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,

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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

 

Days 19-21 recovery Period

As soon as I’m ‘recovered’ they’ll let me home for a couple of days which I’m looking forward to. I’ve been up and down the scale of Neutropenia over the last few days (low white blood cell count) I think over the last 6 days it’s been 0.5, 0.8, 0.4, 0.4, 0.9 and today it’s 8.7 which means I finally have an immune system!

Unfortunately, in addition to the confirmed flu I had with minimal symptoms (other than sore throat and headache), my temperature was borderline concerning at 38.1 on 2 occasions overnight. With this in mind, I’ve had a series of blood cultures taken whereby they presumably try and grow the offending bacteria in a Petri dish in order to identify what it is. This has the unfortunate result of my staying in the hospital for at least another 48 hours until they get those results back. In the meantime they’ve started me on a different antibiotic to try and help me fight it.

Yesterday I was quite ill and didn’t get out of bed until fairly late in the evening. I managed to eat a small amount but it was difficult to sit up with my headache as it is. I am feeling a little better today and managed to shower and sit up ok without too much discomfort. I am, however, beginning to get a little frustrated with this interminable headache.

Although they’re aware of all my symptoms, I haven’t really talked in too much detail with the doctors as they seem to be busy and distracted at the moment, but I have started to wonder whether this extended break in chemotherapy and delay before round 2 is likely to impact the electiveness of the treatment.

As someone who is usually in control and likes to take a handle on my own destiny, it’s a little difficult to let go and allow others to deal with it for me. I have to concede, however, that the doctors do know more than I on this subject and I rather have no other choice.

Days 16-18 recovery period

Although I try and take pride in my appearance, I would tend not to regard myself as vain or in any way precious about my appearance. In this world of self imagery, high speed transactions and 140 character assassinations, the way we look affects the way people feel about us.

In my mind, there is little relationship between hair style and personality but perhaps in some way it does betray personal style and taste. I thought I would be prepared for hair loss, in fact it was the only symptom the doctors were sure about, but even so, watching your hair fall out in clumps as it has over the last 48 hours does bring with it a certain level of anxiety and self-reflection.

Hair Loss
Hair Loss

Otherwise the last few days have been fairly un-eventful. I’m now waiting for all my platelets and white blood cells to restore to acceptable levels. It was also confirmed from a swab of my throat that I had contracted ‘influenza A’ – incidentally the variant of flu that is not covered in this years’ flu jab and which the chap in the cubical next to me also had (we were sharing a bathroom, so I was less surprised than the nurses at this outcome!) I seem to have coped fairly well with it though, apart from a sore throat and generally feeling unwell, I can say I’ve had much worse with a fully functioning immune system, although I expect the course of intravenous antibiotics and tamiflu probably helped.

I also reached the end of my course of hydration. The relief from the beeping and clicking of the pumps and having to unplug and wheel around the stand each time I went to the toilet or shower was a greater relief than I had expected.

It’s surprising how used to performing a task regularly you get (especially when it’s every 2 hours for 5 days) that you forget how annoying and restricting the task in fact is. I’m sure I’ll re-asses some of my other daily habits when I return to normality!

Procedures- Tunnelled, Central Venous Catheter- Hickman Line

As already mentioned I had my Hickman line inserted on Friday, it wasn’t a lengthy procedure or in fact too painful, but it has made life in terms of blood samples and injections much more comfortable and convenient.

What is it?

The main benefit of the Hickman line over the PICC line is that it has two separate lumens (valves) which means that treatment can be applied while at the same time blood tests can be taken. During my Methotrexate infusion, they could also apply saline solution at the same time to help support my bladder.

the main daily benefit for me is that the exit site is at my chest rather than my elbow which is better for both comfort and daily activities such as having a shower.

The Procedure.

Central Hickman Catheter
Central Hickman Catheter

From about midnight on the night before I was told not to eat or drink in preparation for the procedure. I was taken through to the operating room and asked to lie on the bench. The anaesthetist started to shave my chest while her colleague inserted a catheter into my wrist. She cleaned the area and then applied 3 doses of anaesthetic in a triangle from my neck around the right side of my chest. As the anaesthetic started to react, they applied a mild sedative (to help relax me noting that I still had my severe headache) via the catheter, and prepared the area by applying shields taped to my chest and face so that I couldn’t see the operation (and presumably to collect blood spray). They started by making incisions to the top of my neck either side of my collar bone. She passed a needle through the opening and into a vein which passes from my neck down under my chest into my heart. A guide wire is passed through the needle and advanced into the vein. A vein dilator is then passed over the wire to hold the vein open and make a seal. At this point the performed an x-Ray to check the position. I was fairly drowsy at this point, but was aware of what was going on. The staff reassured me as I went, telling me when to expect tugging and pulling, and talked me through the steps. Next they made an incision into my chest and passed the line just under the surface of the skin up to the site of the guide wire. The line was pushed into position and the guide wire was removed. The pulling and tugging at this stage was fairly strong and although I could feel what was happening, there was no pain, it was just a tugging sensation. After a few minutes, the entry and exit sites were stitched closed and a dressing was applied. The anaesthetist instructed her colleague to reverse the effect of sedation and another fluid was applied to my catheter. I became much more lucid and awake at this point and I could feel my headache again. I was sent back to my bed for a short while. A few minutes later a porter arrived to take me for a chest X-ray. 30 minutes later the doctor confirmed the line was in the correct place and was ready to use. The whole process probably took an hour and I was surprised how quickly it was ready for use. I was expecting to feel pain as the anaesthetic wore off, but the pain was no greater than a small cut. My collar bone was a little swollen and was a little tender for the next couple of days and it’s taken me a while to get used to sleeping with the line in. The top stitches will come out tomorrow (after 5 days) which I’m looking forward to as they’re starting to rub a little. The stitch at the exit site will be removed after 2 weeks. I have also had a bit of an allergic reaction to the dressing which has made the area a little red and itchy, but this is manageable. Re-dressing tomorrow should help relieve this.

Sore Stitches
Sore Stitches

Lumbar puncture with Intrathecal injection

Yesterday, I had an intrathecal injection. I was expecting this to be quite painful and was a little apprehensive after the bone marrow sample. The main side effect for me (although I’m prone anyway) was a massive headache which knocked me out a bit, hence my tardiness in writing. Feeling a little better now though so here it goes:

What is it?

Due to the nature of my cancer, the treatment needs to get round the whole body including my brain in order to target any rogue cells floating around in my blood. In our neck, we have a protective defence which filters blood and minimises the risk of infection to the brain. This mechanism (the ‘blood brain barrier’) also prevents chemotherapy drugs from accessing the brain also.

In order to bypass this system, the doctor performs this procedure which applies the chemical into the spinal fluid which can then circulate into the brain effectively.

The Chemical and how it’s applied

Apparently, this method can also be used for some anaesthetic and other treatments, but in my case the chemical used was cytarabine.

I was asked to lie on the bench curled into a ball on my side. I had to bring my knees quite high and bunch my shoulders over. Explaining the procedure as she went, the doctor said that she’s aiming for the gap between my Lumber L2 and 3 vertebrae between the disc. The spinal column finishes at L1 and is then followed by a chain of nerve endings (like a horses tail) so the doctor is very careful and slow in order to avoid these. By curling up, the gap between the disc and vertebrae is opened up to make the targeting easier.

Once she had found the location and cleaned the area, the nurse applied the first needle which was an anaesthetic (a gentle scratch). She tested the area and I still had some sensation, so she applied a little more, I couldn’t feel the needle at this point.

The first step is to remove a small sample of fluid for testing. They try not to take too much as the release of pressure can be painful, so they just remove a couple of drops. Once this is done, she then applied the treatment which for me was 70g dissolved into a 3.5ml solution. Although being a small amount, she injected very slowly to minimise discomfort.

Once complete, a dressing was applied and I was slowly sent back to my bed. In order to help the chemical travel through my spinal column, I was asked to lay flat on my back for 30 minutes.

How did it feel?

The procedure was in fact pain free. I felt a bit of pressure as although I’m lean, there is still quite a way for the needle to travel. Otherwise and for the next hour or so, the only sensation I felt was a slight light headedness from lying still. After this, however, I did start to get a headache. I’m fairly prone to headaches and I get migraines so I was expecting a headache in some form, but this was one of the stronger types of headache in the realm of serious hangover or post migraine shock- it lasted for several hours and although I slept through it, it returned the next morning. It’s now gone after a period of about 12 hours.

Day 6&7 – rest days

So after a couple of days at home, my spirits are a little higher than they were. I’m still finding walking around the house (especially the stairs) frustratingly tiring and spend most of the day feeling lethargic with my brain working slower than its normal rate.

I’ve spent the time lounging around catching up on Christmas telly and building Lego (ok I admitted my guilty pleasure, and the theme of gifts this year 🙂 ).

I’ve also started to develop a cough along with my tight chest, but it doesn’t feel like an infection yet. I also found that my skin is starting to get quite dry, although this could be due to the interminable hand washing that I’m subjecting myself to.

In other news, it looks like that due to the drunken, clumsy, comedy xmas slipper sporting public, there’s a bed shortage, so I can expect the next few days of my treatment to be spent as an outpatient. I’m not sure whether this is entirely good news, as it means a couple of my treatments (including methotrexate hell) will be delayed, and I’ll be subject to fewer checks. It also means that I’m going to have to rely on Liz as acting taxi for me during her week off work (which incidentally was a coincident well timed!). On the plus side, I can continue to relax in the comfort of my own home.

To add to the administrative mess, I had to send Russell (my brother) back across the hour round trip to the hospital to return an undelivered bag of tablets to the ward. I hope Mrs. Taylor received them in time!

Any side effects?

Apart from the aforementioned, they’re fairly manageable so far. I did however have a shock today after weighing myself. I was a little prepared as I’m visibly gaunt, but over the last 10 years or so, my weight has rarely fluctuated beyond 13.5-14.5 stone (85kg ish) and now stands at 11 stone (70kg) which for someone of my height means that with the impending hair loss I think fancy dress choices will come much more easily (I’m thinking Monty Burns or Nosferatu, suggestions on a postcard…)

Me in a Harry Potter dream sequence (photoshop fun!)
Me in a Harry Potter dream sequence (photoshop fun!)

On the top of the list of possible side effects when signing my consent was the frustratingly contradictory statement:

“Diarrhoea/Constipation”

now, with the position of my tumour and the fact that I’ve spent weeks with both of these I wasn’t sure which way this was going to swing, and according to the doctor, it could be both. The last few days, however, have driven strongly towards the latter. It’s been about 4 days now and beyond a couple of glasses of the inventively named ‘movicol’ solution, it’s getting towards time to raise it with the doctor. I’m due back in the hospital tomorrow morning for a course of ‘Vincristine’ so I’ll probably mention it then!