What happens now?
And just like that I've been set free.
My second SCT has been cancelled due to lack of resource. It needed to be done within 6 months of the first (Tandem SCT) and they can't do it. I was upset and disappointed when I was told; I had been confident that having the second SCT would mean that I would see the back of Myeloma for a long time - although that is not necessarily the case. It's maybe the first time I've felt let down by the system. I know they have my back, I'll be monitored and on maintenance treatment so I'll be good, but having everything change so suddenly is not something I do well with.
Step one will be a second COVID injection and then I can plan what happens next.
Why I meditate
Meditation was something I did infrequently until last year, the reason for that was because I felt I got a similar feeling, quiet/stillness/being, from yoga asana practice. I started a more regular practice during lockdown 1 (remember we did this on Facebook together?). This practice fell to the wayside a bit when I became ill and ended up in hospital, mostly because I wasn't with it.
After that I started to practice again because my Myeloma diagnosis and shattered vertebrae led me to a more gentle yoga practice. I now practice meditation/mindfulness twice daily and have spent some time studying pranayama, meditation and mindfulness. The reason I have been doing it is that I feel it has added to the mental stability I feel I have already built from a regular long term yoga practice. It has allowed me to remain mostly positive about the Myeloma, vertebrae situation with just a few wobbles about the future.
What is mediation? For clarity: meditation is the practice that helps you learn to be present; mindfulness is the action of being present. I also like to think that as yoga asana is the practice of watching your body, meditation is the practice of watching your mind. As I understand it Meditation is about coming into stillness and trying to allow yourself to be present and in being mode as opposed to doing mode. You observe what is happening internally – discomfort in your body, how your breath is and how your mind is. Your mind is a bit tricky, however: there's a part of it that likes to distract you by chattering at you, reminding you of things you have done, what you need to do next and things you feel bad about. Remember yoga is described as reducing the fluctuations (chatter) of the mind. The part of you that observes this chatter could be described as the Self. The object of meditation is not to stop your mind from chattering but to be aware of the chatter and not react to it. Often we listen to these distracting thoughts and try to come up with solutions for them. This can cause mental and emotional pain and self-destructive thinking, however if we can observe the thoughts and give them some space and time they might solve themselves or even dissolve away. Practicing meditation means you can live more mindfully. (mindful is living in the present, meditation is the practice).
Thoughts can cause pain – self-induced pain – and the emotions these evoke can lead to self-destructive thinking. Meditation can help train the mind to be aware of these thoughts but not focus on them, to let them go and be in the present. With yoga asana you are observing your body, with meditation you are observing your mind. It can also help you understand the patterns of these thoughts and the impact of them. In this way meditation is beneficial to mental health, although if you have mental health problems and you want to try meditation it is better to find a professional for guidance.
Meditation is a practice which changes day to day. Sometimes it’s not easy to let the thoughts go and you start a dialogue in your head trying to solve things – it’s disappointing when this happens but I just let it happen knowing that it will be different the next day. I hope that you might be interested in trying meditation. If so: set a timer for a minute, sit comfortably, close your eyes, breathe easy and just watch what happens, this is the beginning of your journey. Try again tomorrow, the day after and so on and watch how your mind's wanderings change as the days pass.
Chemo Round 6 and the next steps
A very belated Happy New Year!
I finished chemo round 6 in January. Since then I have been trying to keep myself entertained by doing some very gentle yoga, reading (yoga books and books recommended by The Little Library Year), drawing and knitting. We go for a wee walk every day and see what's going on outside. Lockdown and lack of immune system limits what I can get up to.
In myself I'm generally feeling pretty good, if a bit sore and tired.
The chemo hasn't worked as well as the Drs would like (this is nothing to worry about) so the plan is to change my chemo and start it again later on in February. In the meantime they are going to collect stem cells from me, as the next type of chemo will damage my bone marrow cells. This treatment starts on Thursday, when I will start giving myself injections to stimulate bone marrow growth. This excessive growth will push stem cells into my bloodstream. I have been warned that this can be a bit sore. I'm hoping I won't have any of the listed side effects - pain, diarrhea and vomiting (yay). If enough stem cells are generated (fingers crossed), they will be collected next Monday (15th Feb) at the Beatson. The collection is done using a centrifuge; my blood gets pumped into the centrifuge which separates it into layers, the layer with the stem cells is kept and the rest is returned to me.
The collected cells will be frozen until transplant time.
One positive out of all this is I was eligible for the COVID vaccine, I received the first injection last Sunday with no side effects.
I hope the snow has been making you smile, I love watching the snow fall and watching the snow crystals sparkle in the sunshine.
That's all the news for now, keep warm and safe.
Chemo Round 5 and Lost in Lapland
Chemo round 5 has been more of the same. My eye got better and then flared up again, I've been on antibiotics solidly since then. We have since found out it appears to be a side effect of the treatment I am on (Velcade) as are the calf cramps I've been having !
I decided that this month I would do a wee sponsored challenge set up by Myeloma UK for Christmas, Lost in Lapland - Rallying Rudolph. The challenge is to walk 50km between the 1st-24th of December. 50km is about all that I can manage at the moment. Gordon and I go out for the walk together at lunchtime we have walked 20km so far.
You can donate my JustGiving page by clicking here:
One Saturday we went for a walk in the forest at Kincardine to see the autumn leaves. The next day my left eye was swollen. This is not unusual for me, it's happened before at this time of year and has been ascribed to an allergy to fungus. After a week of oral antihistamines and eye drops it wasn't getting any better (see previous post pic). Around the 10 day point I spoke to the Dr and was prescribed antibiotics, the next day my eye was beginning to weep and we thought it was best to speak to the cancer nurses. I sent them photos beforehand which they showed to the consultant. The consultant made the decision to pull me into hospital for IV antibiotics as they didn't want the infection moving back into my brain, understandable, which could have happened because I have "hee haw immune system".
After 3 extremely boring days in the hospital (although a slightly better week for food than the last time including teacakes!), I was freed with some tablets the size of bars of soap. I was also given an extra week off chemo and therefore was allowed off one of my treatment drugs for that week which means I can treat myself to a glass of wine or a gin!!!!!!!! Totally worth it x
Then they gave me another week off chemo because of the above and low white blood cell count. Fingers crossed it starts again soon otherwise I'll be getting chemo for xmas! I asked Santa for a new immune system :)
Chemo Round 4
Round 4 is done, which has been more of the same. I have recognised the pattern now: The first weekend is pretty unpleasant - this time it included sweats, which may or may not have been caused by a change in dose of painkillers alongside the chemo drugs. This side effect led to a change in my chemo dose during week two. The second weekend wasn't great fun either, as I suffered from neuralgia in my feet this made them hot and my legs sore. I also developed a swelling in my eye, this is something that happens occasionally at this time of year due to an allergy.
Besides that, I have lots of time at the moment, so my head is playing all sorts of games:
I know I am “ill” and should be letting my body and mind get better and be gentle with myself but my head is doing the thing where it tells me slightly unhelpful things. It’s telling me that I should be doing something with all this time, however I know that I can't work because I can't concentrate or move about like I did, which makes it difficult to teach yoga etc. I am reading but I don’t really take it in so there isn't a lot of point in learning a lot of information relating to yoga, massage or anything else. In the background my head is also assessing the impact of having a year off from my yoga classes, massage clients and everything else.
I also feel a bit frustrated at the loss of some of my independence, I can’t drive at the moment so I can't go places, not that there is anywhere to go at the moment. Gordon takes me to the hospital and other places. I go for the odd walk by myself and spend a lot of time by myself, which makes me a bit tetchy.
One thing I am doing is meditating most mornings to help deal with these unhelpful thoughts. I also feel a little more capable now, so I have been playing with doing more yoga... but this has led to a couple of sore days.
I do plan to use this time to do some knitting for xmas, which is also a meditative passtime, and hopefully I can quieten my mind and learn to be a little bit less rough on myself.
.This giant tome (200 pages) landed throught the door the other week. This is the bit that scares me slightly. I have a few questions.....
Chemo Round 3: Half Way!
Round 3 has been side effect bingo. With each round of treatment I have had different side effects, this time, on top of the being tired and pretty much suffering from constant indigestion, I have had peripheral neuropathy (tingly feet and hands) this feels like when pins and needles wears off but it lasts all day - now I know what nerve pain feels like. The side effects aren't regular either some days it's bad and others it's fine.
I've done some massage training this month too, I know now that I really don't have the concentration span to work, I found myself thinking about other things and missing bits but I was very aware of the lack of concentration.
On the positive side, I'm halfway through the chemo treatment, walking more and moving better.
Thank you to everyone who has sent lovely messages xx
Myeloma and the Immune System
I thought I`d explain a bit around Myeloma and how it has effected my immune system. I hope this will help people understand why I am shielding.
The immune system has a number of parts, the bits I am going to mention are the innate, which relate to white blood cells, and the acquired imune system, which comes from exposure to pathogens.
The only part that of the immune system that is effect by Myeloma is the acquired immune system. The acquired immune system produces antibodies that neutralise antigens made by pathogens. The antibodies are made by plasma cells. With my Myeloma my plasma is not making IgG antibodies which are the main antibodies that protect against bacterial and viral infections.
Therefore in times of COVID it seems sensible to keep away from any source of infection..
Chemotherapy Round Two Done!
Four weeks ago I finished chemo round 2, this means I am a third of the way through treatment!!!
What’s better since round 1:
Getting about: particularly using stairs, which I can almost do without a crutch. We’ve been doing longer walks, I take the crutch as I need it for a longer distance.
Sleeping: I can now sleep flat which makes a big difference.
Yoga: my practice is evolving as moving gets easier, I’m able to do some standing asana.
What’s not so great:
Saying to people that I have cancer, that gets a bit messy and snottery.
Side effects: I haven’t had horrible side effects, so far I’ve had swollen feet and ankles (very attractive), indigestion and sometimes I’m really tired.
Communication with the hospital could be better: there’s been a bit of confusion about getting my prescriptions and getting blood taken.
And me, I would like to feel “normal” again and not be achey and have to watch how I get around: I realised this time round that I am going to have to be careful until the growth has gone because it could damage the vertebrae again, that’s very frustrating. I’m not great at sitting round the house, I can’t get the balance of doing nothing/doing things right.
I am keeping myself busy making yoga videos, reading, knitting and watching the Gilmore Girls and Real Housewives. Any other recommendations will be gratefully received!
Useful stuff I have learned this time round: toiletries you might need for chemo
Round 3 has almost finished now, need to get faster at this.
Sarah Barron, founder of SMYL