Holidays, Treatment plans and celebrations

I thought I’d make the most of my hospital day to update my blog.

It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.

I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.

It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it 😉 ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.

The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!

While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/

What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.

This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.

Dexamethasone – The Devil Drug

My last post started to discuss the fact that life is pretty rough at the moment for me. It’ s been very different to when I went through treatment 9 years ago when other than periods of exhaustion, I didn’t seem to have any side effects from the early drugs. This time the devil drug, Dexamethasone (DEX) seems to have really hit me hard.

So what is dex? Well I’m no expert, but basically, it is a steroid that is meant to help to prevent the release of substances that might cause inflammation in the body. It also suppresses the immune system and can help with chemo-induced fatigue. The idea for me, is that it really supports the work of velcade, the chemo drug, and is thought to speed up the impact that it has, i.e bring my myeloma into check quicker, and my paraproteins down.

So that’s the good stuff that it helps with in cancer treatment. Unfortunately it also has a huge number of negatives attached with it, both physically and emotionally, that can cause a huge impact in patients….as I’m finding to my detriment. It can cause the following, just to name a few:

  • Mania – this can be a good sign in that you can end up with increased energy and due to not being able to sleep, can get lots done. The downside is that you often lose sight of reality when you’re going through this period, meaning you might make inappropriate decisions, say the wrong things, or even suffer delusions or take actions that you wouldn’t normally (apparently shop lifting is common – not me thank god!)
  • Depression – it speaks for itself, but even the days when you’re not on dex can be an issue as you’ve no longer got that mania, have spent hours (if not days) awake and then get the come down. Not pleasant for the patient or those surrounding them!
  • Impulses – lots of people talk about going on spending sprees when they’re on dex! I’ve managed to keep it in check thank god, but there have definitely been times where I’ve thought perhaps I can’t wait for that Breville toasted sandwich maker (after all who doesn’t need removable plates for the dishwasher – Cath I blame you!), or that after 20 years of making decisions with Nick about artwork, I can choose something without him!
  • Weight Gain – I swore this wasn’t going to affect me this time. WRONG!!!! OMG. Somehow I need to get back on track with it as it makes me miserable that I’ve put on soooo much weight in such a short time. Partially, it’s just increased water retention, but partly it is that no matter how much I say that bag of crisps is a bad idea, I still eat it…and then eat another pack! And top it off with a few other bits from the cupboard.
  • And then the general side effects: Aggression, agitation, anxiety, blurred vision,
    dizziness, fast, slow, pounding, or irregular heartbeat or pulse, headache, nervousness, numbness or tingling in the arms or legs, pounding in the ears, shortness of breath, swelling of the fingers, hands, feet, or lower legs, trouble thinking, speaking, or walking, troubled breathing at rest

I’m on a couple of Facebook pages where patients and carers can discuss and share information and Dex really is known as the most awful drug around. Even the consultants know it is the devil drug. Everyone who has seen it in action, knows how it can almost destroy some relationships. It is rare patients aren’t impacted (like me first time round). It is rare that families don’t see a different person in their loved ones. It’s rare that spare rooms don’t come into their own!!! It really is awful – no exaggeration if you’re thinking I’m over egging this!

Those of you that have been following my blog will know that I found my first week horrendously hard. It seemed to ease a bit after that and whilst I definitely had my ‘Jekyll and Hyde’ moments, they were pretty short and not too horrendous. But I’m definitely feeling that it is building now. I’m not sure whether it is that I have a ridiculous amount of stuff going on in my life at the moment (….I don’t really have time to have flipping cancer, let along a bad temper!). Or whether the drugs are solely to blame. Or whether I’m just turning into a miserable old cow in mid-life. But it’s not a particularly pleasant time and I seem to spend about 2/3 of my life not in a massively smiley place. I hear myself talk to friends and for once, can’t really put the positive spin on things while I’m on this drug. And I don’t like that much.

Living with being miserable is really horrid. I feel like a terrible wife and mother, despite Nick and the kids being amazing about it all – they couldn’t have been more supportive of me. I never take Nick for granted with this – he really is outstanding and no-one around us will ever know how amazing he is in holding the whole family together. But the way that the kids are coping really shows what amazing young people they are growing into. They support me, they love me, they cuddle me, and most importantly, they forgive me when I am just the most awful mother to them. And in return, all I can do is apologise and keep trying to keep myself in control.

I write all this though, with other thoughts in my mind. This is not an excuse for me. I don’t want to allow myself to behave badly because i have the drugs as an get out clause. I will fight really hard to be reasonable and thoughtful to the people around me. But in the same vein, if people who don’t know what is truly going on, start saying the only reason I get cross, or grumpy is because of the drugs and that my opinions aren’t valid, or true, or allowed, that will drive me round the bend. The drugs don’t impact me 100% of the time, and especially with longer term values and morale issues, my views are still valid!

I hadn’t realised that when I go to daratumumab three weekly, I still had to keep having the velcade and the dex every week! Gutted doesn’t begin to explain how that made me feel when I’d been counting down the days to a more normal existence. So, I’ve decided that I am going to speak to my consultant when I go in next week. I’m going to see if we can reduce the dexamethasone slightly if my numbers are still looking positive. Just a bit. Just to ease the impact and hopefully allow us a slightly more pleasant run into the time of my transplant. My paraproteins are currently down at 12 so I’m hoping they might have dropped under 10 by next week and he’ll be happy about doing that.

OK, so I’ve finally finished this post because it’s a Dex day…..I started it 5 days ago! So the two manic days or in process now…might sleep a couple of hours tonight, might not. But at least I’ve finished this and can move on to a bit of my work….massively behind at the moment while I’ve tried to fit in other stuff like house, family and friends. But Monday’s at least are my catch up night…there’s a positive to end on!

Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

DVD – Day 8

So I’m back into hospital today for the next tranche of Darathumabub, Dex and Velcade. It should be a much quicker experience this week and whilst last week was two days of 9 hours, this week sounds like it’ll just be one day and that whilst there’s the usual hours of hospital ‘waiting around’, the actual infusion should only take around 3 hours. I’m assuming that won’t lead to extra symptoms, but will know later I suppose!

In terms of the ‘Dex effect’, last week calmed down a little after my last post. I was still a bit more emotional than normal, but felt so much more like my normal self which was such a relief. I managed to do some gardening on Saturday (with everyone checking in every 30 minutes asking if I was overdoing it!), and went to visit my dad on Sunday which I was so relieved to do.

It’s been hard knowing that he’s in hospital at a time that I can’t be there to support him. He’s had the operation on his leg and that went really well, but he is very confused, can’t really put a sentence together any more, and most worryingly for me, doesn’t seem to have any drive to get up and walking. They think he could walk again if we can get him past the mental barrier / pain that he currently has stopping him. Interestingly, they think that his dementia may be influencing the pain and that whilst healthy patients would fight through the pain, when you have dementia, apparently it can stop you from being able to do this so well. The next week will probably be a big one in terms of how things progress or otherwise.

So I’m trying to get myself ready for the week to come. I think I might take myself off social media from tomorrow night for a couple of days while I deal with the potential dex side effects but I need to find a way to make sure I’m good for the weekend. Rebecca is doing her 3 Peaks to raise money for her to go to Romania.

I’m so proud of her as she hates walking so it really is a big thing for her. She’s got to raise over £1800 so hopefully this will help her a lot. But it means I really want to be there to support her. I have admitted to myself that walking 26 miles up and down mountains, probably isn’t the most sensible thing I could be doing but I do want to be able to support by taking them, collecting them and maybe doing some of the easier walking bits alongside them. So, keep your fingers and toes crossed that the end of this week is as good as the end of last week so that I can do all of that…..oh and I need to visit my dad on Friday too so that I fit that in!

Right, I’d better go and do some work now while I’m waiting for the dara to arrive….

…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

Week 176 of chemo complete: My 3 options when I need to change treatment

In March my Myeloma Specialist/Hematologist provided me with 3 options, should we need to change my chemo. My current treatment is Pomalyst + Ninlaro, which are chemo pills. At the time, my cancer levels (m-protein) had been stable for the previous 3 months at 13. Last month my cancer levels spiked from 20 to 25.

This knowledge was very much appreciated as it allowed me to leisurely think about the advantages and disadvantages of each, without pressure. I feel better prepared and confident that when necessary, I’ll make the right decision – in consultation with my Myeloma Specialist.

Option 1: Velcade (high-dose chemo injections) + Cyclophosphamide (chemo pills) + low dose Dexamethasone (steroid pills)

Advantages:
Back in 2013, I had 9 months of treatment followed by 8 months of complete remission, meaning my myeloma was undetectable. So Velcade had previous success.

Disadvantages:
Velcade excited the myeloma cells in the bone marrow of my t7 vertebrae causing immense pain as it slowly collapsed. Although Velcade shortened my height, I feel fortunate not to be paralyzed.

Treatment Setting: Hospital

Option 2: Pomalyst (chemo pills) + low dose Dexamethasone (steroid pills)

Advantages:
This was my treatment from Feb 2015 – July 2017. I believe this combination is likely to lower my cancer levels and keep them low and stable, because that is what was happening before we stopped Dexamethasone.

Disadvantages:
Recall that I was on Dexamethasone with my current Pomalyst treatment from Feb 2015 until July 2017. My Myeloma Specialist stopped it after my Glaucoma Specialist found that Dexamethasone increased my eye pressure. I was prescribed eye drops, which have kept my eye pressure normal, however the Dexamethasone caused right eye damage. As my eyes are steroid sensitive to Dexamethasone, renewing this treatment could result in further eye damage. I would have to find an Ophthalmologist to monitor my eye pressure monthly.

Treatment Setting: Home

Option 3: Pomalyst (chemo pills) + Darzalex (high dose IV targeted treatment)

Advantages:
I would remain on Pomalyst, which doesn’t seem to have any major side effects for me. Combined treatment may be more effective that just Pomalyst or Darzalex alone. As targeted treatment (this is a monoclonal antibody), Darzalex attaches directly to my myeloma cells to kill them and/or allow my immune system to destroy them. This option would be an opportunity to try something new and different.

Disadvantages:
It is unknown what side effects I may experience and there are always general concerns with any IV treatment.

Treatment setting: Hospital

Everything is going to be alright. When I think positive, positive things will happen.

Photo:
These fruit represent my 3 treatment options. The Granny Smith apple is Option 1. It is a common fruit that I’ve had before. I know what I’m getting and what it tastes like. Similarly I know what Velcade + Dexamethasone treatment will be like and the side effects I should experience.

The navel orange symbolizes Option 2. I’ve eaten navel oranges before and know how they taste. Comparably, I know what to expect from Pomalyst + Dexamethasone treatment and the side effects likely to occur.

Option 3 is the Asian pear (front). I have never had an Asian pear before so eating one would be something novel. It is a different colour and shape from what I’d expect a pear to look like. Likewise, Darzalex would be a new experience for treating my multiple myeloma.

Week 176 of chemo complete: My 3 options when treatment change needed

To recap: On Sunday, June 24th, I completed Cycle 44 Week 4. I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and Dexamethasone chemo treatment (Pom/Dex). On July 16th 2017, my Dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use. On January 9th I began Ninlaro chemo to combat steadily rising cancer levels.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

No lawn to mowMay 2014: Coal Harbour – Vancouver

The post Week 176 of chemo complete: My 3 options when I need to change treatment appeared first on Fade to Play.

Wow, It’s Been A Long Time!

I’ve started writing on Medium.com which means I’ve stopped writing here.  In addition to that, I was cancer free from my transplant till my 5th year anniversary – almost to the day.  With that said, below area  few links to my most recent posts on Medium and here is the text of my last post on Medium.  s always, thank you for reading!

It’s Not The Chemo…
Fighting Again…
My Re-Birthday

It’s Not The Chemo…
The last few weeks have been a roller coaster. There are a number of things being juggled right now but the funny thing is, it’s not the chemo that’s causing a concern. Sure, the disease is back, I’m back in treatment, but that was the least of my worries. Here’s my most recent timeline, so you can get caught up on the craziness:
  • Feb 7 — The decision is made, my January biopsy and blood work identified that the disease is definitely back and it’s time to take action. Feb 28 is my first date for treatment.
  • Feb 23 — I get an Explanation Of Benefits, via SNAIL MAIL, from my insurance company that the treatment plan has been denied as “not medically necessary” (again, treatment was scheduled for Feb 28 , 5 days later— so I went and got a tattoo!)
  • Feb 26 — I am told I will be on a clinical trial, but will need tests first, so treatment will start Mar 8.
  • Mar 2 — a littany of tests: echocardiogram, EKG, skeletal X-ray, bone marrow biopsy (again), blood work, urine, etc.
  • Mar 8 — I arrive for my first day of the clinical trial. They insert the IV and then the NP tells me I was denied the clinical trial — I am “relapsed” not “refractory” — this is a good thing but it didn’t feel like it at the time.
  • May 8 — I raise holy hell!
  • Mar 9 — I begin a “standard of care” treatment that is easily approved by insurance and start day 1 of my Daratumumab and Velcade immuno- and chemo-therapy regime.
Honestly, the chemo has been fine but the roller coaster of emotions and decisions over a three week period was simply mind blowing. Unlike the chemo that many others take, where they are sick for days or weeks after, the side effects for me have been minimal. That being said, the Dara is closely monitored for the first two sessions as it will cause allergic reactions. My Day 1 had an arrival to Mt Sinai at 0750 — my departure — at 2134 (for those not accustomed to military time 7:50a to 9:34p). I gave up Lent after that and had a beer — i’ll make my peace with the big man above!
Every time I had an allergic reaction they had to stop the infusion, give me something to address the reaction, and then wait 35–40 minutes for that to kick in. Then they re-started the infusion, at a very minimal rate, to see if the reaction returned. I had two reactions with the second being in the early afternoon. With 700ml of Dara remaining, they re-started the infusion with the rate at 25ml/hour. If we were doing 100ml/hour that would be seven hours! It took an hour at 25 till we could increase to 50. An hour later we increased to 100, then 150 then finally 200, the max. It was a long day.
Day 2 (which apparently is Day 8 in treatment-speak) was easier and I had no reactions. Still it was from 0700 to 1720, so a long day! This week I had my first real side effect, which was simply an achey feeling. It was like the flu without the flu-like symptoms. Moving just ached — the shirt moving on your skin didn’t hurt but it was sensitive, like sun burn. The docs gave me Dex, which did help, but caused me to not go to bed till 0100 last night (this morning) and I was up by 5 with one time awake in between. The only other side effects were caused by the Velcade. The Velcad is delivered sub-cutaneous, a shot that goes into the fat in your belly, just under the skin, but before the muscle. The first one left me with a bright red mark, that was hot and did hurt like sunburn. Not bad but noticeably irritating. The second shot had a similar reaction but not as bad. I’ve used Aquaphor to keep the area from getting too dry.
Day 3 is tomorrow and should be quick (relatively, but still guessing around 6 hours). That is my update. Thanks for reading and I’ll have an more info on everything else in the next day or so!
Cheers and keep fighting!

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
…………………………………………………………….

This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

Dom is a Hurtin’ Little Cowboy

Well, gang-  This Velcade/Revlimid treatment has really clobbered him.

Over the course of 8 days, he was admitted to 2 separate hospitals overnight.

His neuropathy started traveling up his legs, just below the knees.

He gets extremely dizzy and almost falls down.

Blood Pressure is either very low or slightly elevated.

He’s seeing flashes of light.

He’s now walking with a walker.

His hands are starting to go numb.

You get the idea-  he’s a MESS.

So, his Slidell Oncologist took him off of Chemo.

We’ll be heading to Tulane Cancer Center soon.  We have an appointment for the 31st, but they’ll probably want him in there sooner.

(Thalidomide was like a walk in the park compared to this treatment!)

A Dom Update – Bed during the weekend, then back at it.

He had been feeling very weak and woozy since last week.  He basically spent the weekend in bed.

On Monday, we headed into Bogalusa to have his weekly blood work done.  I dropped him off at the door to shop and returned to find out that he couldn’t make the walk to the lab.  They kindly gave him a wheelchair.

Yesterday was a FULL day.  He had an MRI appointment at 11:30 at the hospital.  Then, the Cancer Center nurse asked us to come right over.  She had looked at his blood work to see that his Potassium was way down.

So, he got his Velcade injection, followed by a 2-hour infusion of Potassium and liquids.  (Saline)  Our Oncologist was on vacation (again), so one of his associates gave him a prescription for daily Potassium supplements.

He felt GREAT last night.

He felt GREAT this morning.  Got out of bed, made his own breakfast, watched television, then got up, started to walk and got dizzy.

There’s no doubt that his blood pressure dropped and he was too much in a hurry to get moving.  So…. he’s promised me that he will sit for awhile.  Slowly stand for awhile.  THEN walk.

So, this is all very frustrating, but we seem to be getting somewhere with the Potassium and Fluid infusions.  And happily, there seems to be a better communication with his health care team.

Back to the Cancer Center on Friday morning for Velcade, then he’s got the next week OFF.  YAY!