.
I know as soon as she feels able she will be in contact, just wanted to keep you up to date .
Thank you all for your ongoing thoughts and prayers.
At 9pm 2nd June I returned to Kings college hospital ….. I had been waiting for a bed for nearly a week, visiting out patients for regular platelet transfusions. The past few days I have been on tender hooks …. Wondering if I would get a call. It was hard to concentrate on anything, but every morning I enjoyed waking up in my own bed.
As Bridget and Heather escorted me along the corridor we felt it like we were going on holiday, roller bags in tow. For a few seconds we fantasied which exotic destination we were headed to, but gate 4 lead to Elf and Libra Ward which was where I started out in March.
How strange one quickly switches gear. I am sitting on my hospital bed with the same “arrangement ” on my table of water, mouthwashes,lip cel, phone and notebook. It feels too familiar – I don’t want to feel this at home when I am in hospital !
First crisis of the evening ….. Just about to change into my trusted M&S PJ’s when I spot another patient in the same ones….. We nearly had a clash of outfits…I quickly switched out to a different colour… Phew.
3rd June …. First full day where I am being prepared to start chemo tomorrow. It was a beautiful
Day so my friend Christine and I went for a walk in the park. We were enjoying the day when one of the catering staff passed me on her way to work and took my dinner order…..need I say more !
Hello, Heather here,
Last Friday l went up to Kings College Hospital for my medical. I arrived early to get my blood taken. The blood tests check for viruses and other diseases. I met the transplant nurse followed by my appointment with the consultant. He went through my medical history, examination and explained the process of stem cell collection including possible side effects/risks.
I then went up to the Apheresis unit (where the donation procedure takes place). The process is known as Peripheral Blood Stem Cell Harvesting and this is done by using a cell separator (apheresis) machine. Prior to “harvesting” l have daily injections for four days to help stimulate the production of extra stem cells. I met one of the nurses who explained what is involved. I will give you more details later…….enough medical info for today!!
As you know Bren is waiting to go back into Hospital for further chemotherapy. As l write l’m with Bren, she has just heard from the Hospital and there is a possibility that they will have a bed for her tonight, just waiting for another call to confirm.
Just heard this evening that a bed is available, so we are packing the bags and making the trip back to a Kings College Hospital.