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.
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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 :)
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.....
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
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..
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.
Hello There. I made it home a week ago after 10 days in hospital. They let me home because I could get up and down the stairs at the hospital. However, they were an absolute breeze compared to the (much steeper) stairs at home! At home getting upstairs was fine, downstairs not so much, so I started using my bum to get down instead of legs. During those 10 days in hospital I appear to have lost all endurance or aerobic fitness as climbing those stairs initially was wiping me out.
It's been a big adjustment having to think and plan movement. Particularly moving out of bed, because of the fractured vertebrae my waist and middle are painful to touch. My right leg has been weak and cramps easily.
There are the drugs too, the side effects are a bit scattered but watching Teen Titans cartoons has been a bit psychedelic. I haven't had much capacity for concentration but this has been improving so I can read now and do the admin that’s required around all these changes in my life.
Over the last week my movement has improved a lot, much better on those precipitous stairs and getting up and down from chairs and bed. I have been doing a gentle breathing and movement practice, both seated and standing to work out the most appropriate way for me to do this. I am trying not to push too hard, which is easier said than done. I find that I am quite tired in the afternoon so I am trying to honour this.
Thursday was the end of my first round of chemotherapy treatment, so I have two weeks off which I would like to spend doing a bit more yoga. In my mind I would like to share some of this but I want to see how I go.
Because of the Myeloma I have shut the shop in Callendar Square in Falkirk and will not be doing massage therapy for at least a year.
I have contacted all my clients but if you have any further questions please contact me.
My intention here is to share what has been going on with me this week.
You might ask why I am doing this as I don't have to, but I would like you guys to know what has caused the changes in my movement patterns that you have observed over the last 5/6 weeks and the reason why despite the work I have put in there has been no improvement. The yoga rules 'yamas & niyamas' – mostly the 'yamas' – tell me not to lie and not to self-harm so this is another reason to share this with you. Further, by taking part in my classes you will unintentionally be a small part of the self-study and investigations I take part in to help me heal throughout this process so I feel you need to be aware.
On Sunday morning (5th July) I got up from a toe squat whilst feeding the cats when the muscles around my pelvis went into a huge spasm. I reached out to grab the stairs and get onto all 4s and crawled to lie prone. I was there for a while in pain and eventually realised it wasn't calming down and I was heading for shock and needed an ambulance. Gordon is not mentioned so far as I am very stubborn and at his point I knew I had to shout on him. He made me comfortable and phoned an ambulance, they turned up with gas and air to get me moving.
They moved me prone to supine using belts around my pelvis and a blow up seat to get me to 90°. At this point Gordon said he'd only heard women in childbirth scream so much. I got up from 90° to standing with less difficulty and shuffled out to the ambulance (a car was not a possibility as I couldn’t sit).
At the hospital I waited for 2 hours feeling my pelvis spasm before they started feeding me drugs to calm the spasms down. They gave me diazepam, dihydrocodeine, paracetamol, oral morphine and I was still in pain. At this point they decided it wasn't a musculoskeletal injury and they determined that I wasn't suffering an ectopic pregnancy. Next I was x-rayed and nothing was unusual and eventually I was admitted into a ward because of the pain.
By Monday 6th July they decided to check me for kidney stones via a CAT sca. This identified a growth on the L3 vertebra which was either going to be an infection or something a bit more "serious". Further CAT and MRI were done on Tuesday 7th to see if there was anything higher up. On Wednesday 8th they used CAT scan to take a biopsy and took some bone marrow. Thursday 9th they confirmed that I have Myeloma (info here https://www.myeloma.org.uk). Then on Friday I got a trip to the Beatson for radiotherapy to shrink my growth which will take a week.
I have caught up most of my closest besties and I apologize if I haven't and this is the first time you are hearing about this, it is not a personal slight.
My journey medically is pretty clear: chemo for 6/8 months then possibly a stem cell transplant.
The yoga journey is my part, the bit for me that I'm looking forward to and want to share with you. This is gonna look different and be gentler. Maybe we can work together and I can get some help with demonstrations? I will incorporate all the bits of yoga and other interesting techniques which will be FUN. I will work on my instructions and coordination.
I really hope you'll keep in touch and share with others who might be in a similar situation.
If you like I can help you with "1 to 1s" which will be talked through with lots of instruction, drawings and whatever resource I can play with to help you.
Any questions just ask x