Updates from Rob:
Note: Headers are collapsible, just click the arrow to the right of the title to expand and read the update.
Long time no update... - 13/08/21
Author: Rob Allen
It's been a long time since I've gave an update on my situation. Since the last time I have had 2 cataract operations, one was done over a month ago and has healed nicely, the other one was done earlier this week so it's quite hazy still. The unfortunate thing about cataract ops is that on the NHS they can only replace the lens with one that has one range of focus and most of the time unless requested otherwise, they set you up for long range vision, which means you can see when you're out and about or driving. You can also see close enough to see the speedometer. Any closer than just under arms length though and it starts to get blurry quick, I can't read my phone at all, by the time I put it in the viewable range, it's too far away to see anyway.
It means at the moment I'm popping my glasses on every 5 minutes to see my phone or do something in the kitchen, then back off to walk around or watch tv. I bought some temporary reading glasses as they were cheap, that's what I'm using now until after 3 weeks from my op have passed, then I can get some varifocal glasses, which are not the same as bifocal. Bifocal glasses allow you to see two fields of vision, close and far. Varifocal glasses have all of the ranges in between, so you never need to take off the glasses to see at any range.
I'm really looking forward to that as this is annoying and 4 weeks (by the time I get my frames) is quite a long time to wait having to mess about with glasses putting them on and off all day.
Moving on, I tore my tendons in my thigh, probably quite a few of them as it seems to be painful all the way around the front and both sides of my right thigh, it's so bad, most of the time when I'm out and about I have to take crutches and sometimes even when I'm in the house. It must have been about 8-9 weeks now and I'm still in agony, Doctors feared it could be brittle bones from the steroids I've been having which apparently is common and I likely do have, so they did an xray to check for breaks or fractures, they found nothing, which is good, then they did an ultrasound scan of the muscle and they only found what looked like an older injury, I'm guessing the equipment they use can't spot tendonitis as they just assumed that's what it is, which is pretty much just inflammation and/or tearing of the tendon. On top of the above, my restless leg syndrome has gone berserk and causes the most violent spasms in both my legs now, that is how I hurt my leg too. All of the above including the spasms are all related to the steroids, wonderful drug...
That's the rubbish stuff out of the way, and now for some good,
We had booked ages ago to go stay in a caravan in the lakes for a few days, it would be Hugos birthday, yes!! Hugo is now just over 1 year old!! We all had a lovely holiday. I know I may be an unlucky cancer riddled man with the worst health possible, but whenever I go somewhere for a break, the sun comes out to play!! We also had a little socially distanced birthday party in a local park and invited friends who have children, they couldn't play together but most of them were toddlers or young kids, it was a lovely little day out.
We do plan to have another few days away later in the year hopefully. I have spend the last 8 weeks or so including our time away hobbling around on crutches, it doesn't seem to matter how much I relax and take my weight off it, it never seems to get the slightest bit better, but I'm really hoping it will be better before the next time we go away, so some things to look forward to... Varifocal glasses and a leg that works properly.
I have also lost quite a lot of weight, mostly due to me starving because the steroid withdrawal makes me feel so sick.
I'm now around 12 stone 13lbs, when I was at my heaviest I was around 15 stone 6lbs, which is great, I think if it wasn't for this dodgy leg I could be a lot more mobile.
I keep thinking of extra things to add...
My cardiologist who has been giving me ace inhibitors has managed to achieve a slight increase in the function of one of the chambers of my heart that was damaged by the treatment. It is now pumping at 46% efficiency, I think it was around 44% previously, which his a good improvement because a healthy persons heart should pump at 55-65% efficiency.
That's all that springs to mind for now, but thanks for reading, if you can, spread the link to the website so people can see the journey and the battles. :)
Here are some lovely recent pics of our massive baby.
Was this the end?? - 24/04/21
Author: Rob Allen
Since my diagnosis of CMS AML (Basically AML which has migrated into my spine and which is incurable) I have had numbness in my left foot, it had spread following diagnosis to my other leg, pretty much making everything extremely weak and numb below the waste. In time I have had a lot of intrathecal chemotherapy (chemo in my spine) and my spinal cord has had a chance to recover, this recovery has been going on over a year now, but they are confident it will eventually become resistant to the chemotherapy and come back in force.
Well 3 weeks ago or so, there were clear signs that it was. It began with a hot burning feeling in my left lower leg, it went on for days and I hoped it would go away. It didn't go away so I got in touch with the hospital and they arranged an MRI which took place about a week and a half ago. Whilst waiting for results, the warm feeling had spread up my leg, across my bum and to my other leg down to my other foot, then as time went by it spread to my chest, hands and face.
I scoured the internet for all the possible things it could be, hoping it might not be the cancer coming back, but everything I read pointed to a problem with nerves and since this was all over my body, it was highly likely that my spine was the problem and we already knew that the cancer would do this to my spine and nerves eventually.
We spent the last 3 weeks feeling extremely worried that I'd die soon, and not quick enough for my liking, it would take a few month at least of me being paralysed, someone having to look after me, feed me and take me to the toilet etc. I'm not a huge bloke, but I am heavy from all the weight I'd put on from steroids and my wife Kimberley is only small, so the idea of lifting me around, helping me shower etc seemed impossible to imagine.
We spent our time worried about what we would do and so we called Macmillan who pretty much told us that because Kimberley works, there will be no help for us unless we pay for it, they said effectively that her earnings would be taken away from her so that they could fund someone coming round to look after me, they also said that I wouldn't get help with the costs of fitting a wet room in preparation, it would only be if I needed one there and then, but by the time they fit one I will have went weeks or months without one and won't be able to bathe or shower. So essentially, if we want a wet room fitting in time for me becoming paralyzed, we will have to some how fund it ourselves.
We have a just giving page, but the money our friends have raised for us will only stretch so far, it could cost £5-6k for a funeral alone and it will probably cost a lot of money, maybe £5k for a wet room, I'm not sure, but I don't think that will be cheap. There'd be a need for ramps on the door steps for my wheel chair as all of ours are raised and have a large step.
Something I never thought of too, is help for our little boy when I'm gone, in case he needs some kind of counselling to help him cope mentally with the loss, my wife will no doubt need to take a lot of time off work and lose money there too, it's insane how much of a worry the costs of things are.
With that aside, my wife's birthday fell in the middle of this terrible 3 weeks of stress and upset. There were a lot of tears and I've lost weight because I can't eat when I'm stressed. Something to remember is that when someone is extremely ill or terminal, it's not just them that's suffering, it's all those around them and all those that care for them. I know I shouldn't feel this way, but I felt guilty that I was ruining her birthday, you can't help feeling that you've ruined your partners life when you're in a position like this, being looked after by them at their expense. I should have been working, bringing in a wage, we should be able to buy things whenever we feel like it without worrying about if we can afford it, I shouldn't have to sell my car, I shouldn't have to think about the fact that I'll never 'change my car' again when a friend talks about changing his, or if I'll ever make any big spends to treat myself for the rest of my life, also I'd probably spend a lot more on my wife if I was working when her birthdays come around, now I've had to rely on trying to be extremely thoughtful to make up for it. I was a bit crap this time round because I was feeling so ill, I didn't even wrap her presents and her birthday fell on a day that was tainted by how upset we felt.
We had already been to hospital last Monday to ask if the results for the MRI were in and if they can do any other tests to check for other possibilities, unfortunately the doctor didn't think to test for anything else and just said we should wait for the MRI results, she said mine could be rather complicated with my condition which made us worry even more.
Since Monday it spread further and the pain got worse until I could hardly get to sleep because it hurt so much. So Thursday morning I asked if I could come in and see a doctor, this time I saw a consultant that I was familiar with, I suggested Diabetes or that perhaps the chemo was eating away at my spine and asked if he could perform more blood tests to check for other possibilities, the MRI results still had not come in, so it wasn't clear to him what was happening. He said he would chase it with the doctors who review the images and get back to me. Kim, Hugo and I left for home feeling no better than before we went there. We came home and popped the BBQ on as we had Kimberley's parents with us (who are our support bubble), but it was hard to raise a smile.
The phone rang, it was a withheld number, I answered and it was the doctor, he sounded quite chipper, but to be honest, they always do, as if they switch off their emotions for work. He went on to tell me that the MRI results had returned and that they had improved so much, that they are actually in a normal healthy range, this indicated that although the cancer has not gone and will eventually come back and take my life, the cancer wasn't doing this damage. He told me that he and another doctor have discussed the details and believe the chemotherapy that they have been injecting into my spine has damaged my spinal cord, but because currently, my spine is looking in good shape, they can afford to stop the chemo for a number of months before the cancer takes a hold again and then there will be a chance that they can still fend it off with more chemotherapy for a while. I'll still be in pain, but he's going to send me some special pain killers for neurological pain. Following that news, we were able to have a much nicer day and enjoy the BBQ and we have picked up quite a bit since those horrible 3 weeks. I think I can cope with the pain as long as I know that it's not a sign that I'm about to pop my clogs.
Since my last update, our little boy Hugo has turned 9 month old, he's a big heavy happy boy now and has even began to crawl, I don't think at this rate, it will be long before he is walking, he is getting up to all kinds of mischief.
I've popped some photographs on of us, we managed to get out for a short walk in a park on a recent sunny day, the pain that I was having flared up massively afterwards, which did prompt additional phone calls to the hospital, but it was nice to get a few family photographs and some fresh air and sunshine.
Instagram and Twitter - 28/02/21
Author: Rob Allen
I've now created an Instagram and Twitter account, so if you have those, please add my pages, the links are...
In relation to what's been going on with me, I've recently changed a drug that protects me against bacterial gut infections from something called posaconazole to Itraconazole, it seemed to coincide with Brexit, so perhaps they can't import the original drugs anymore, I've increased my heart drugs, which I think reduce my blood pressure to ease the strain on my heart and they've decreased the blood thinners to a maintenance dose.
Since then, the water retention on my legs has came back and my left foot feels odd, partially due to spinal cord damage and the water retention. So they're having me in tomorrow to examine me and discuss a way forward, it's difficult when they change so many drugs at once because it's hard to find out what it was that caused the problem. Apparently, my last set of bloods showed poor kidney function and lower calcium than what is desirable, so I think I'll need to discuss that with them too. Certain drugs cause your body to get rid of certain minerals and vitamins, so it could be all drug related. I felt like I was getting a bit better on my legs and that the pain was subsiding, but now it's back again, so it's took the wind out of my sails.
I tripped on the dish washer door yesterday as our kitchen is quite small and it was all the way open, I was trying to empty the dish washer, I hadn't noticed, but due to my thin skin (from the steroids) and the blood thinners, I managed to cut my leg open and bleed quite a lot.
Some lovely baby pictures and a picture of my war wound for you below. :)
Progress - 06/02/21
Author: Rob Allen
I'll start this post by saying, it's now been just over a year since the doctors told me I have incurable spine cancer (CNS AML), at which point they couldn't even guarantee that I'd meet my baby in July, but here I am 1 year down the line, I didn't just meet him, I've helped mould his personality and made some lock down memories with him, he even spent his first Christmas with his daddy. :)
I remember seeing the "Facebook Memory" of my diagnosis, I remember immediately thinking "Oh, well that's a year gone, how much longer do I have? Do I have another year in me or just a number of months?" , but when I mentioned seeing the post to my wife Kimberley, she said it's a positive that I made it and that I'm still here. I always try to choose the positives over the negatives and when there's hope, I try to focus on the positives of what hope has to offer, but I can't help thinking this time that I can't really hope for much, other than a miracle. My friend always tells me that she's looking for her magic lamp or wand or some crazy shizzle, if only such a thing existed. Just the other week my wife bought a full chicken which she cooked and dismantled, I found the wish bone and we pulled it to make a wish. I won, I won't tell you what I wished for, because I heard they don't come true if you do, but it's probably easy enough to guess.
It's been a while since I did a blog and a lot has happened. Just the other day for example a podiatrist visited me to sort my toes out, due to the water retention my toes and feet had swollen daily into my shoes, squashing my toes together and giving me in grown toe nails, I couldn't see what had happened, but she managed to pull a chunk of nasty nail out of both my big toes giving me instant relief from the pain, it will have to heal a bit, but shouldn't take much longer than a week or two. So that's one of the niggly jobs out of the way. I'm still waiting to have my cataracts removed, still no news on an appointment for that, but the doctor who specialises in cardiology has given me ACE inhibitors, which I believe reduce blood pressure and he thinks it will give my heart a chance to repair if it possibly can, but he said if it doesn't help improve my heart function, it most likely will at least stop any further damage, so that is good news.
Oh and I have seen an ENT specialist, I've had a CT scan and MRI scan of my sinuses, which showed inflammation but no sign of infection, so they gave me steroid drops and a nasal douche kit amongst other things, but they made a mistake on the prescription and only prescribed 1 of 6 weeks of drops, I called them before I started the first week and they said they'd get the rest delivered, so I've done 1 week of the 6 and had a weeks gap now because the idiots still haven't had them delivered, I'll have to chase them on Monday, now I'm wondering if I will have to start the 6 weeks over or whether I can continue with the week gap, I feel like they've ruined my treatment, there always always seems to be a mistake with pharmacy these days, sometimes the doctors miss things off my prescriptions, or sometimes it could be that the nurse hasn't relayed them all on to the doctors, I don't know which is happening, so I end up travelling all the way through to Newcastle to pick up a prescription, then when I check them against what I ordered there is some missing, so I have to order the remaining and have another trip to Newcastle to pick them up, I've lost count the amount of times this has happened, then other times I'll pick the meds up and go home and there'll be something missing, I'll call up and they'll tell me the drug has been discontinued or they have manufacturing problems, funnily enough it seems to coincide with Brexit, so I bet the cost of importing some drugs has went up so they're probably not importing them anymore and looking for alternatives.
Anyway, this again results in me not only making multiple journeys to pick up drugs, but also I have to speak to the doctors to arrange alternatives and it often results in gaps in my treatment. One of the drugs that they're now unable to get is oral testosterone tablets, my testosterone was depleted due to my treatment which is common and I was feeling rather depressed which is a common side effect, so instead of giving me an alternative they just left it off, I had to phone them, honestly, it's as if I have to sort my own care out sometimes. I had to speak to the doc to discuss alternatives and I told them I knew there was a topical gel that I can use, so they agreed to prescribe that. They also tell me they want to monitor certain bloods such as Us and Es or testosterone, then they don't arrange for the bloods to be taken on my next blood test, so I have to ask for the extra bloods each time I visit or they don't get taken.
My wife is back to work now following her maternity leave, so we're struggling a bit with regards to having her working and looking after a 6 month old baby, but I've got a little bit of strength back, so can at least walk around a little bit, some days are better than others, but having a child whilst you're fit and well I imagine would still be quite a task. We've started weening our baby now, which is slow going, but he has the odd little bit and he's also teething now, which is nice. I've also received a letter through the post to say I will be getting vaccinated for COVID soon as I'm in the clinically vulnerable group.
Fixing a broken heart for Christmas - 22/12/2020
Author: Rob Allen
I received a call today from a cardiologist, I was referred to them by my Oncologist after the damage that the treatment has done to my heart. I was told by the doctor at clinic that one of my chambers in my heart responsible for pushing the blood around my body is damaged and is operating at 44%, when a healthy persons should be 65%. I remember being rather upset by the news and spent the rest of the day sulking at the time, following that I had the great news from one of my Doctors that there is a heart specialist who potentially can help restore some of the strength to my heart.
Today that Heart Specialist called me and discussed my condition with me, first of all, he said that a healthy persons heart should push 55% of the blood out of the heart and not 65%, so that means my 44% isn't quite as bad as they'd thought.
He also said that he can prescribe a drug, which he is going to send out for me which will lessen the strain on my heart and will hopefully give it a chance to recover, he said I will be on the drug for life but there is potential to restore some if not all of the heart function. He said that even if it doesn't work to restore the function it will at least protect it from further damage. He said that moderate exercise is fine, but he said the heart isn't a muscle like others and you can't strengthen it with exercise, but the exercise will be good for my strength and fitness as it will improve the efficiency of my muscles and reduce the strain on my heart. He said that even a healthy person should not really exercise too heavily as it can be bad for anyone's heart to push yourself too far. That's fantastic news, I'm sure you'll agree.
I'm also booked in for a CT scan of my sinuses and may potentially have Immunoglobulin which might help with the sinus troubles I'm having, they're quite heavy and it most nights gives me a poor nights sleep.
Outside of the medical stuff, we're really looking forward to our first Christmas with our baby boy, we've got him a couple of presents, but didn't go crazy because he doesn't know what's going on, plus I imagine he will get lots of presents from family. I've attached a few recent pictures for you to enjoy. :D
Hope you all have a great Christmas, and don't let this COVID rubbish get you down, just make the most of what you've got. :D
Anniversary of life & Cheese Scones - 11/12/2020
Author: Rob Allen
Sorry it's been a while, it's been a tough couple of month and I've not felt inspired to write anything. Today marks the date of my 7 year anniversary for my first bone marrow stem cell infusion (See the pic of me receiving the cells with this post). The date was a memorable one, 11/12/13. You will also see a picture of my original Donor, this was him giving me some extra cells as a top up to strengthen the transplant.
So that's 7 years, 7 years of extra life, I remember going home early 2014 and my emotions were out of control. The only way I could explain it at the time was to say that it felt like I had lived all of my life in black and white and that now I could see in colour. Everything was special to me, even the simplest of things such as sitting down with a nice cup of tea and watching a bit of telly. It taught me to appreciate more and how precious life is.
I have had 2 bone marrow donors now, I haven't had the pleasure of swapping contact details with the second one, but I am looking to do that now. We have contacted each other once each way via my transplant nurse. So what have I done with my 7 years?? I went back to work to a really good and new job, I managed to buy a new second hand car as my old one was dropping to bits, I raised money for charity by running the Miles for Men event. I met who was at this point my future wife, I married her, and now we've had a baby. I did go to university for some of a year, but that was short lived as I was diagnosed terminal and I wanted to spend my last days with my family.
Recently, I've been feeling really down, I think some of it due to lockdown, not being able to see family friends, or go out and do anything, we're just locked away in this house nearly all of the time. It bothers us both that our baby should be doing more and interacting with other babies and getting hugged by every man and his dog, but he can't right now because of the virus.
I've spoken to doctors and I'm going to see a counsellor and they have checked my testosterone levels and found they are low, this can have a negative impact on mood, so I have received medication for this. Apparently it's quite common for transplant patients to be low on testosterone.
I feel like I'm falling to bits, I have an appointment to see a chiropodist as I have poorly toes on both feet, I'm waiting for an appointment to have an operation to fix a cataract and I'm waiting to see a heart specialist about my damaged heart as they think they may be able to do something to help strengthen it. On top of that, I have terrible sinus problems, so they're going to CT scan my skull to see if they can see what's going on and they're checking immunoglobulin levels so that they can give me an infusion if I need it.
Anyway, the positive things...
Our baby is really developing, he weighs over a stone now, and he's starting to laugh and make giggling sounds when he does. We have him in his bouncer now and he's holding things and playing with toys a lot more, granted, he wants to put everything he finds in his mouth, but apparently they all do that! :D
We're looking forward to seeing family at Christmas and we have a lovely new couch coming in the new year, which is nice because it feels like I'm sitting on a slab of stone at the moment, I'm not sure my back end can take much more.
Oh, I almost forgot to tell you about the amazing cheese and chilli scones I baked yesterday!! Yummy!!
Enjoy the pictures below. :)
If you'd like to see more, you can check out the older updates below, check out the Home and About pages here or visit one of the below links.
BBC Interview & New Couch - 12/10/2020
Author: Rob Allen
It's been a tough month with coming down on the steroids. I seem to feel sick, nauseous and tired every single day. When I get up out of bed, I just want to go back again. I think lockdown is really getting to us both now, it's hard to do anything and with me being vulnerable, we can't even go to a coffee shop or a restaurant, weathers getting worse too on top of it all.
Kimberley finally persuaded me to go out in the wheel chair, I don't like the idea of being wheeled about, I just feel like I look fat and lazy, but the doctors tell me I shouldn't do much on my legs because the steroids will have ruined my joints and the weight from water retention also from the steroids will destroy them, they want me to lose the weight first before I exercise. Anyway, Kimberley has took me out twice now, I'm not a huge fan of being wheeled around our streets at 2mph for an hour and a half, struggling to get up dropped kerbs because they're not really dropped enough for a fat bloke in a wheelchair and scraping my face on peoples bushes that they haven't bothered to cut back and take up most of the pavement. Not to mention the morons who park their cars so far on to the pavement that my wife can't even push the wheel chair past them.
Baby Hugo has started to pay more attention to objects, he's mesmerised by his little rocker play seat, he spends an hour in there every now and again, he also gripped a rattle the other day for the first time and held onto it and moved it about, he's getting clever. We've had a lot of smiles out of him lately, which is really nice.
Last week we went and purchased a new couch, something we always wanted to do but when we were renting we didn't know what our house would be like when we moved, so though it would be best to wait until we settle in to our new place, which we have now. We picked a lovely 2 seater and 3 seater, around the same size as our current couch. The current one is in good condition but the sponge must have gone under the seats as it feels like I'm sitting on planks of wood if I ever sit between cushions, which happens because it seems to sink toward the middle of the couch, so you try to sit at the outer edge, but just kind of slide toward the middle. The bad news is that the couch won't be with us until late January, but we found a fantastic foot stool with storage, so we took that right away. I was having to put my legs up on the coffee table to keep them raised because of the water retention, so this is ideal. :D
There's not an awful lot I can say about the last month because lockdown really limits what we can do.
Shout out to our lovely friends Karli Coates, Claire Lundy and Sarah Whitelaw for looking after us though when we need it, doing little bits of shopping for us and dropping off essentials. We miss our friends.
Oh, there was something unique about this month, almost forgot, we had a BBC interview, a follow up to the first one regarding the arrival of baby Hugo, I've linked it on the Home page and below this post. :)
You may notice I've lost a bit of weight, 9lbs, mostly because I've not been eating much as I feel so ill, yippee. :)
I keep thinking of more things I gone and done, it was my birthday on the 23rd of September, I'm now 41, I thought I'd be gone by now, but I'm lucky enough to still be here. I got lots of lovely stuff, some lovely comfy slippers from Claire, a bag full of awesome chocolately gifts and a birthday cake from Karli, Nice Jumpers to keep me warm from Simon, lots of lovely T-shirts from my Kimberley as well as cards against sea manities and some books from Hugo, one was for me to read whilst I poop and the other was a story book about poop, that Hugo bought for me to read to him, cheeky sausage.
I also made some amazing Cheese and Chilli scones, I will provide a photograph of the cheese and chives scones, but the chilli ones were super hot!!
Wow, this was a big blog... I almost forgot to mention I've been to BMT clinic today, had my bloods taken as usual and discussed a few things. I'm to decide whether to stay on my stomach steroids which they only do in 3mg and taper down by spacing them out, but it's starting to really take it's toll on me now, or I could switch to steroids that are designed to affect the whole body, I'm gonna think about that. I've also had an appointment for my cataract operation, which I'm pleased about and we discussed my heart and although it's had moderate damage from chemo, hopefully it won't get any worse. They've stopped doing venesections because of covid, which involves taking a unit of blood once a month to get rid of my excess iron which will further damage my heart if left unchecked. They said they'll pick up on that after covid.
Broken heart & blurry eyes -16/09/2020
Author: Rob Allen
So I had my BMT (Bone Marrow Transplant) clinic appointment on Monday (2 days ago). I asked what the results were for the CT thorax scan I had (chest scan) and also my Echo scan (of my heart). The good news was that my chest was fairly clear of the damage done by pneumonia in October of last year. The super bad news was that my heart has moderate damage to some of the chambers which they believe was caused by the huge doses of chemo I've had over the years.
Apparently a healthy persons heart would pump 60%, I'm assuming that means 60% of the blood it takes in, but mine only pumps 44% now. So my ticker is a bit knackered now. On top of that I asked about my cataract operation and if they could go ahead with it as there have been delays due to COVID-19. The doctor said that there is a 1/200 chance of complications with the operation and 1/1000 chance of permanent blindness. I found this a bit off-putting but asked to be put on the waiting list anyway as I think providing it all goes well, it will improve my quality of life.
As I've probably mentioned before, I'm trying to come down on the gut steroids (Budesonide) that I'm taking as the doctors think it could be the cause of all the water retention, although now they think that my dysfunctional heart could also be playing a part in the water retention.
With all that in mind, by the time I got home and let the news sink in, I felt rather depressed and down, it just feels never ending as the bad news just keeps on coming. Kimberley had arranged to go out for the first time in ages with Hugo and got back later on that night, I thought it was only right to treat us to a chippie when she got back, which I did and it was glorious, although I felt a bit sick from the hunger so I didn't eat the rest of my sausage and fish. :,(
Anyway, I know the kind of person I am and I know that generally I need a few days after some bad news to get back on my feet and this time was no different.
I've had two cycles of a cut down dose of Budesonide, I used to be on 3x3mg tablets a day, but now I've got it down to 1x3mg tablet every 36 hours, I've done two cycles of that and from today I'm going to do 48 hour cycles and see how I get on.
If all goes well, I should be able to shed the water weight, unless of course my heart is partially to blame for it. The weight causes pain in my legs, but also it's probably damaging my joints as I weigh so much and have very little muscle on my legs. The steroids stop my body from building muscle too, which doesn't help with me having poor mobility. Funny, when I rest my legs at night in bed, I prop them up on 3 cushions from the couch, that allows the water to drain from them and when I wake up in the morning, my legs are often stick thin, just skin on bone.
It's a couple of days on now and since then we have had a few lovely days and I think I've got my head around the heart news. At the end of the day, it's nothing new, I've probably had it at least since my last transplant which was over 2 years ago now, so it's something I've lived with for that long without even knowing it.
Doctor said that I can at least get some fitness when I shed this weight and perhaps build up a big of strength in my heart, which will mean I'll get a little bit of that percentage back, but probably not much. Anything is better than nothing though.
As you can see from todays pictures, we've had some lovely times with baby and smiles.
New friends, BBQs and fun times - 11/09/2020
Author: Rob Allen
We've had a nice 3 days running or so recently. We took Hugo to the park, keeping well away from everyone, we unfolded our camping chairs in a little area sheltered from the wind but still in the blazing sunshine, then just relaxed, all 3 of us together, outdoors!! It's the little things!! The following day we visited my brother, his partner and their little girl at their house, socially distanced in their back garden, it was nice to get out for a drive but even better to interact with people and of course catch up with them again.
Yesterday we had a BBQ planned, socially distanced and super careful with regards to prepping foods for our lovely guests. Our guest was someone we met on a local Facebook page for shielding people in the area, we had just moved to the area the day of lock-down and were looking on the page for recommendations on local businesses and also classes for our baby who was yet to be born.
This girl got in touch with us and offered us some really handy things that we needed for our baby as she had one of her own who had grown out of them. Ever since she's helped us so much and became a really good friend. It's been very odd making a friend but not actually being able to see them properly, it's also very odd not being able to offer friends and family the opportunity to hold our baby and get close to him. We really want that for him too so that he can get used to being around people. Anyway, we had this BBQ and other than a snail dropping from the BBQ lid onto the BBQ plates and then me clumsily dropping lots of knives and forks onto our new friends little girls foot, oh and a giant wasp trying to teabag all of the sweet foods in the kitchen, it was a great success!!! I think even Hugo enjoyed the day.
Today, we had a visit from my brother this morning as he was in the area and we have made some plans to meet up at theirs again and hopefully get my mum involved before this whole maximum of 6 government rule occurs.
Kimberley, myself and our lovely baby boy have been having lots of happy times recently and we are going to try our best to break out of the lock down monotony and think of some fun stuff to do.
Unfortunately my legs aren't great, I have no balance and they hurt all day, but they do whether I'm in or out of the house, so I might as well get out whilst I can, especially whilst the weather is good.
Needle in the Spine - 07/09/2020
Author: Rob Allen
So Friday gone (04/09/2020) I had to go into hospital for my once every bimonthly intrathecal chemotherapy. Intrathecal being the administration of drugs into the spinal chord. Sometimes it goes relatively well and without too much of an issue and it seems some doctors are better at it than others. It's almost as if some have x-ray eyes and some are blindfolded and playing pin the tail on the donkey with the needle.
Anyway, this one wasn't great, the doc was fine at getting the pain killers in, but it never stops the pain completely and he couldn't pierce the protective layer to get into my spine, apparently he said the needle was perhaps a bit too blunt and the tissue too thick. Yummy!! He tried with two different needles then gave up and called the other guy in, goes by the name of Alex and is very good, never had a problem yet, sometimes he might have a couple of stabs, but he always gets it in so to speak.
Anyway, his went without issue really, so that was good, but I was left with a number of bleeding holes in my back which are now rather sore when I sit back on the couch or lie on my back, should be fine in a few more days, usually fades over the course of the week. Anyway, I always dread these things, but I'm more the kind of guy who worries a day or two before something poop as I just don't see the point in getting worked up. I'm lucky like that I guess.
Other than that, I've been a bit knackered the last couple of days and rather grouchy as I'm sure my wife Kimberley will tell you. When your head is splitting from chemo and you have a new born having a screaming fit, it makes things a bit more interesting to say the least. Bless my wife though, whatever I fail to do, she is always there to pick up the pieces.
We took a lovely family pic today, so I thought I'd pop it up here!
Baby and FacePlant - 03/09/2020
Author: Rob Allen
I will try to update as often as I can, but having a new born baby now and being so ill is quite a task in itself. My friend Karli wrote the story that can found on the "Home Page" but since then, I have had many things happen to me.
One of the most amazing things to happen was that mine and Kimberley's wedding anniversary was rudely interrupted by the arrival of our beautiful baby boy Hugo!! As if he chose that day of all days. Born on the 21st of July 2020 at 6lbs 3 ounces. He was a tad under weight and was kept in with his mum over night, so that they could keep an eye on him and make sure he is well. He was deemed to be well enough to go home with us the following evening.
I went back to collect them, it was an amazing day, we were both exhausted, but I looked after Kimberley as best I could. Whilst she was still in labour I went home for a shower and made her some lovely sandwiches and brought her some things to munch on once she was allowed to eat. I didn't realise how traumatic giving birth would be, not just for her, but seeing it happen too, the labour part and contractions, it was quite a day, but with such an amazing life changing reward at the end.
Other things have happened since the story was written, such as my blood clots from DVTs and Pulmonary Embolisms have started to break up, I'm still not able to walk very well though and the weakness can cause a lack of balance as I found out yesterday when I tripped and fell from a standing position landing completely on my head unable to break my fall even with my hands. I was carrying something at the time and for some reason I tried to save those rather than my head. I had to be rushed into A&E to be checked over due to me being on blood thinners for DVT, there was a good chance that I could have had bleeding on the brain. The impact was rather large, I broke my glasses and cut my face and bled onto the carpet.
Anyway, this being my first post, I don't really know what you guys might want to know, but there is an email address on the "About" page, you are welcome to drop me an email if you have any questions or suggestions. Here is the email address for your convenience. :)
Oh and please see the "About" page for a brief overview and other handy links.
Local Lockdown and poorly belly -21/09/2020
Author: Rob Allen
Thursday gone we did baby massage, it was focussed on the tummy and our little boy seems to have tummy troubles, so this was just another tool to help us keep that lovely little smile on his face. We learned of a book called 'The Wonder Weeks'. Apparently babies have 'Leaps' where their brain develops, I think the first one is about 8 weeks in and our little boy it almost 9 weeks old as of tomorrow. We've definitely witnessed a change in him, he cries all the time and wants to be held all the time. The book suggests that he's learning patterns now, not just patterns on wall paper or curtains, but patterns in movements, timings and routines, patterns in everything. Apparently they say it's massively overwhelming and scary for a baby at this point, so it makes them more needy and upset as they try to process things. It's all pretty clever stuff.
I'm having a rethink on the cataract operation, I said I was happy to wait last week because of the risks, but my right eye is starting to cloud over a bit more now and I'm seeing it watching TV or using my phone or PC. It's pretty irritating and I do believe it's effecting the quality of my life. So I may call them this week to ask them if they can put me back on the list as a priority.
I think a lot of this week has been stressful as we have a local lockdown here in Durham, apparently it's still fine to eat out for less and go to the pub for a drink, which is something I could never really risk because if I catch even the flu I could be doomed and I'll definitely have no chance if I get COVID, so that's out of the question. But we now can't have anyone round or visit anyone even socially distanced. They don't even allow relatives to help with child care. Although neither of us are currently going to work, we really could do with the help of our parents so that we can keep on top of things. I mean we haven't even fully unpacked since our move in March as I'm so unwell on my legs and Kimberley has been heavily pregnant and then recovering from pregnancy. Plus the little man requires constant attention so it doesn't really leave time to do anything else.
Watched the news today and seen that Chief Medical Officer Chris Whitty had suggested a full lockdown of the country is imminent as R rates are rapidly rising across the country. I wish people would stop wearing tin foil hats, put a mask on instead and just do as the experts ask them to to stop the spread, but people are just so thick, stubborn and self centred. It doesn't seem to matter to them that experts are telling them that they should follow protocol, not just for themselves but collectively for everybody else. It even bothers me when I hear some people suffer from anxiety wearing a face mask, does that mean that it's OK for them not to wear one, go into a supermarket unmasked and spread it about??? Or should they perhaps stay at home and do a bit of online shopping. That's what I do, but if I was to go out somewhere, the mask would immediately be on. I think those who can't wear masks, should really consider if their journey out amongst other people is necessary or is there another way to get what they need? Then there are the people who claim that they have an exemption for some medical reason, but they don't, they just want an excuse not to wear one, it spoils it for those who do have a real reason.
Still on my 3rd cycle now of 48 hours between budesonide (stomach steroid), last time it was 36 hours, I did 3 cycles of that. I'm not coping so well this time, but I will continue on the 48 hour cycles until things calm down, then I will consider either cutting them out all together or just taking one every 3 days instead of 2. The withdrawal symptoms can be brutal, so I need to be careful, I think I'll speak to the doctors about the next step.
Oh, I almost forgot to mention, we had our flu vaccinations (Me and Kimberley) on Saturday then we decided to take a trip out to the park with Hugo again, it was quite nice to get out again, no one came anywhere near us, but there were some loonies on quad bikes, one of them seen fit to pull a massive wheelie toward the 2 of us with our 8 week old baby. I've seen tonnes of idiots fall off quad bikes and they weigh a tonne, so if that hurtled toward us, it would have been difficult to get out the way, with me being a cripple and Kimberley having little Hugo in a wrap on her chest. Anyway, other than that, it was a nice trip out. Ooooo and we stopped off at a bakery before that and I had two corned beef pasties and later a sausage roll, Kimberley had a Cornish pasty, which she said was not really a Cornish pasty as the filling was mashed and should have been sliced ham or something and on top of that the wrinkly pastry bit was on the top and should be at the side, the reason for this being that workers back in the day in Cornwall would use that bit of pastry as a handle with their dirty hands, eat the rest of the pasty then throw away the handle. Offit or what? Anyway we eat most of that at the park and we had a couple of cakes for when we got back, although I'm not big on sweet stuff these days so I let her eat them both. :D
Anyway, I'll post a few pics as I like to make a habit of it. :)