I am back at the start in regards to Rituximab treatment, back in the hospital, same place same treatment, but that little further along. I also know that in 4 weeks time it will start all over again from the same place doing the same things, maybe a little differently but the starting point will still be the same, for me the hospital, for Tom it was getting off a bus.

When wondering around I did notice a few things have changed The first thing, the car for Chemotherapy patients was moved (which thrown me), I was on time until I could find the new car park. Well I did in the end but not until I had parked into the multistory car park, which is now back being chargeable (£7.10 for up-to 4 hours). Some consolation, is that it was empty, so looks like no-one else could find.

Other changes, the big bus in the car park, gone. The waiting room is now set-up with single chairs per table and spaced out with 2 meter gaps. Still no relatives are allowed into the waiting room. However, it was very quiet, only a few people were there waiting to be seen. Looks like all appointments are still being done via telephone calls.

This rounds treatment was straight forward, there did notice that my blood pressure was on the low side, 96 over 60. I must admit I have no idea what these figure mean. So this is were Google comes into play.

Yes according to Google, who we all believe and trust, my blood pressure is in the “Ideal Range”. So all is good. Well the site Google sent he to is

https://www.nhs.uk/conditions/high-blood-pressure-hypertension/

So I survived another visit to the Beacon Day Unit and I must say all the stuff there are great and very welcoming. But I would say I wouldn’t recommend going unless you really have too……

Until next time “arrivederci“.

COVID-19 is still here and life is slowly returning to pre-COVID, but very slowly.

Do we wear masks, where do we wear masks, which masks are best to wear, should they be worn in schools? Who knows…..

Cheap meals Monday thru Wednesday, for those allowed out into public..

We have had some summer weather followed by rain, more rain and you guessed it, more rain. Good old British summer time.

But back to treatment, yes all is going well. Liz and I have been out to a few peoples houses to meet up and catch-up, which has been great. I have been taking my 4 tablets a day, like clock work, with my breakfast and a drink of flavoured water, is it me or does plain water not taste of anything….

This week I had my bloods taken again. This time I managed to get through the security guards at the door and was able to sit inside the surgery. It was, twenty questions on why I was theey then face masks on hands washed ,temperature taken and if you past you was frog matched to a sit.

So fast forward a day……

Thursday was the Consultants appointment till over the phone, which is great no 45 minutes drive to Taunton and 45 minute drive back. This time we got the “R” word. REMISSION. Hipppeeeeee. Yes, it is official, I am now in remission, all my blood counts are in the normal range, so time for a big party. OH! ……. Maybe be not, I will have a Coke and watch a film. All joking apart, this is great news, the treatment has gone really well, I do not think it could have gone smoother, So a great big hug to the NHS and all there staff.

An answer to prayer. – TABLETS – Yes. I have become accustomed to the tablets. I am taking them daily without any major issues or concerns. This is good news because I am on them for the next 23 months… (but who is counting)

Earlier this week I had my bloods taken again. This, then was follow-up consultation. I am pleased to report that my white blood count is down to a impressive 2.5. I am now at a stage that this could fall to low……

Wow, down from the starting point of 76 to 2.5. The consultant is very pleased with my progress and has given me the green light for the next blast of Rituximab, to be administered next week.

When speaking to the consultant about how I should manage interaction with other people now that the Government are trying to open up the economy, I found out that I have been a bit of a naughty boy. I must admit I have not been in any major supermarkets, thanks to Shane my son-in-law, who does our weekly shopping for us. I have been into a few smaller shops but I have been told to refrain (as much as possible) from doing this – especially at the moment when there is a lot of uncertainty about the possibility of a second wave. This must persist until around Christmas, in line with my last round of Rituximab. So who is looking forward to Christmas already…??

In general we are having to step back a bit from where we were to ensure that I am not put in harms – way. A small amount of pain around not being sociable (small for me, maybe not so small for others) will hopefully see so out of the main COVID situation so that we can look forward to a bright and fully engaged (if not so busy), 2021.

So here’s to a HAPPY NEW YEAR.

The plus side, I have booked again for next year and the speaker we are going to hear is Alistair Begg; someone I would highly recommend listening too. His teaching can be found on the link below.

https://www.truthforlife.org

So my last treatment (apart from the daily drugs), was some 12 days ago. I must say, I am doing OK with the running order of issues which I do consider minor.

1. Tablets: I have now perfected the morning routine around taking them.

2. Funny tummy: No not that my tummy looks strange (although some people may think that). No, I have to drink a lot of fluids during the morning otherwise I start to get a funny/sicky feeling in my tummy.

3. ‘Have I taken them???’ It doesn’t seem to matter how often I check if I have taken my tablets, I keep having to check the number of days left in the pack. Mental….

So overall I am really pleased with where I am.

Just so life doesn’t get boring, I am thinking of doing a 5km or maybe a 10km run to support some charity(s). Is this foolhardy? Comments please……

I have mentioned before that I have been reading a lot, and I would like to highlight something a read today which is a challenge to me. It is a quote from the character Dean Swift – Gulliver’s Travels. He said of the fashionable ladies of his day that:

“they were so busy being religious they had no time to say their prayers”

Before COVID, I had a busy life, maybe not being all religious, but busy nonetheless. Then COVID… and life stopped. Couldn’t go out; couldn’t do half the things I was used to doing, well more than half. I had to stop! This has given me time to think about life’s busyness and what is truly important. I don’t want (I should say we don’t want ) to go back to the way life was before. There has been a window of opportunity to reflect and think about the busyness (that we often so create for ourselves). I’m wondering if you too, have had time to do the things that can usually be pushed aside and put on the back burner in order to fulfil a busy schedule? Maybe like me, there has been time to reflect, time to breathe, time ‘not to do’ as you normally would? I wonder what has changed for you?

The challenge for me now (and maybe for you) is how to keep this slower pace of life now that things around us are on the move again? I’m human and the pull to ‘do more’ can be very strong and at times inviting, so I am conscious of my weakness. Please do check in with me and ask me how it is going!

Until next time continued thanks and appreciation for all your support.

A few things have been on my mind… well, a few people. Here in Street, there are people who are going through a lot more than me. Also back in Bicester (where we used to live), there are family friends who are also having a really tough time. I feel a bit of a fake! My treatment is all planned; all mapped out, but life is not like that for so many.

A lot of people at this time are having to deal with a lot of difficult feelings and emotions; some have had medical emergencies that can cause real-life issues. At the moment, going to hospital can be (to varying degrees), a major logistical nightmare which causes untold stress and anxiety. Adding to the stress is the ‘No visitors allowed’ restriction in hospitals at present; all for good reason, but it can be scary and isolating for those who are admitted.

I was at the Beacon Center today for the first blast of my six (four weekly) rituximab infusions. Sitting in the reception area, I was watching people coming and going, most of them on their own – like me and others were asking to bring their partners in as they didn’t wish to leave them in the car. The staff were all so caring and so good… they tried to help everyone within the guidelines.

Like I have said, this is a new phase! This process started last Friday, where I was at the Beacon Center bus getting measured, weighted and having my bloods taken. This was followed by a trip to the County Ground Taunton (my first time there, but no cricket was on!), for another COVID-19 test – I was bowled over… pun completely intended! Monday a day of rest! Then on Tuesday – a chat with a Day Unit nurse going over the process for treatment day, followed by a chat with my Consultant; she is really happy with the treatment so far. My white blood count continues on its way downwards – it is now at 20 from 76. So, this gave me the green light to commence the treatment.

So today I met some of Brian’s family.

Meet Bea and Bob.

Bea and I became attached at the hand; I couldn’t go anywhere without her. Bob, like his name implies, kept bobbing in and out all day; we would become attached for a while and then he would bob off to someone else for a while…

Today was a long day but it went swimmingly. So in future, this treatment should just reduce to an afternoon.

Really, my throughs and prayers are with all those people who are finding things really difficult; who are struggling with either physical or emotional issues during this time of lockdown.

Some of the people that have helped those who are struggling at this time and who I would like to give a big, big shout out for is the whole ‘Meals on Wheels’ team here in Street, They are doing an amazing job feeding and forming relationships with local people through this growing ministry. For some people, it may be the only hot meal and conversation they have all week. I pray God continues to bless and grow this ministry.

The same routIne (so far) this week as in the past few weeks. I was at the Doctor’s surgery yesterday to have my pre-increase bloods taken and I was thinking that it is funny how ‘strange things’ have become the norm… If a year ago you would have said to me that I would have to wait outside the surgery to be called in by a nurse with a face mask on and to have my hands sanitized, or to wear a face mask myself, I think I would have laughed and said, ‘Yes, I will be Pope!’ But these days it is the new norm.

Anyway, I had the results late yesterday. Good news is that my white blood cell count was down again and is now at 22 but, this week there was an increase in my kidneys function (or something). Nothing to be concerned over but I’ve been told that I should increase my water intake.

In regards to treatment progression, today wasn’t a day I was looking forward to in one way but I was in another.

I wasn’t looking forward to it because I have been finding it hard to take the tablets. I was on two tablets up until yesterday and today it has gone up to four. I managed them with a bit of ‘self-motivation’ today (we will see how it goes).

I was looking forward to today because it is the start of my two-year treatment plan and if all goes well, this could lead to a time of remission – which would be great and means I’ll be tablet free for a while (Yipee).

Well, what can I say…. treatment is going well. I do not think I could have asked for more really. I only have one more increase in dosage before moving onto the second drug, which will be by infusion at the Beacon Center every four weeks for 6 rounds. The tablets though, I will continue to take for the duration of the two years.

Although all is going well I have noticed two funny/concerning things over the past week.

1. I keep wondering if I have taken my tablets, even though I pretty sure I have. I find my self opening the drug box (which contains 1 weeks worth in each box) and checking that it only contains the following day’s drugs. Thursday I think I did this 4 times. What is this all about? Am I going mad or is this common? I was going to say, ‘is this normal’ but I do not think it is normal, maybe just a Markism.
2. When I was on my first course of Chemo treatment, at the end stages, I found it really, really hard to take the tablets. At that time I would spend 5-10 minutes talking myself into taking them. This continued into the second course of Chemo, whereby it became so bad that they had to change my drugs from oral to infusion. So now on this course of treatment I have noticed I am starting to think about the drugs more and more each morning. I am currently on 2 tablets a day, this will increase to 4 Wednesday. Please pray that my old mindset around taking tablets will not come back. I know it is only 4 tablets and many other people are on a lot more than this and is a lot better than the 12 tablets a day (as I was on in past treatments), but if this becomes an issue like before, I not sure what the options are.

Looking back over the week now, I can see treatment is working well, white blood count coming down and still no major side effects. I may be feeling a bit more tired than normal, but I am pushing through this by trying to keep active.

It would be great if my mind and throughs could move on from taking the tablets. Our brain is an amazing thing, it takes us down the same paths time and time again (I call them ruts). Once we have learnt something or picked up a habit, good or bad, it takes considerable effort for us to start down a different path. Each time we try and plough a new route, we struggle against the walls of our old well-trodden tracks. This is what I feel I am up against, hitting the walls of the old tracks, forcing me down that old well-trodden path.

But……..

Our God is a good God. I was out walking and listening to my music on shuffle when an old Maria McKee (Love Justice) song came on called ‘You are the Light’.

Here are some of the words.

Oh how you shine in my time of darkness
Oh how you shine when everything seems hopeless
You know how to help me
When I can’t stand on my own
Don’t let go now

The words of this song just hit home. Have a listen! The right words at the right time…

This week has gone well with no major dramas. I have tried to be active, even when I have felt that little bit more tired than usual.

So, it is hard to report anything that has stood out during the week from a treatment point of view. The main highlight was yesterday with a visit to the prison – oh sorry, the doctors… for my initial blood tests. During the afternoon I had the all-clear to increase my dose. That means now doubling up to 200 mg. I was also informed that my white blood cell count was down from 76 to 42, which is really good news!

I am not sure what people have been doing during this period where most of the country has gone into lockdown. I have been reading a lot more. During the past few weeks, I have again been reminded of the importance of ‘STORY’. This is twofold: firstly, the story I live by; which in simple terms is the gospel and how it affects my day to day life and secondly: the story I am living; what I am doing with this life I have been blessed with? Am I in an adventure; am I sitting on the bench/sidelines or am I in a great saga (and not because I am over 50… well… just!)?

We all have a story to tell and we are all currently writing a new story. The question I am asking myself (and you) is what type of story is it and what part am I/are you playing?

While I have been waffling on I have had the all-clear, but my next load of drugs had not been ordered. So here’s to the wait!

Now off to pharmacy to collect them…….

So here I am, in week 4 of treatment and I am once again being prompted about the importance of ‘STORY’ and how powerful stories can be, especially when we share our stories with others.

Live your story… Tell your story (cheesy line, I know, but I hope you know what I mean).

The story continues…..

Missing one I am sure it will not be too bad, but if I take two, well will my head explode or will I swell up like Violet Beauregarde (Charlie and the Chocolate Factory). This hasn’t happened yet, but the other day I was standing there packet in hand, thinking “Have I taken it or haven’t I”. In the end, I had to count the tablets left before being happy I had already taken it for the day.

I must say mornings are the hardest time, I feel really tired most days and find it hard to make the first steps. The alarm goes off – if I remember to set it in the first place, but I am also pretty sure that some mornings I switch it off automatically. I must say I do make the most use of the snooze button to get those extra few minutes of shut-eye. Then it is mad panic to get up, washed, dressed and all the way down in the study to log into work (well we do live in a three-story house). This does seem to be a bit a theme now, not having as much energy as before. I am really hoping this is just a passing phase and once my body settles down and I get used to the drugs my energy levels will come back.

This week there was no overnight stays in the hospital. I had bloods taken at the GP surgery on Tuesday – a nice easy trip to Glastonbury. The Surgery is like entering a secure wing of a maximum-security prison! People with masks come and escort you in and out of the surgery.

The times we are in now, under the cloud of COVID, has made all the normal activities – the things we had taken for granted, all feel oddly strange. It has now been 3 months since I have been in a supermarket; 10-12 weeks since I was last at my work desk. I know the government is looking to get the country back up and running, but the question I have (and I am sure a lot of other people do as well) is ‘what will the new normal’ look like….

Moving on! After having my bloods taken on Tuesday I had to wait for the all-clear which I received late afternoon. This then allowed me to take my increased dosage (100 grams) on Wednesday morning (today).

After taking the increased dosage, I had to go over to Taunton for… guess what.. more bloods.! A trip to the Beacon Center – to the mobile unit that sits out the back, followed by a wait in the car park until finally getting the ‘thumbs up’ to return home.

I had the all-clear, so all is good…….