Back on track

The past month, since getting out of hospital, has been great. The haemoglobins did the trick, killed the virus and protected me from other colds - there were times I was convinced I'd catch something as I met others with heavy colds. But no, I got away with it. Shame the haemoglobins only last a few weeks.

So, it's back to "normal" for me now. Basically staying fit (I'm running again), healthy (very difficult when everyone seems to have a virus), and watching my lymphocyte count in the hope it will start rising before too long. As much as possible, I avoid places where I might catch a virus.

I have found a good work rhythm which involves 2 days in the office and working from home the rest of the week. This doesn't seem as tiring as three days in the office and I'm happy with my current concentration levels.

All eyes now turn to January, when I will have my next scan to check for lymphoma. I'm feeling positive about this because I feel so well, so I think it'll be fine.

Feeling better again

Well, it took a few weeks, but I finally feel like I'm over the virus. I really take my hat off to the staff at the hospital who looked after me so well. I feel that there was no effort (or expense) spared in treating me and giving me the best fighting chance to beat the virus. Clearly the immunoglobulins and antivirals helped a lot - unpleasant as they were at the time. I'm still feeling the effects of the medication, though, as the antivirals made me anaemic. While my red blood counts are slowly rising, it'll be a few weeks before I'm fully up to speed. I have a blood test weekly to monitor this and ensure it's going in the right direction.

I am also more cautious about where I go these days and who I meet. A chance meeting with someone with a cold could put me in hospital again, until my lymphocyte count gets back to normal. I don't want that, so I'll be watching people closely everywhere I go, and will work from home as much as I can, in order to minimise my exposure to bugs. Just for a few more months until my immune system is stronger.

But, overall I'm still positive. This was a virus and nothing to do with Lymphoma. In the grand scheme of things, It's all looking good.

Back home

The drugs are finally all administered and I managed to get home late yesterday evening. Now it's all about resting and recuperating.
There is one potential sting in the tail - one of the drugs I've been taking has a side effect of making you anaemic. Indeed, my latest blood test shows my red blood count to be very low. As a result, I will probably need a blood transfusion on Thursday. Something to look forward to, as I was already starting to miss the hospital 😀
On the positive side, it's great to be home to see Sue, the kids and the dog again.

More drugs than you can shake a stick at

Remember I said that after 30 hours of IV immunoglobulins, all the medicine was in and all I need to do is wait for it to work its magic? well, it turns out I need another dose - same again, 20 to 30 hours on a drip. Not sure how that happened and how we lost track, but luckily someone was keeping count and realised I still needed more.
So, here I am back on the drip until sometime tomorrow. I think the nurses are relieved because I am starting to feel better and was getting a bit frisky - does nobody get Fr. Ted jokes anymore?
The other drawback with this new drip is I won't be able to do any household chores for the next two months. The doctor didn't explicitly say that, but I could tell that's what he meant. Actually, I think he meant six months, but I love Sue too much and will gladly sacrifice myself and help her out after Christmas.

The medicine is in, now we wait

It took over 30 hours, but the IV Immunoglobulin is all in. It finished in the early hours of this morning. Now I just wait for this and some antiviral tablets to halt the spread of the virus. I guess I'll know when things start to improve as my temperature will stop spiking and I feel generally better within myself. Dunno when this might be, so I could be here for a few days yet.

Feeling a bit tender today - probably a combination of the drugs and the virus. I think it'll be a mixture of snoozing and watching rugby today.

Beware of the goblins

I was hoping the intravenous immunoglobulins would go smoothly, but no such luck. they started the infusion slowly so that if there was a reaction it would be lighter than if I got the full dose from the start. That went fine so they stepped it up to the next level. That, too, went fine so they stepped it up again - that's when the rigors started. The most violent and uncontrollable shaking I've ever had. I'm sure they must have heard my teeth chattering from the other side of the ward. it came on really fast, but so did the medical team - they quickly gave me an antihistamine shot and the shivers died down within about twenty minutes. I'm in such good hands here.

I took a break for a couple of hours and we restarted the infusion back at the slowest rate. Fully aware that I might have another reaction, but I really want these antibodies in my system to fight this virus. It took all night, but I eventually finished the first of four bottles. I'll be hooked up for the rest of today and probably tonight, but at least I'm getting the medicine I need.

On the positive side, I've gotten out of hoovering the house for another week AND I have plenty of time while lying here to hatch a scheme to get out of more chores next week........

Goblins

Immunoglobulins are antibodies that your body produces in response to bacteria or viruses. So when you catch a cold, for example, you get over it once you produce antibodies to fight that virus.
My goblin levels are low so I will be getting a top up over the next couple of days. These antibodies will target the RSV virus directly, so I should get the upper hand against it by the weekend.
The treatment will start this morning.

Caught a virus, back in hospital

I haven't been feeling well for a few weeks - nothing major, it felt like I was fighting a cold and I was managing it fine with paracetamol.  However, over the weekend it seemed to go up a notch, my temperature was steadily climbing and I started getting the shakes.

I came into the hospital on Monday, just so see what is going on and they found a virus that concerns them. It's called RSV and in someone with a strong immune system it would cause a few days of sniffles and a minor cough. For me, there is a risk it'll go to my lungs, causing bronchiolitis. so we don't want that. But to fight it, I have to take some drugs with potentially strong side effects. My blood counts need to be monitored every day, and some of the drugs are delivered intravenously. So I'll need to stay in until the course of treatment completes and I am showing signs of being well again. I might get home this weekend. watch this space.....

Checking In

I'm conscious that I haven't provided an update in a while. This is because there is nothing major to report. It's still going really well overall.

I've been battling a cold for two weeks and, because of my low Lymphocyte count, I wouldn't be surprised if I'll be fighting it for another couple of weeks. I've been put on antibiotics as I've also developed an earache and slight cough - so hopefully we can nip any potential infection in the bud.

The only other thing is my knee hasn't been right for a couple of months - it's swollen and I don't have the full range of motion. No idea what this is - I suppose one possible reason is my new immune system doesn't like it and is attacking it. In any case, I will have an ultrasound examination and (probably) steroid injection in it in the coming weeks. Hopefully I'll be able to get back running after that.

I'm up to three days a week at work and this is going well too, although I'm drained after each day. I find that week-by-week I am getting clearer in thought and concentration, and my energy levels are slowly improving. My company continues to be really supportive and I feel that, with them, I have a real ally in my quest to get back to regular working hours - one that watches out for me to ensure I am not pushing myself too hard, but also gives me enough work to keep me occupied while I am there.

So, I am happy and my family is happy - life is good!

Medical word of the day :- Chimerism

My Bone Marrow Clinic checkups are monthly these days, so I was there today to discuss how it's all going and to reflect on the results of my latest scan. We are all very happy overall with my progress, but there are some things to keep an eye on:-

1) My spleen is still slightly enlarged. It is the same size as the last couple of scans, so it's good news that it's not getting bigger. I still think that this is a result of scar tissue from when it was a whopper. There is absolutely no evidence of any other enlarged lymph nodes in my body - so I am hugely encouraged by this - in fact I just gave a whoop and a holler to celebrate.

2) I have some nodules on my lungs. Possibly scar tissue (fibrosis) from recent chest infections, but the doc reckons nothing to worry about. My lung functions are completely normal and not affected.

3) Chimerism is to do with having two sets of DNA in my body - i.e. my old (pre-transplant) blood cells and the ones from my new bone marrow. Obviously I want to have none of the old lymphocytes, as they mutated and became cancerous, so I want to get rid of them - but there are some still lingering.  My lymphocyte chimerism is currently 78% new and 22% old. This is considered normal for this point in my recovery, and as the months progress I hope to see the old ones reducing and ultimately hitting zero, with the new lymphocytes completely taking over. If this doesn't adjust sufficiently, then I may have a lymphocyte top-up from my donor, just to nudge it along.

So, I look at today's visit as a very positive one. It's all good news, but a reminder that I'm still recovering and there's a lot happening inside that needs to be monitored.

Another milestone - back to work

I went back to work today, after 16 months off.
I am very lucky to have a really helpful and understanding employer who has worked with me throughout my illness to ensure that my treatment  and family are given priority.

Based on the advice of my consultant, I have agreed a back-to-work schedule with my company. Starting with one day this week, two days for next three weeks, three days for the subsequent two weeks and then back to full time - all over a seven week period. We'll monitor this closely and see how my energy levels are coping.

I was worried about how I would feel (mentally and physically) back in the office today, but I'm glad to say that the experience has been positive and I'm actually looking forward to getting my teeth into some work. I think I'll be up and running quite fast.

Baby Jabs - they were bad enough the first time

Waah! Started my baby jabs today. Not many people get a second go at these, so I was determined not to cry this time :-)

Polio, diphtheria, tetanus, pertussis, pneumococcal, haemophilius influenza, meningococcal group - just for starters. Two shots in one arm, one shot in the other. this goes on monthly until February. Then I get a break for a year before I have my MMR jabs.

It stung a little, but I was brave. And I got a sticker and a lollipop.

Sickness seems to have stopped - no idea what it was

Listen to me as I say
I haven't been sick for 10 day(s)
I've tried eating the hunks
that made me blow chunks
Still everything goes through me one way


Could have been GvH, could have been bad luck with slight food poisoning. Nobody knows, but at least it's stopped now

Saucy dunks make Dad blow chunks!

Saucy dunks make Dad blow chunks!
This is a rhyme my daughter made up recently in response to my increased bouts of vomiting. I keep eating things I probably shouldn't have such as dunking crisps into sour cream dip, or having crackers with humous. Stuff I wouldn't have necessarily considered bad for me, but my stomach disagrees. It's happening about once a week this past month. I had another episode a couple of hours ago when my lunch came back up. Tuna salad - seems innocuous enough as I'm not supposed to be neutropenic, so salads should be ok - unless I am neutropenic again. Blood levels can waver like this for a while after a transplant. I'm due back in the hospital tomorrow so I'll discuss with the docs and see what's going on. On the positive side, I'm getting comfortable with puking and getting quite good at it too! I wonder if I can get a job throwing up?

Other than that, I'm doing well at the moment. No major problems to report. Even had a lovely holiday with the family in Ireland. I had some great swims in the sea - the docs were cagey when I asked them if I was ok to swim, but couldn't give me a reason not to other than the usual be careful and don't eat any chocolate bars that might be floating by :-)  As it turns out, one of the beaches we visited was closed because a local sewage works had problems and there was stuff in the water. Needless to say I didn't swim there.

We'll see what the docs say tomorrow regarding my new "talent". Who says chemo and transplants are no fun?!

Latest scan all cool, probably

Just been to the hospital to have my regular checkup and talk about my latest CT scan. As far as we can tell, everything looks good - I say that cautiously because a specialist still needs to look at it and write up their findings. The hematologist I saw today thought the scan looked clear, so that's encouraging.

I was also a bit worried about my spleen, but it doesn't look like it's enlarged any further - again need confirmation from the specialist, but I am still encouraged.

So as it stands, everything is looking good. Other than a recurring bout of indigestion and some fatigue when I try to do too much, I feel in great shape. Oh, my lymphocytes (white blood cells) are still very low (but higher than the last blood test, so they seem to be creeping up), which means I'm still vulnerable to colds, 'flus, etc. I just need to be sensible....

Still going well - maybe a little tired

I helped out last week at the Lymphoma Association - they are designing a new training course and wanted some input, so I went along. It was a long day for me, but an insight into how I will feel once I go back to work. It lasted from 10 - 4 and I found it draining, but very satisfying to be able to participate. Thankfully the meeting was in a nearby town - I remember thinking to myself that it was good I wasn't further away as I'd never be able to drive home I felt so tired.

I'm free of illness at the moment and am making the most of it - back walking the dog, jogging, and just being more active in general (although this hasn't yet stretched to hoovering or washing up - don't want to push myself too far too early :-)   )

I have a CT scan this Friday to see how everything looks inside. I feel good, so it should be ok, but there is always a little apprehension about these things. I'll know more once I go back for the results on the 20th.....

Back up and running

Well, it looks like it was a virus that took me a month to shift - and nothing more sinister. It makes sense because my lymphocytes are very low - these are the little fighters that recognise and attack viruses, and it is expected that they are low as this is the side effect of the transplant and the suppression of the immune system.

So this means that I am prone to viral infections and, once I get them, slow to get over them. They will also affect me worse as I can't effectively fight them. I suppose I learned a lesson the hard way over the past month and will now take it more seriously than perhaps I have been. But also, I don't want to turn into a hypochondriac who flips out anytime I see someone with a cold. I will be sensible, but will keep an eye out for people with sniffles, cough, etc and leave the room/area if necessary. I should also expect to get some more viral episodes before my immune system has fully recovered - which could take another year or more.

On the positive side, I'm over the most recent virus and feel good again. I've started walking the dog again and will restart jogging in a few days' time. I really love feeling healthy - don't take it for granted!

Still rough - taking the bad with the good

Looking back through my previous posts, I started to feel rough around the end of May/start of June, and here I am on June 17th still not feeling right. The cough that brought me into hospital is still lingering, and my temperature has been hovering close to the point where the hospital will want me to go back in. This just doesn't seem to be improving. After talking to the docs on Wednesday about this, it might boil down to one of three things:

1. My immune system is still too weak to quickly rid me of infections, and it will eventually get better. I just have to bear with it for now.
2. This might be a sign of graft versus host attacking my lungs and causing coughing/infection. A CT scan is being arranged to look for scarring of the lungs.
3. I am still not producing enough antibodies to fight infections. Not sure what the answer is here, but I have had a blood test to check for antibodies and wait to see what this shows.

Anyway, after a few great weeks of feeling almost normal and getting back jogging, walking the dog, etc, it's frustrating to have taken a step backwards. I'm looking forward to this going away and getting back to my more energetic ways.

Another milestone - no more Ciclosporin

Just a quick note - I passed another milestone in my recovery today. I have finished taking the immuno-suppressants. So far so good, with no obvious signs of GvH. It's all going to plan.

And I'm home again

Twenty four hours in hospital did the trick. That was enough time to assess me, give me IV antibiotics and watch my temperature stabilise.  I'll be on oral antibiotics for the next week, which will hopefully clear up the infection, so I can quickly get back to normal, playing with the dog in the back garden.

Back in hospital

I didn't feel well all week, but since my temperature wasn't high, I was just getting on with it. But yesterday lunchtime, my temperature spiked so the hospital said "come on in, we've missed you, we have a bed and broccoli sandwiches for you". How could I refuse such an offer. 

They are superb here. Within a couple of hours of calling them, I was checked in, diagnosed and about to start IV antibiotics for what they think is a chest infection.

The initial thinking is that 24 hours of IV antibiotics should do the trick so I may get home today or tomorrow. 

This kind of thing could continue on and off for two years, until my immune system is strong again.

A cold or GVH - something to watch

For the past few days I have been fighting a cold, or something like that. The usual stuff - sore and hoarse throat, sneezes/sniffles, slight cough (with the odd mess being coughed up). I have also had a mouth ulcer and some slight diarrhea (too much info for you?!). Throughout this, my temperature has remained below the level that the hospital want to know, so this has been largely under the radar until today when I had my fortnightly appointment.
It turns out that Graft Vs Host can manifest itself as a sore throat/sore mouth, and diarrhea is another sign too. Given that this has started to happen just as I am weaning off the immuno-supressants mean it's one to watch closely.
If it's a cold virus, it should hopefully clear up by itself in a few days. If it's GVH then I'll still be suffering in a week's time when I'm due back to the hospital for a follow-up. Of course, there is a third possibility - the cold turns into a chest infection and I end up back on the ward for a few days.
It'll be interesting to see which way this goes.......

All looking good - getting cocky now

I haven't blogged in a couple of weeks - largely because there hasn't been much extra to say. I continue to live my life in semi-isolation, but as I get stronger every day/week, I find myself getting more and more relaxed about going out in public. For the past few weeks I have been getting out daily to either walk the dog (I do 5k, she does 10k around me!) or to go for a jog (I'm up to 5 miles without stopping - happy about that). I have also been to the shops a few times - life's getting exciting now! I have made plans to run a 10k in June, go to an airshow in July, Ireland in August and back to work in September. However, I still avoid many places where I feel I have no control over who I meet and the potential for picking up something nasty.

I was at the docs for my fortnightly checkup on Wednesday and told them about my plans - their response was cautious. I suppose I shouldn't have been surprised as my immune system is still low and (I forgot about this) will remain low for up to two years. So, they are happy with my progress and how energetic I feel currently, but warned that it wouldn't take much for me to pick up an infection and end up back in hospital. Flying to Ireland is of particular concern because of all the bugs that can be picked up at an airport or on the plane (especially LHR - measles, for example. And I read this morning about an outbreak of measles in West Limerick too!), and what would I do if I got sick in Limerick (I'm sure there's a lovely trolley in a corridor of the Regional I can use!).

I am in compete agreement with the doctors and needed Wednesday's chat to ensure I don't get too complacent about how vulnerable I still am - in spite of how good I feel. I will continue with my plans, as long as I realise that all can be scuppered if I get sick. That's a chance I'm willing to take as I'm really not one for sitting around doing nothing - I want to live my life.

One reason I'm so positive about my recovery is all the results from the 100-day tests have come back negative. Other than a slightly enlarged spleen (which I still think is scar tissue), there is no evidence of Lymphoma and loads of evidence that my new bone marrow is working well. I am continuing to reduce the immuno-suppressant drugs with no sign of any Graft-Vs-Host so far.
Life is good.

The weaning begins

I agreed with the docs this week that I would start reducing the dose of immuno-suppressants that I take. This is good news for a couple of reasons :- the fewer drugs I take, the better as far as I'm concerned and this will allow my immune system to start working better and keep any lymphoma at bay. Assuming I get no major graft vs host issues, it'll take a couple of months to come of the suppressants completely. Once I'm off them, I will be able to stop taking another horrible drug that is preventing my blood levels from rising above half way (but it is protecting me from a nasty version of pneumonia, so I guess it's worth it). So, I'm on the way to becoming drug-free which is a great prospect (except for penicillin - I'll be on that for the rest of my life because the transplant does things to my spleen that it never recovers from).

I received more good news this week - the CT scan results came back and, with the exception of my slightly enlarged spleen, everything is completely normal. The spleen is no surprise because it was enlarged going into the transplant (apparently normal should be 13cm and mine is 16cm). It has not increased in size since and the enlargement could be scar tissue as a result of how stretched it was this time last year (doctors at the time called it a whopper :-)  ). It could also be lymphoma in there, but given the doses of chemo I have just been through, and the fact that the disease in all my other lymph nodes has completely cleared up, I'm inclined to think not.  Because I'm reducing my immuno-suppressants which will allow my immune system to strengthen, if there is lymphoma left in the spleen then it will be a good test to see if the new immune system eradicates it. In any case, we will be watching this closely over the coming months......

100-day health check coming up

The docs will be performing a 100-day health check over the next few days, to see what, if anything, is going on with the Lymphoma whilst I complete my transplant. Funny to think that my transplant is effectively still in progress - I've gotten over the hospital bit, but I don't view the transplant as complete until I'm off the immuno-suppressants and have a fully-functioning immune system.

The check begins on Friday with a CT scan to see if there is any activity (lumps) in my lymphatic system. Not wanting to tempt fate, but I think this will come back negative as the doctor had a good feel a couple of weeks ago and she couldn't find any lumps [** my immature friends should insert a smutty joke here **]. It'll be interesting to see what's going on with my spleen as it was still slightly enlarged going into the transplant.

Then on Wednesday I will have a bone marrow biopsy - really looking forward to that. This will show if there is any lymphoma in the new bone marrow. Again, expecting that to be clear.

Back to the hospital again on Thursday for a lung function test. That'll be a breeze.

It'll be good to have the checks just to see how I'm doing overall - and to confirm that it's all going as well as I think it is.

How to get through a transplant

I haven't posted in over a week because things are going so well for me at the moment. Unless I get an infection and end up back in hospital, the next big event for me is in a month's time when they start to reduce the immuno-suppressants and allow my new immune system to do what it does best. In the meantime, I continue to visit the hospital weekly for routine blood tests and a checkup. I still can't go out in public to areas where I might pick up a bug (hospital aside!), and will not be able to for another month or two.
In the meantime, I was talking to a friend this morning about how I prepared myself for the transplant and how I got through it so well. I believe that the steps I took in advance to prepare myself helped me to get through it and I feel that this is something that I should start sharing with others who are about to start going through the transplant process. I took what I experienced from my first transplant back in 2014 and worked with my Haematologist and a Psychologist to formulate a plan which worked quite well. In summary, it boiled down to two things:-

• How to prepare myself mentally for the transplant. This included the run up to the transplant as well as the time during the hospital stay. How to address the feelings of dread when I thought about the transplant; what to do when I am feeling without energy, bored, and maybe even depressed during the transplant; how to manage the transition between hospital and home. A few months before the transplant, I was very worried and started to dread the thought of it. Working with a Psychologist really helped and it got me through the whole experience with a positive frame of mind. I would be interested to hear the thoughts of the nurses and doctors who treated me during my stay on what they thought of my attitude and how I coped compared to others - I may ask next time I'm in the hospital.
• How to prepare myself physically. I have always believed that exercise promotes good health and I made sure that I went into hospital as physically fit as I could. For me, having just been through 6 months of chemo, this was running 5k every other day with 5k walks on the alternate days. In the run-up to the transplant, they perform checks on you to determine your fitness for the procedure  - this includes heart and lung tests - so I figured that having strong heart and lungs would be important. While in hospital, I walked 1k around the ward every evening - this kept me alert and strong and the hospital clearly believed this is a good thing as they have posters everywhere reminding all patients to have a daily walk. I haven't seen any studies between physical fitness and side effects of transplants (or chemo for that matter), but I cant ignore the fact that I got through two transplants without any sore mouth or bad infections and I wonder how much this is related to being physically fit.

Maybe I'll write a book!

Just getting on with it

Nothing much to report these days. After the intensive blogging during the transplant when something different happened every day, these days are quiet with little change between each one - which is how I like it.
I feel like I'm starting to get some energy back - with the recent nice weather we've had, I've spent a lot of time in the garden. I have also (shh, don't tell the docs) ventured to the shops during quiet times and have also walked around the village a couple of times. The doctor's advice is to remain at home and away from viruses until the May bank holiday. I'm going to draw a balance between going completely mad at home and risking catching something in public - I will go for walks and shop visits when it's quiet and not a lot of people around. If you live in Risborough and see me out during busy times, you have my permission to come over and slap some sense into me!
Anyway, I'm hoping things will stay quiet and predictable until the start of May. At that point they will start weaning me off the immuno-suppressants and we'll then see how (or if) the graft versus host starts to play up.

Tubeless Trev

For the first time since the start of November, I have no tubes sticking out of me. The PICC line and Hickman lines have now been removed and the last of the associated stitches were taken out on Wednesday.
It's great to be able to have a proper shower again. I haven't been able to have a shower since January because the Hickman line made it so awkward (don't worry - I have been washing myself in the meantime :-) )
Although, sometimes I needed to wash more frequently - especially when the kids decided they wanted to draw on my head. Below is Aishling's attempt to turn me into a leopard....

So, what's next?

Because I've been recovering well from the transplant (couple of extra visits to the hospital aside), people have been asking am I nearly done with treatment.
The answer is no - still a long way to go.....

The transplant itself is a very tough procedure from which it will take me some more months to recover. I still suffer from fatigue and cannot do too much without needing to sit down and catch my breath. It will take a few months for me to get over that (although I aim, through exercise, Guinness and black pudding, to get through this sooner).

Even though my new immune system appears to be embedding well, it is being suppressed through medication so that it gradually gets used to my body and doesn't attack it. This leaves me open to infection and is one of the main reasons for my hospital visits so far. We will continue to suppress it for at least another couple of months, so that risk remains for the foreseeable future and will stop me from doing too much in public in case I catch something.

When we do eventually ease off on the immuno-suppression drugs, we will then see how much graft-versus-host plays up. If it gets bad, then this will need management with the docs - or it might be very minor (a slight rash, or something). However, the sooner I get to this phase, the better as far as I am concerned, because this will finally allow the new immune system to operate at full strength and hopefully attack any Lymphoma that is still there.

Because I have a brand new immune system, I am in many ways like a newborn baby with little or no immunity or resistance to bugs. Everything I have been vaccinated against has gone and I need to have my baby jabs all over again. I'll also probably catch every cold going. I will, however, draw the line at wearing nappies and eating pureed apple, cucumber and carrot pots no matter how much Sue protests.

It will take the rest of the year (and beyond) to see how well the new immune system is fighting the Lymphoma. Through bone marrow biopsies and CT scans, we will be able to see if there is any activity by the Lymphoma.

So, I'm doing really well so far, having been through the transplant itself with minimal complications. It will be the summer before I start to even think about going back to work and later in the year before we can draw any conclusions on how well it's fighting the Lymphoma. In my mind, though, with a 60-70% chance of a cure, there is no reason why the news won't be all good. After a year of treatment, it's my turn to have the upper hand, baby!

Home for St. Patrick's Day

Happy St. Patrick's day everyone! I'm dancing a jig and drinking a pint of guinness as I type ;-p
I got back home late yesterday evening and all is well. It's a good gauge of your progress when you look at what you do when you get home - the last two times, I flopped into the chair and didn't move for a few hours. This time I wandered around the house, and was snacking on some food - definitely moving in the right direction.
As usual, the excellent team in the hospital cracked the reason for the fever and have nursed me back to what should be normal at this point in my recovery.
One spanner in the works, though, is that we confirmed today that my son has chicken pox. He is still in good form, but there are more and more sores appearing and he could be in for a rough few days before it passes. Not ideal timing for me either. The docs did a test and found that I still luckily have antibodies to chicken pox, so I have some protection. They have also upped my dose of antivirals that I'm on as a precaution. Let's hope it doesn't go any further than that.

And back again (hospital)

Well, I lasted almost two weeks this time. But I'm back in hospital. Woke up this morning with a cough, fever and chills. Nobody is taking any chances so I'm having a few tests and staying overnight (actually, I wouldn't be surprised if I stay longer).
I guess this is my life while I'm on the immuno suppressants- I am at risk of catching anything and cannot be too careful these days.
Needless to say, I'm thrilled. I was really missing the hospital food 😊

First full week out of hospital

Tomorrow, I will have managed a full week at home. No fevers or anything that worried me, so it was overall a good week. The main thing affecting me these days is fatigue - I still don't have the energy for much and spend a lot of my time on the couch. I tried some washing up on Tuesday, but I think I reacted to it, so I won't chance that again anytime soon. Luckily I have an understanding wife who ties me to the chair and beats me - I mean who understands that I'm still recovering from a transplant :-)
I did have to go to the hospital on Wednesday and Friday for routine appointments. The doctors are happy with my progress and it's good to know that my (new) blood levels are rising nicely. Friday's visit didn't go as I expected - I blew chunks all over the Day Treatment Unit because I reacted to an antibiotic they gave me. I'm due to have the same antibiotic in a month's time and I am going to push hard to get a different one next time - unless they want their walls painted a different colour!
I have noticed that my appetite is very slowly returning. I managed a bacon sandwich for lunch today and I actually liked it. I am also starting to drink more water. I'm hoping that all of this will combine to improve my energy levels soon. It'll be nice to get out of the house for a few walks. I still need to be careful when I venture out as my immune system is very weak due to the immuno-suppressant drugs I'm on. I will need to avoid crowded places and anyone with an illness (such as hospitals!).
Speaking of immuno-suppressant drugs, so far, I haven't noticed any major Graft Vs Host problems, so they're doing their job. It'll be interesting to see if anything flares up in about a month's time when they start to wean me off the drugs.........

I made it home (again)

Got home yesterday afternoon and am now relaxing in front of the tv. My energy levels are quite low, so I won't be up to much over the next few days, except eating, sleeping and drinking.
Let's hope I can stay out of hospital for a while this time. Although I have to go back for an appointment on Wednesday just to see how I'm doing.

Going home again

Looks like I'll be going home today. The doctors need to have one more look later this morning, but they seemed quite confident yesterday that today would be the day. Certainly nothing has happened overnight to change my condition.
I still have a hacking cough that doesn't seem to be getting better or worse. Haven't had any fevers in a few days, so it's worth trying things at home again.
In just a few hours, I'll be sitting at home, dog at my feet, sitting watching tv in my coat, hat and scarf. I wonder if I'll ever warm up again?

Back in hospital

Well, here I am again. Back in the familiar confines of the haematology ward. I wasn't feeling that good after I woke up yesterday, and then in the early afternoon, my temperature spiked so I was asked to come in.
I'm back on intravenous antibiotics and will be here probably until Saturday.
A small setback, but not unexpected, so I'll just roll with it.

Home sweet home

I've been home almost two days now and I have to say it's lovely to be back with my family. I do miss the protective cocoon of the hospital, so it's going to take a few days to adjust back to home life. The big thing is the temperature - I am constantly cold! If I could, I'd turn the house heating up by 10 degrees, but Sue says it's already too warm! Not sure what temp they keep the hospital at, but I've been spoiled with heat for the past month.
The other thing I worry about is infections. Coming from a nice, isolated room to an environment with a dog (and kids) takes some getting used to - so I'm paranoid about bacteria!
I also think I've picked up a little cough, but it doesn't seem to be getting worse. I'm due to visit the docs tomorrow, so I'll tell them about that. I'll be seeing the docs once a week for the next few weeks (more frequently if I get a fever or feel unwell).
So, overall, so far so good. I feel a bit weak and am not up to much at the moment, but little by little I feel like I am getting stronger. It won't be long before I'm going for walks outside.

Here are some pics taken last Sunday when Sue and the kid came into hospital to celebrate Kieran and my birthdays.....

Going home

The docs have been to see me and given their thumbs up to go home. Good news, but I'm feeling apprehensive- maybe it's because I'm leaving the protective environment of my room and going back out into the big, bad world.
I still have a long way to go and could end up straight back in hospital at the slightest sign of infection or fever. My immune system will be very low for a few months, so I'll need to be very careful.
Still, it'll be great to be back with Sue and the kids and I'm sure I'll adjust to home living in no time.
Forgot to mention in earlier blogs that my hair started falling out in clumps at the end of last week (as predicted, three weeks after chemo), so Sue shaved it on Saturday. This is the fourth time I've been bald. It's good to see my other persona back to use my extensive hat collection.

Birthday

It's my birthday today. It's also my son's birthday and that of our dog, Rosie. Feb 4th is also like a birthday to me from now on, as it's the day my new immune system was born (day 0). It still looks like I'll get home tomorrow-  which is a nice birthday present to get.
My bloods are climbing every day and it's all looking good. I have felt more nauseous over the past couple of days and I think my energy levels are down a bit (I want to sleep a lot). The docs are not surprised-  they say as my bloods rise, my body is doing a lot of repairing, especially in the stomach and gut lining.
We are also seeing what is suspected to be mild graft vs host in the form of, how shall I put this, green poo. I was a bit taken aback, but on reflection it's good to see a bit of GvH as it's taken as a good sign. In my head I'm picturing the new immune system fighting the lymphoma too - little Incredible Hulks in there fighting the cancer and turning everything green. I wonder can I keep the green stuff going until St. Patrick's Day?

Appetite

I haven't had much of an appetite for the past three weeks. In fact, for much of the time, the sight and smell of food turned my stomach. However, I managed to force it down because food and nutrition is really important when building new bone marrow. Plus, I wanted to avoid even thinking about a food tube- they're going to get the food in one way or another, so I opted for the easy way. Call me picky, but the thought of a milkshake going up my nose and down to my stomach wasn't appealing (unless I'm having a Kranks burger in Limerick after a lorry load of Guinness- but that's a different story for a different time 😊).
Anyway, my appetite is slowly starting to come back and I'm almost enjoying food again. Yesterday's dinner was macaroni cheese and I wolfed it down. Now if they could only stop the dinners looking like a bowl of dog puke, it might help even more......

Newsflash: I have neuts!

Just got some good news:- my neutrophils have finally started to rise. This means my risk of bacterial infections is reducing and, if I get no more fevers, will go home as soon as Monday.

Another fever

Yesterday was a strange day. I didn't have the best night's rest the night before (which also happened the last time I had a blood transfusion)- I was feeling flushed and headachy all night. So I woke up feeling flat and that lasted until the afternoon when a fever kicked in. Again, the team jumped into action and took blood cultures to see if there are bacteria on the loose. I switched back to intravenous antibiotics, took some paracetamol, had a snooze and felt better after that.
As I write this, it's the morning of Day 14 and it seems to have stabilised as I feel ok again.
I found myself being very negative yesterday when I wasn't feeling well- worrying about what if I had caught a bad virus or whatever. That quickly passed once I felt better and I'm back to my sunny disposition again.
I wonder which Trevor the nurses prefer - the quiet one, or the one that jokes every time they enter the room. I'm sure some of them think I'm nuts, but hey, I have to stay entertained somehow or it gets very boring in here 😀

Counts moving up

Yesterday was a great day. I found out that my blood counts were finally rising. Day 11 - exactly the same as with my last transplant. I doubt I'll be out as quick this time, though, as they are either rising very slowly (platelets and white blood cells), not rising at all (neuts), or even still dropping (haemoglobin). A real mixed bag. Still, I am upbeat because it means the new marrow has engrafted and is producing something.
It's now 7am on Day 12 and I'm already having a blood transfusion. Two more pints for me today (these were supposed to be given to me yesterday, but they held off because my haemoglobin had raised slightly at that point).
At least I finally get to use my "count from sesame street" voice, ha ha ha ha haaaaa.

Platelets and blood- food of kings

Had some platelets last night just to top up my low levels. This time I got them at 10pm, which is much better because once I got the antihistamine shot that comes with it, I went out like a light and slept soundly all night.
I'm going to have some more blood this morning, as my haemoglobins are getting low. I think I'll start laughing and talking in a cartoon vampire's voice when the nurses come in, just to see how they react.
Day 11 today. Still feeling relatively comfortable. No sore mouth, energy is low and I get occasional headaches. So not bad at all.
Just waiting for my blood counts to start rising and for my hair to fall out - they say slapheads are sexy, so I'm looking forward to that phase of things 😄

Some pics

The kids came to visit again today. Not sure how much more action my bed can withstand (insert smutty joke here 😁)!

Sleepy head

Yesterday was Saturday, so the kids were able to come with Sue to see me again. It was great to see them again but within five minutes I was worn out! Kieran, especially, was full of beans and hopping around the place. Before I knew what was happening me, Aishling and Kieran were on the bed at its full height and tilting down at an angle like a dump truck-  I thought we were going to slip out the bottom of the bed.
The whirlwind lasted 30 minutes, and according to forecasters is due back today and a few times this coming week (because it's half term).
Today is day 10 and I'm still going well. My temperature is normal and I am pleased to say I have nothing major to report. I suspect that I might need more platelets today. I know they are crucial for me to not bleed, but the drugs they give me to stop any potential reactions to the platelets make me sleepy and so I don't like it. As usual, though, I will just roll with it and if I'm asleep all day then so be it.

The fever finally arrived

Well, I lasted until day eight (yesterday) before the fever struck. I reckon that was a good run. So do the docs.
I blame the platelets I got yesterday! It may have been a coincidence, but I was fine all day, then I got some platelets, had a snooze afterwards, and woke up with the fever. It wasn't too bad at 38 degrees, but it was enough for the medical team to jump into action. They are a really good team anyway, but they were very slick in handling the fever- during the next couple of hours I had blood cultures taken, started on intravenous antibiotics and went for a chest xray. It is comforting to know I'm in such good hands.
So, here I am on the morning of day nine and I am feeling ok. My temperature is back down to normal (for now- it's been up and down all night, but is so far being managed with paracetamol) and I now have an antibiotic injection three times a day on top of all the other meds I have to take. So it's still going well for me and I have started to turn one eye towards the next phase of the transplant- when my bloods start to recover and I start to see some of the effects of GvH (graft vs host). I wonder when that will start. This coming week, I hope.....

Blood transfusion

I had two pints yesterday, of something that is creamy and thick and people say it's good for you. Not Guinness,  but blood ☺
My hemoglobin levels fell below a certain level, I guess one of the reasons that I was feeling tired, to they have topped me up.
I felt weird afterwards - all the way through to this morning I have had a low grade fever, felt very bloated and had a headache. So i didn't have the best night's sleep and I'm worried that I won't be in the mood for the party I've arranged with the nurses later.
Other than that, it all continues to go really well. The predicted infection and fever still hasn't happened, so I continue to confound the medical staff here. While that is good, one drawback is they won't give me paracetamol for my headache because they are saving it for my fever (you know, the one I'm not going to get).

Lack of energy

Just woke up to day seven, and all is relatively well. I have been completely neutropenic for the past four days and, so far, none of the predicted fever and sore mouth has happened - I am thankful for that as it's not very nice.
In fact, the key thing these days is a lack of energy. Getting up and having a shower in the morning is a struggle that leaves me exhausted afterwards. Fortunately,  I've been able to cancel my plans and rest in bed afterwards ☺
During my last transplant, my blood counts started to rise from day eleven. I wonder if I can beat that this time.....

Bits n pieces

I woke up feeling pretty decent again this morning, although a couple of ailments have crept in since yesterday morning- diarrhea and spots. While these might sound minor, if not properly treated and nipped in the bud they may fester and cause problems. The spot is on my nose, and the diarrhea is, er,  well you know where.
So I'm on antibiotics now for the spot and I'm keeping a roll of toilet paper in the fridge to help soothe my nether regions (not really- I have a topical ointment to help there but I must remember not to mix it up with the cream for my chapped lips, again).

The aul doss

My Gran-auntie May used to say "you can't bate the aul doss" (for my non-Irish friends: bed is great). For the four years I lived with her while going to university, I totally agreed. We'd meet at breakfast sometime between nine and ten and then, more often than not, go back to the aul doss for another hour or so. God knows how I graduated (but I did!).
I was thinking about this at 6.30 this morning during my nurse's visit - there was a storm outside, the wind was howling and rain beating off the window. As soon as the nurse finished, I rolled over and went back to sleep.
I've had another comfortable and peaceful night and I'm feeling good so far, probably better as the effects of the chemo subside. I keep thinking that this can't last, but I am really grateful that so far (now on Day 4), I have no real concerns to report. The docs told me yesterday that I am now neutropenic,  and to expect an infection/fever or two as I have no immune system to protect me for the next 10 days or so. So each morning I wake up feeling OK,  I thank God for another good day and then plan my busy schedule. For everyone traveling to work in the UK and Ireland in the storm this morning, stay safe - even better, go back to the aul doss.

The waiting game

It's 8am on Sunday morning and all is quiet on the ward. The nurse came for my observations at 6.30am - I said she looked tired and ruffled, but I don't think that was the observations she meant.
There's a bit of hustle and bustle outside the room as they bring breakfast. I think I'll have bran flakes, toast and coffee (again).
Getting back to my observations, they are all happy with my progress so far. Nothing worrying like a fever or sore mouth to report (but they all look at me knowingly - it's just a matter of time). My appetite and energy levels have taken a hit since last week's chemo. I also suffer from flashes of nausea - so even though I may be hungry, I never know how a meal is going to go until it turns up and I look at it. Breakfast should be OK,  but the cocktail of 100 tablets they bring afterwards tends to turn my stomach.
The kids turned up yesterday and it was fantastic to see them. They were fascinated with my moveable bed, and before I knew it I was floating 6 feet off the ground as the kids raised it to the highest setting. Good fun for them, but it didn't help my dodgy tummy.

Now half German

I received the stems cells at 6pm last night and thanks to the medication they gave me with them, I've been asleep since. It all went pretty smoothly, und now ich bin waiting zu recover.

Somebody hung this on my door during the transplant ... maybe it was the little people keeping an eye on me.

Feeling a bit flat today, but I guess this is how it will be for the next couple of weeks. I did find a new use for the puke bowl though!

As usual, thanks for all your prayers and support. Danke schon!

Transplant Day

And so it arrives-  the day My donor stem cells turn up and get put on a drip for me to take in.
The cells themselves are enroute from Germany and are due into Heathrow at noon. By the time they are brought to the hospital, checked and counted (not one by one by hand, I presume!) It will be between 4 and 6pm before I see them.
Not much else to say until then, except to note that the chemo has caught up with me and I feel like I've been in a battle- nothing major, just the usual gritty feeling after chemo. It'll pass.

Day minus 2

Everything in the transplant is geared around Feb 4th - my stem cell transplant day (and also, coincidentally, World Cancer Day). Today is referred-to as Day Minus Two. Thursday is Day 0, and hopefully sometime around Day 14 I will start producing new blood cells.
Today is also a rest day from chemo, but I'll have one more tomorrow (melphalan) before the transplant. I do have to continue taking the immuno-suppressants today and I think they are making me a bit shaky (or maybe it's all the chemo finally catching up with me).
I've been at home all day, but go back to hospital later this evening and I'll stay there for the rest of the time, until my immune system is strong enough for me to leave. Who knows when that will be - I'm guessing three to four weeks.
Being able to get home these past few days has been great, but I'm now moving into the next phase where I will need to be under the careful eye of the medical team.

Getting to the bottom of the matter

I'll have to give up the auld transplants one of these days-  they keep giving me aches and pains.
Today's problem is constipation-  I have to say I've never fought a battle like I did this morning. Hope it's not like that again tomorrow, or I'll be singing Ring of Fire by Johnny Cash (incidentally, that song was playing on the radio in the delivery room when Sue was giving birth to Kieran- she wasn't impressed but I thought it was funny).
Otherwise I'm still going home every day after chemo and am feeling generally fine. Starting to feel a bit more tired and not as active, but that's to be expected as the chemo does its thing.
I also start on the immuno-suppression drugs today. This is to ensure the stem cells aren't rejected on Thursday. It also qualifies me to represent Ireland in the World Transplant Games in the future when I'm up and running!
On a more serious note, the amount of support, messages and prayers that are being said all around the world for me is such a boost. I really am lucky to have such wonderful friends and relatives. I do believe the prayers help and your support has helped me get through this so far, so please keep it up.

The great escape

Ah yes, home sweet home :- a sanctuary from the world; a haven of peace from the hustle and bustle of everyday life; a retreat in times of stress and pressure; somewhere you can relax and be yourself. Or, more realistically, a place where the dog is ready to pounce at any time, lick your face and proudly show you the latest fox poo she's collected on her walk; a place where the kids bounce on you regardless of the huge line hanging out of your chest; and you tiptoe around afraid to touch anything in case it's got bacteria on it. I wouldn't swap it for the world!
After a lot of faffing around yesterday (I can go, I can't go, etc), I managed to get home from the hospital by late afternoon and it was great to see everyone again. I went in for more chemo this morning and was again allowed home afterwards. I'm feeling surprisingly well and, after initial misgivings about my energy levels, I think getting home when I can is a great way to distract me from the transplant itself.
So, here I am, in the middle of a bone marrow transplant, sitting at home worrying about how I can get out of doing the washing up and hoovering the house - what a lovely distraction!
It won't be long before I won't have the energy to get out of bed, but I'll deal with that in due course. As it currently stands, at this moment in time, I feel great and am spending time with my beautiful family - nothing else matters.

No sleep til Brooklyn

When I'm not jogging, volunteering, playing guitar, eating and drinking, I can occasionally be found playing guitar hero with the kids on their Wii. One of the songs we like to play is No Sleep Til Brooklyn by the Beastie Boys. It's fun watching a 5 and 10 year old hopping around to the tune.
I was thinking about this at 2.30 am this morning when I was finally unplugged from the drip after another full day of Campath- the itchy chemo. As I type, I'm having another attack of hives - particularly on the soles of my feet and between my toes (trying really hard not to scratch).
Anyway, back to last night. The joys of sharing a hospital room meant that just as I was drifting off to sleep around 3am, the guy in the next bed let off a ripper of a fart and a snort. That woke me up again I can tell you. I guess I now know how Sue feels after I've had a couple of pints 😄)
So, feeling tired now, but very comfortable. We've had breakfast and I'm enjoying a peaceful moment before the docs come around. I hope to have a better night's sleep tonight as it may be in my own bed. The lengthy chemo that takes 16 hours per day has finished, and the next 4 days will be just a quick hour-long infusion that is well tolerated by people, so if I'm not reacting to anything, I should be able to go home and come in every day until Tuesday. After that I will be back in for the duration - in my own room I'm happy to say, so I won't be troubled by smelly thunder in the night anymore (well, at least until I get home.....)

Long Day, late night

I sneaked out of the hospital to the nearest pub and went drinking until 4am. Ok, I didn't! It took until 4.30am to finish yesterday's treatment. It was scheduled to be delivered over 12 hours anyway, but I had a reaction which meant they needed to slow the rate of the drip. Fever and shivers and I've never see so many hives in my life- everywhere, even in my mouth and ears! The nurses here are great and took care of each reaction as it happened.
I'm feeling fine again now. Just sitting here waiting for breakfast. I'll enjoy a couple more hours off the drip before I go back on for the same again today (if I don't go to the pub instead ☺  )

Here we go

I'm on my second day in hospital already. Yesterday was a mixture of a lot of hanging around for them to put in the central line and then waiting for a bed on the ward. The central line insertion was fine and it's being used as I type for today's chemo. I was nervous before the procedure, but then they gave me a sedative and suddenly all my problems were over! I floated around for a while before it wore off, and the procedure went smoothly.
Today's drug is called Campath. For the medically-inclined among you, it's a monoclonal antibody whose purpose here is to reduce/remove my T-cells (a certain type of white blood cell). This is effectively starting to dampen-down my immune system and make it more receptive to the stem cells when they arrive. I will have the Campath today and tomorrow- 12 hours each day hooked up to the drip.
Sue's here with me at the moment. Once she's gone I think I'll get very bored as I can't get my tablet to connect to the WiFi network- I was relying on that to watch tv/films. Luckily my phone connects, so I'll watch stuff on that.

Hair fun

I've been going through the hairstyles a little these past few months. Back in September, I decided I wouldn't get it cut again until after Christmas - just to see what I looked like as a mophead (I used to be a mophead when I was a kid - a real beatles-type cut).
So I got a bit raggedy up until Christmas - I even had some small curls (sorry, no pics). Then after Christmas I had it cut - the intent being that I wanted people (especially the kids) to get used to seeing me with shorter and shorter hair. The next step on that process was this morning when I had the kids give me a #1 crew cut. They had a lot of fun doing it too (see below). The next hairstyle will be in about 3 week's time when I go bald. Then 6 weeks or so after that, it will start to grow back. Last time it grew back after chemo it came back thicker and darker - that's one of the good things about chemo. Weight loss is another good thing, as is increased private parts size (but that's another blog for another day!)

Why am I not more nervous?

With one week to go before I start my Allograft (that's short for Allogeneic Stem Cell Transplant - a transplant of stem cells from a donor), I'm feeling surprisingly relaxed about the whole thing. I thought by now I would be getting very nervous, but maybe I'm just getting better at blocking out the worry of upcoming treatment as I've had a lot of practice over the past four years.

Maybe it's because I've already been through a transplant and know (kind of) what to expect. The big difference with this transplant is that I am using donor stem cells to rebuild my bone marrow, rather than my own. This introduces the risk of Graft Vs Host Disease where my new immune system will attack my body. We want this to happen to a small degree because it means the new immune system is also attacking the Lymphoma, but don't want it to severely attack my organs - this is the balancing act the docs will be performing in the upcoming months until my new immune system beds-in and recognises my (Adonis-like ;-p ) body as friendly.

My donor is a young German male - 27 years old and is fit and healthy. That's all I know about him for now - and that's all I need to know. Once I'm through this and out the other side, in 5 years time, I can meet him - all in good time. Out of 25 million people worldwide that are registered as bone marrow donors, they found 2 perfect matches. Interestingly, both are in Germany - maybe that says a lot about my ancestry and where my forefathers came from. Unfortunately, none of my three siblings were matches - but I'll let my mother explain why that might be :-)

I'm in good shape at the moment. I wasn't too good seven months ago when I relapsed - my spleen was huge, I was anemic and had no energy. But six months of chemo got me back into remission and I'm feeling really well at the moment. I'm back running, eating like a horse and trying to put weight on before I go into hospital. I have passed all my pre-transplant health checks and have reached the point where I am ready to just get on with it now.

Having been through a transplant already, I'd like to think I know how the transplant is going to go, but nobody can predict how I will react. It starts with seven days of chemo to get rid of my bone marrow. Then on Feb 4th I get the stem cells and, after that, it's a waiting game - waiting for the stem cells to build new bone marrow and for the marrow to produce new white and red blood cells. The waiting can be anything from fourteen days to a month. In the meantime, I may suffer from infections, sore mouth, diarrhea, vomiting, no energy, no appetite and so on. Sue doesn't want me to talk about what might happen in case it's a self-fulfilling prophesy. With that in mind, I think what will happen is every night, nurses in short skirts, black stockings and suspenders will sit on my knee, give me a massage and feed me chocolate with the occasional cigar and glass of brandy. This will go on for two weeks after which I can go home as the transplant was a resounding success (and I didn't even notice it as I was, er, otherwise occupied).

Let's see what happens.....

Jan 19th - one week to go

One week to go. Testing, testing, 1, 2, 3.....