Summer Recovery

Apart from a couple of minor (probably an understatement but another story for another time) immune system related mishaps, I started my recovery in style. Although she eventually agreed, it took a bit of persuading to get my consultant to ‘allow’ me to go to Glastonbury Festival. The walking and long days were fun but hard work and I had to recruit my mates and Dad to help me with carrying my bags, but I’m glad I went. We in fact had an awesome time!

Glastonbury Festival
Glastonbury Festival

It has since become the beginning of a pretty ridiculous summer.

Ordinarily, I’m the type of person who maximises my life by minimising resting time. Having spent the last six months in the opposite state, life has bounced back in a big way. In fact I think one could argue I’m going a little too far.

Today has seen a couple of firsts: My first proper haircut, I bought my first bike (since I left school, with the intention to regain my fitness) and I’m currently writing this on a flight to Prague to partake in the first of two consecutive stag weekends. I have formally been offered a get out card by the stag if it ‘gets too much’ but I’m going to give it a good go, English style (the stag is Czech though so it’ll probably be a little less than the usual English affair- here’s hoping any way!)!

Flight to Prague
Flight to Prague

Most people have been surprised when I tell them I’m back to work full time, but I enjoy my job and it keeps my brain active, so it was an easier transition than it could have been.

I spent a lot of time thinking about my priorities during my time off and I still don’t know the ‘answer’ to the meaning of life, but I realised that we might as well enjoy the time we have and make the most of life. My diary is pretty much full from now until October, and though I’m spending a lot of that time catching up on missed partying, I’m conscious that I want to make a positive contribution to society so my next goal is to find an outlet for that ambition.

I’m back in the world of packaging now, so this blog will probably start to be filled with packaging related activities from now, but for those who have an interest in my illness or health related posts, I’ll probably reorganise those thoughts into a seperate or more coherent site or set of pages.

In the meantime, please feel free to get in touch if you have any ideas, thoughts or questions.

Robin,

Day 95-105 recovery

I read an article yesterday that dark chocolate is good for you. And not in the traditional sense of moderation. The ‘Queen Mary University London’ study suggests that flavanols found in Dark chocolate can ward off heart disease and alzheimer’s when eaten in vast quantities, which is lucky as this Easter I have amassed enough to keep me going for a couple of months.

After my blood transfusion a week last Wednesday, I’ve spent the time relaxing lazily. I’m still fighting with dizziness and light headedness which can be frustratingly disorientating like being permanently drunk. My brain is also not up to scratch, I’m still struggling with easy and beginner settings on Soduko and Chess, but expect I’ll catch up with myself soon.

My tongue has appeared to have gone through a full regeneration after the initial roughness and blisters, it went black and then I had a spell of fresh baby tongue and it seems to be back to normal now. My sense of taste still brings up some surprises but I think it’s starting to return to normal.

Black Tongue
   Black Tongue
Baby Tongue
Baby Tongue

 

 

 

 

 

 

 

 

 

It’s difficult to see for sure, but there’s no change in my hair meaning I didn’t lose it all, but it hasn’t started growing back yet. I have, however, noticed new growth on my face. My eyelashes have started to grow back (although my last remaining long eyelash fell out today!) and my beard seems to have started with adolescent and interestingly blond initial stage growth. I might give it a couple of weeks before I shave as it will be barely visible and only having shaved once in 3 months, I’m probably out of practice.

Eyelashes
Eyelashes

So it’s been just over 100 days and I’m nearly there- I have two more outpatient infusions of Rituximab the first being on the 10th. I’m not sure how long they will last but I gather a couple of hours, so they shouldn’t affect me much.

Looking back through photos from the end of last year, I barely recognise myself, I’ve got used to the Nosferatu look I’m rocking. I also have about 3 stone of weight to re-gain to get back to normal. I know it’s going to be hard work, but I’m looking forward to my first jog round the lake!

20th Dec 2014
    20th Dec 2014
6th April 2015
6th April 2015

Day 86-94 Chemotherapy

As people ask how I am, I usually respond with ‘I feel fine.’ Although an automatic response to a casual question, it’s something I sometimes have to think hard about. I recently realised that I’m no longer sure what ‘fine’ feels like. With a dizzy disorientation, light headedness, lethargy, forgetfulness, tingling extremities and a dull haze around everything I do, I still feel much better than recently although I suppose health and state of mind are all relative.

Day 86-87 Chemotherapy

Although it has since turned out not to be the case, as far as I had expected, these were my last days on the ward- I had previously planned a card and some chocolates which with the help of Liz were hidden away in my belongings to pass to the nurses on my departure.

I had a final dose of Chemotherapy (Etoposide, ifosfamide and Mesna) on day 86 (Wednesday) Which was gruelling and annoying, but dampened by the thought of going home. The Thursday (day 87) was rounded off with a final intrathecal (IT) injection of methotrexate which was performed quickly and relatively painlessly (although not a procedure I’ll be missing)

On a few of the ‘IT’ injections administered I’ve experienced the pain or shocking numbness which can occur when the needle comes close to a nerve ending. It happened again this time although strangely the pain felt like someone pinched my leg which startled me. Otherwise the procedure went fairly smoothly.

Homeward Bound

I’m fairly used to the procedure now, and was careful not to jeopardise my release by giving anyone any excuse for delay (the organised registrar helpfully rescheduled his morning to start the procedure early). Even so, I was not ready for collection until around 17:30 and although we didn’t get home till 19:00, I was happy to have the option of refusing my final hospital dinner!

Still aching from the procedure I spent Friday and most of the weekend resting.

It was Liz’s birthday on Sunday and although her gift from me is an IOU, her family came up and I think she was more than happy to see them. I realised I hadn’t seen or spoke to them directly since Christmas, so it was good to catch up and experience a little friendly normality.

Days 91-94 Recovery

On Monday, it was back to the routine of the district nurse arriving to perform blood tests. I was a little apprehensive as I had decided not to take my Lenograstim over the weekend after a discussion with the nurse who agreed with my logic. The results came in fairly quickly and I had a call from the ward asking how I felt. I felt light headed and knew I was neutropenic but my neutrophils had dropped to 0.0 which is well below the normal safety threshold. I managed to negotiate with her as my platelets were still 28 (low but within danger levels provided I don’t cut myself) and I knew I had the back up of the injections.

My next test was Wednesday (yesterday) the call came in again, and this time they weren’t as lenient. My neutrophils had risen to 0.2 but my platelets were now 7 which normally would lead to random bleeding but Luckily my skin integrity has seemed to hold together fairly well apart from a few random pin pricks and bruising across my skin.

Petechiae pin pricks
‘Petechiae’ pin pricks

Petechiae is the technical name for the pin pricks which are caused as blood vessels burst due to the shortness of platelets (also technically called ‘thrombocytes’ and ‘thrombocytopenia’ is the condition).

so I’m sat in hospital after another uncomfortably interrupted night waiting for a transfusion of blood and platelets. If the internal politics go in my favour I can go home shortly after although it’s difficult to argue and negotiate with doctors for whom safety is their primary concern.

Day 79-85 Chemo

After my return home, I could feel my body recovering with the usual ache of my bones. Otherwise, I could feel myself getting back on track.

I decided to break from my usual computer gaming and have a go at painting. I only managed to put down the first background layer and spent a day testing colours but it felt like a long overdue release – a hobby that work had replaced in recent years and something I’m glad to re-visit.

Willing my body better seemed to help as I received a call on Thursday afternoon after another good set of blood results.

I’m on day 4 and roughly half way into my R-IVAC course. I’d forgotten the amount of chemicals it involves and the daily routine has almost merged into a dreamy autopilot. So far, the treatments have lasted well into the night and having regular interruptions has affected my sleeping pattern. Although trying to keep awake and mobile, I’ve spent the last couple of days catching up on sleep.

My appetite is also deteriorating again as the sickness kicks in. The nurse started me on some new anti-sickness tablets today which seems to have helped, but I still have a dizzy headache.

I’m glad to say that the end is in sight and though I appreciate the work of the nurses and doctors, there are a lot of things about this experience that I will not be reminiscing over.

I’m looking forward to getting back to my painting.

Day 66-78 recovery

It’s been over a week now since I left hospital, and apart from a few visits from friends, family and nurses, I’ve spent most of the time resting and playing.

After leaving the hospital, my body crashed and I spend the first I few days lying down and watching telly. With a spinning head and pains from my fingers and throughout my body, there wasn’t much more I could do other than sleep. Even watching the telly was uncomfortable at times and sleeping seemed to be a good way to hide the time away. The addition of diarrhoea was not a welcome entry to my symptom list.

On Tuesday (day 71) I had a brief meeting with the consultant who said that everything seemed to be going to plan. And that as soon as my blood had recovered I could go back into hospital for the final round. Being optimistic, I was hoping that it could start the following Monday (yesterday) and the doctor arranged for my blood results to be monitored in case my body bounced back quicker than she expected. Before I had time to call up and check my blood results yesterday afternoon, I had a call from the hospital asking me to come in ready to start treatment. Although I was not looking forward to another 10 days in hospital, a glimpse of the end put me in a good mood.

Just as I settle in to the routine of a 6am start, and hours of sitting around staring at the wall the doctor arrived. Apparently there had been a miscommunication of my results and although my neutrophil levels were up to 3.4 on Wednesday, they had dropped back to 0.2 this morning meaning that I’m back in neutropenia and that another onslaught of Chemo is dangerous at this point.

So having packed up my belongings again, I’m ready to return home to sit out my internal recovery.

I think this has been the biggest theme of my recovery so far, apart from the waiting, it seems that yo-yo-ing between home and hospital with barely hours to prepare and plan, let alone days has been quite a struggle for my mental stability. I desperately want to start planning the rest of my life, but I don’t even know where I’ll be in 3-5 days time let alone know how my body is going to respond at each stage.

unfortunately it seems that forecasting isn’t something that the NHS does very well.

On a lighter note

My new patterned finger nails seem to be coming on nicely. Luckily stripes coordinate well into my current wardrobe, although it would be better if they had more vibrant colours.

Stripy finger nails
Stripy finger nails

 

Day 58-65 Chemotherapy

Last Wednesday I was expecting my second intrathecal injection. There was a delay with the doctor coming round, and by about 14:30 I was resigned to the fact it wasn’t going to happen (noting that the doctors finish at 17:00). It turns out there was a difference in opinion between the new registrar (who by the way, seems to be on the ball; a refreshing enhancement to the ward) and the doctor who would perform the procedure. The registrar felt that I was best off getting it out of the way so I could go home for a couple of days to be back on Saturday, while the doctor felt that I needed a break between the injections in case of an adverse reaction. Bearing in mind that I didn’t really want to spend another whole week in hospital, I quietly sided with the registrar. The consultant came down to decide; the three of them came in to my room having audibly discussed this outside and told me that they had decided that I could go home this evening. Conveniently my dad had just arrived while this was going on, so a couple of hours’ admin and we were travelling back home. I thought it was a little strange that they could just cancel this procedure, but they need beds and I wasn’t going to argue.

Chemotherapy Outpatient style

Having spent Thursday at home, and feeling a little refreshed, on the Friday I was due a short course of Vincristine. The dose was just a 10 minute infusion so they decided it would be ‘easier’ if I had this as an outpatient. It was a little strange to be sat on a ward that apart from the lack of beds and curtains, seemed familiar. A chair, side table with water jug, drug trolley, drip stand with pump and an HCA walking round performing ‘OBS’

A cup of tea and paperwork later, we were done. The 10 minute infusion took about 3 hours out of my dad’s day, but I think he feels like he’s making up for lost time and said he’s glad to help.

Return to hospital

with all the travelling, packing and unpacking, it didn’t feel like I had much time at home, but I managed to delay my return visit till the evening with a minor fib about having to arrange transport. This meant that some of the visits by friends and family which had been planned on Saturday could be performed in the comfort of home rather than in the depressing side room without Mariokart.

Saturday afternoon was spent preparing for a day of 24hours Methotrexate on Sunday followed by a 3 hour course of Rituximab. The course started on time at 4am with some pre-meds including antihistamine and a drug to protect my bladder. This was followed by saline solution which preceded the methotrexate by a few hours and continues as I write this until my body has expunged the remaining poison.

I had almost forgotten about the Groundhog Day routine that ensues with this treatment: beep beep, wake up, unplug the pumps and stumble with the stand into the bathroom, urinate into a jug, return to bed and press the call bell, lights on, urine tested, bag mixed and refitted to the pump, try and get some more sleep. This happens every 2 hours for about 4-6 days.

I realised I was feeling really weak yesterday and my blood results confirmed neutropenia. I had a couple of blood transfusions which seemed to help and I feel a little more alive today.

How do I feel?

With the obvious lack of sleep I’m shattered. I’m a little disorientated and dizzy; I’m not sure whether this is due to tiredness or the treatment, but probably a little of each. As expected, the main side effect from the methotrexate is that it affects one’s gastrointestinal tract meaning blisters and bleeding from my mouth all the way down to out.

I’m still using a multitude of mouthwashes which help, along with tablets to aid bowel movements, but eating and brushing my teeth hurts. I have constant pains in my abdomen similar to wind or stomach cramps along with horrible shooting pains which make me writhe around a little, but I’m getting used to this now and I know it will ease off in a few days.

A new pain, which I don’t remember from before is intense stinging in my fingers. I’ve had tingling fingers pretty consistently, but yesterday this got a lot worse to the point that I couldn’t peel an orange without a knife and I was a little concerned about being able to play the violin again. The registrar comforted me slightly by saying that this was due to the vincristine and is fairly well documented, although It might take 6 months to dissipate, it would go eventually and he increased my dose of amytriptiline in order to help minimise the sensation.

Day 54-57 Chemotherapy

I’ve been back on it for a few days, and am starting to lose track/energy; Rituximab, Vincristine, Doxorubicin, 3 days of Cyclophosphamide and yesterday I had another intrathecal injection of Cytarabine. Gladly the procedure of ‘very thin needle’ and ‘4 hours lying on my back’ seems to work ok as I have another booked in for tomorrow afternoon. I feel a little light headed, tired and my bones ache, but I feel a great deal better than I did during cycle one.

Bruised knuckles
Bruised knuckles

I can also feel the peripheral effects of my chemo coming through; my skin is dry, mouth claggy and my knuckles are turning brown. The heady dizziness is disorientating, and I’ve spent most of the last few days staring at newspaper supplements and the wall or mindlessly watching TV shows that probably wouldn’t have much impact if I was fully coherent. After tomorrow I have a few days break in order to prepare me for 24hr Methotrexate infusion. I didn’t enjoy this last time, so I’m planning to get up and about as much as possible and try and shake myself back to normality so that I have the best chance of getting through it.

Trying to sleep

The room is hot so I have the window slightly ajar. The alternative is the fan, but as sleek as it looks, it’s noisier than the dark outside. My head is still throbbing a little as I drag myself under the scratchy white sheets. I no longer have the energy to remove my pyjamas as I drop my head into the pillow. I hold the button slowly reclining the bed into its familiar prone position. My top crinkles beneath me which I know I’ll regret in the morning, but I can’t pull myself around too much without tangling the Hickman line in my chest. It has become a familiar appendage, hanging against my skin. I rarely notice it until I lie on the clamps which dig unforgivingly into my flesh. I reach to the call button and switch off the light.

Bed panel

Nuzzling my head into the corner between the pillow and the side panel, I stare at the warm LED glow shimmering across the mechanical grey stucco plastic. Finally I close my eyes. The darkness is noisy.

I can feel the throbbing of my joints as my blood pulses in syncopation around my body. The repetitive flick of the second hand on the wall is suddenly overwhelmed as the deep rumble of a car drives past the window. At the same time I hear a click as the gurgling rumble of the fridge kicks in; an appliance on its last legs. Clinks and rattles join in from outside as a trolley passes along the corridor. I concentrate on the colours behind my eyelids.

The disorientation of dark blotchy reds merge with purples and yellows. My mind lifts as I feel a cold chill through my brain. I can feel my head spinning. I feel weightless and can no longer orient myself against the sounds from outside. I can feel my whole body fixed in position spinning around the room. The dizziness makes me nauseous, but I let it pass as I imagine myself spinning and diving uncontrollably, bouncing off the walls. The exhilaration increases my pulse momentarily as I finally drift off to sleep.

How to make a rigid presentation box

In preparation for Valentine’s day, and as I’ve been stuck at home for the week, I thought I’d make a rigid box to go with a home made gift I was planning.

Although readily available from the shops these days, making your own can mean you can be flexible with materials, colours and sizes and will make the difference between a cobbled together design and something that looks like a gift to be kept.

Talking to traditional box makers, you’d think it was a dark art, but following some basic tips and a bit of practice, it can be a satisfying way to add a bit of luxury to your home made gift.

What do you need?

Things you need

All the tools can be found at your local craft shop or DIY store and are as follows:

Tools

  • A sharp blade, I prefer a scalpel but a craft knife would work.
  • Steel measuring rule
  • A sharpened pencil
  • Masking tape (this needs to be the paper type)
  • Adhesive. A strong spray mount can work well but make sure you have a ventilated area (or the garden) close to where your working.
  • A firm surface to work on (I’m working on the dining table with a cutting mat to protect the surface)

Materials

  • A sheet of Rigid pulp board: I’m using a grey board which has a black coating on one side. The material needs to be between 1 & 2mm thick (1000-2000mic or 0.04-0.08″). One side of the board will be visible on the inside, so you can coat this or use a coloured or pre-coated material as I am, but these boards can be expensive so a solid grey or display board can also be used.
  • A covering material: I’m cheating by using self adhesive material, but any substantial paper such as wrapping paper works well. You don’t want to be able to see through it and the adhesive needs to stick well, so this may need some experimenting, but if it’s paper on the inside, and not too thick, you can’t go far wrong.

The Method

Step 1: measure the base.

I like to use the edge of the board to keep my lines square. Start by drawing the base panel offset from the edges by the depth of the box.

the side that we’re drawing onto will become the outside of the box, so if you have a coated side, make sure this is face down.

Marking up the base
Marking up the base

Step 2: Measure the sides

The long sides of the box are the same length as the base, so just extend these lines out from your base. The short sides need to be stepped outwards by the material thickness. For me this is 1.5mm, and this allows the material to overlap in the corners. Extend and join the lines to form a cross shape.

Marking the side panels
Marking the side panels

Step 3: Cut out the board panel.

All the outer lines including the short (1.5mm) step should be cut through. The 4 lines making up the base panel need to be scored half way through. This takes a bit of practice but I would suggest several gentle strokes testing each time. If you’ve cut through far enough, the panel should fold neatly. Be careful not to cut too far through as the corners will be too weak.

Cutting and scoring
Cutting and scoring

Step 4: Forming the box

Taking some neat lengths of masking tape, fold up the sides and join them together like a but joint with the shot edges overlapping the long edges. This will form the main structure of the box so it’s important that the tape is firmly stuck.

Taping the corners
Taping the corners

Step 5: Mark the covering position.

The covering needs to fold over the edges onto the inside by about 15mm (1/2″). Normally I’d draw this out on the CAD table but if you use the made up box as a guide, this is not too difficult to draw by hand. I have a grid on the backing paper of my covering which helps to ensure it’s square, but using the edge of the material (and careful measuring) works too. Using a ruler, position the box 15mm from your starting edge, then roll it over so that it is sat on its base. Measure the distance from the edge and position the box the same distance from the short edge.

Measure the turn in
Measure the turn in
Position the box 1
Position the box 1
Position the box 2
Position the box 2

Step 6: Mark the corners

place a dot at 45 degrees out from each corner, about material thickness away from the box. This will be the starting point for our layout and will help us re-position the box later.

Marking the corners
Marking the corners

Step7: Drawing the wrap outline.

From these dots, we’re going to create a kind of cross shape with some extra flaps to make it neat.

Start by joining the dots to form a rectangle. Then mark diagonal lines outwards from each corner about 25mm (1″) long. The long sides of the paper, will wrap up and around the corners onto the short edges by about 15-20mm. The diagonal lines form the start of these new flaps.

Using the outer flap distance you measured before, draw the outer edges of the wrap by creating a rectangle equi-distant from the base rectangle.

You can now form the long sides of the box by drawing vertical lines offset by 20mm and meeting the diagonal lines towards the middle.

Drawing the wrap
Drawing the wrap

The short sides need to be cut in from the corners, so that they can fold over neatly inside the box. Measure the inside dimension using the measuring rule and draw parallel lines offset from the base panel and extended outwards towards the outer rectangle. At the corners draw a V shape so that these parallel lines meet the diagonals of the long edges at a point.

Measuring the short inner edge
Measuring the short inner edge

Step 8: cut out the wrap.

Using the ruler and following the lines you have drawn, carefully cut the wrap. You may need to change the blade to make sure you have a neat edge. You will be left with a shape like this:

cut the outer wrap
cut the outer wrap

Step 9: apply the adhesive

if like me you’re using self adhesive material, carefully remove the backing. You may find the material is a bit curly so perhaps leave it under some books for a while first to stop it sticking to itself. If you’re using spray adhesive, you need to be quick here. It’s important to apply a good even coat, but note that the glue starts to set off quickly so read through the next steps carefully and maybe practice first as it is important to make up the rest of the box before the glue dries.

Step 10: Position the box

Position the box
Position the box

Place the glued wrap face down on the surface so that the glued side is up. By aligning the corners of the box with the V shapes you made, carefully and firmly press the box down onto the wrap. Quickly check and smooth any bubbles out, and place back down.

Step 11: Fold up the long edges

Start by pulling the centre of the long edge upwards tightly then using your other hand smooth the wrap outwards towards the edges to ensure there are no ripples. Fold the angled tabs around the corners and press down firmly. Repeat for both sides.

Fold up the long edges
Fold up the long edges

Step 12: fold down the turn-ins

Next you need to fold the turn ins down. I like to make a short upwards cut in the corners to make this easier, especially with thicker materials as it relieves the pressure. Start by folding the corners down, then move to the middle and press outwards. You will need to be firm to make sure the adhesive sticks and that the corners are neat. Repeat for both sides.

Folding the corners
Folding the corners
Folding the turn-in
Folding the turn-in

Step 13: Fold up the short edges

Now the short edges can fold up and over and cover all the tabs. Work from the middle outwards as before and press the turn-in down firmly.  The cut back that we drew earlier should ensure that you have a nice even seam at the corners. Repeat for both sides.

Finished corner edge
Finished corner edge

Step 14: making the lid

The lid is exactly the same and follows the same steps as before. This is where you can get creative. I’ve chosen a short height lid like a shoe box of about 30mm deep, remember that the base panel of the lid needs to be bigger than the base box, so measure the outside dimensions and add a bit of room for friction (a millimetre or two) to each side. If you want the lid to be full height, use the same depth as the base. You can also try contrasting colours or prints, ribbons or filling materials. I went fairly plain as I was limited to what I had in the cupboard, but the materials available these days mean you can create some really nice effects.

 

Finished box and lid
Finished box and lid

…most of all have fun!

Valentines gift packaging
Valentines gift packaging

Recovery Day 48-53

It’s been about 2 weeks now since my last round of treatment, apart from 2 days in hospital in the middle of my recovery period, this has been the longest stay at home since the end of November. It’s a strange feeling, and as the saying goes, the time has flown. I also realised that I haven’t driven once during that period, which for someone who used to clock quite a few miles is also a little strange, but I think I’ll pick it back up again!

Having mostly frittered the time on needless procrastinating, mindless TV (I even watched 2 whole episodes of Doctors!) and computer games, I feel I’ve wasted some of it. I’m sure most people (and definitely my consultant) would say that it’s important relaxation time, although it’s usually against my nature.

I was originally due to go back in to hospital on Sunday/Monday. In the seemingly haphazard, last minute approach that I probably wouldn’t accept from elsewhere, but have started to get used to; I had a call yesterday (Thursday) from the hospital saying that a bed had come available and they’d like to get cracking.

This terrible timing was a little frustrating for 3 reasons:

1: I intended to hand make Liz’s Valentines gift which I now had to rush in a day rather than span over a few days as originally planned.

2: I’d just received a second hand copy of Goldeneye for the wii in the post, and was looking forward to some nostalgic bond reenactment.

3: I was due several visits over the weekend from friends and family, which I now had either to cancel or relocate. (I did, however, cheekily combine my visit from Owen last night with a lift to the hospital for which I was grateful)

From the comments by the nurse, however, it sounds like my consultant had made a note on my file about the delays during my early phases of treatment and wanted me to keep on schedule. I am, on reflection, glad of this. A bit of frantic hassle now will lead to my treatment being completed quicker and more effectively meaning I can return back to a renewed sense of life.

So for now, I’m back in ward confinement on R-Codox-M starting with the R for Rituximab which has so far been running for about 2.5 hours with another half to go…

Day 44-47 Recovery Period

Blood then home

On Wednesday morning I was told that as I had no serious symptoms and a normal temperature, they were happy for me to go home after the transfusion. There were 3 bags of blood required including a flush between each and a process of admin (I think they have to order each as they need it). The first starting at 11:00 meant that I would be in hospital until about 20:00. Interestingly, although they know my blood type, they have to perform an additional “cross matching” exercise the same day. As well as blood group, they also refer to antibody levels.

My mum arrived just before 8pm and I went home fairly promptly; the nurses had organised my discharge notes and the pharmacist had delivered my bags of medicines by about 6 even though I was still plugged in- I think they must have needed the bed!

Back Home

Thursday morning I felt revitalised. I think during the gradual decline I hadn’t realised how much the anaemia/neutropenia/thrombocytopenia had affected me.

I wasn’t sure whether the nurse was due as she was previously booked in for Friday, but she arrived promptly at 10:30 to administer another shot of Lenograstim (some nurses refer to this as GCS which is granulocyte colony-stimulating) which has been extended for a further 10 days.

I knew I felt better as I decided to tidy the living room a little which has become cluttered with pharmaceuticals, dressings and solutions.

Pharmaceuticals
Pharmaceuticals

I spent the afternoon filtering through work e-mails which had filled my inbox. I also started working on some sketches for a whisky project that was pending although an email popped up Friday morning saying the customer didn’t have any budget so I decided not to complete or submit these.

For the rest of the weekend I’m looking forward to relaxing in the traditional sense, rather than through the necessity of not being able to do much else.

How do I Feel?

I generally feel well although waking up this morning was hard work. I can feel the effects of the Lenograstim again; it has the tendency of inducing bone and joint ache similar to how you feel when you have flu. I can also feel the back end of the last Chemotherapy session creeping over me; the tips of my fingers are very numb and tingly (a bit like pins and needles) I also have a similar sensation in the tip of my tongue. My ‘fissure’ seems to be subsiding and my recent bathroom visit was much more manageable. At it’s worst, I felt like I had been eating broken glass, so the knowledge that this was a temporary experience is a huge relief. Finally, and this is difficult to pin down to my treatment or whether it’s just tiredness, I have a kind of cloudy brain feeling. Although I feel awake, it’s as though I’m viewing the world through an obscure experimental movie like ‘Being John Malkovich.’ A temporary cloud hovering over all my senses I hope, but this feeling was much worse earlier on in my treatment.

I am repeating the R-Codox-M treatment (cycle 1-3) in a week’s time. I was told that the chemicals are accumulative. I’m hoping with apprehension that the symptoms aren’t accumulative too.