Post-Chemo

Had my intra-thecal chemotherapy on Tuesday. I arrived in the hospital at 09:00am. The procedure didn't start until 14:00 and I was discharged from the hospital at 16:30. Been feeling really sick since the chemo and I am suffering from really bad back ache which pain killers don't seem to be helping. Some of my blood counts indicated raised liver functions, so I have to go back on Tuesday to have more blood tests. The consultant thinks it's probably just some toxicity from the chemotherapy.

Chemo tomorrow

I have my next dose of intra-thecal chemotherapy tomorrow at Hammersmith hospital. If things go to plan, I will drop my two youngest kids off at school and then make my way to the hospital. The procedure only takes about 30 minutes, but it always take at least 6 or 7 hours waiting around for the pharmacy (which is now a private company) to dispense the Cytarabine and another long length of time for a qualified doctor to administer the chemotherapy. After it has been done I have to lie flat for at least two hours to try and prevent headaches and back ache. I am currently at work until 23:00 hours tonight so I should hopefully get home around midnight. It's pretty quiet at work which is unusual for a Monday evening peak rush hours so fingers crossed it stays that way.

Day off

Just finished working eight consecutive early shifts yesterday when I have to get up at 04:30 every day to get ready for work. It has been a very busy week, loads of tourists on my station getting confused and lots of asset equipment failures that I had to deal with. I am off today which will probably be spent catching up on the housework and cooking for the kids. My wife has been invited to a friends wedding so it's just me and the kids. Back at work tomorrow on a late shift (15:00 - 23:00) for the next two days, then back to hospital for more chemotherapy.

Hi again

Just recovering from my last bout of chemo which was administered last Tuesday. My white blood counts are still very low so I am still prone to catching infections but my cancer is still in remission although I haven't had a biopsy for some time. Since my chemo my beard has slowly started to fall out again which is a quite a bit quicker than previous episodes. My next chemo is on 21 May for intra-thecal where they have to inject the chemo into my spine to reduce the chance of the cancer coming into my brain.

Bored

On my last night shift and I am so bored. No contractors, finsihed all my paperwork and reports for the week. Have to try and get my sleeping cycle back to normal by tomorrow when I get home at about 08:00 as I have more chemotherapy at Hammersmith hospital.

Back to work

I resumed to full duties about 4 months ago after being given the all clear by our occupational health department. Sometimes, I don't think I was fully ready to resume full duties due to how easily tired I get by never mind. I am on night shifts this week, my first nights for nearly 2 years as I normally swap them with a colleague who prefers nights but he is out of the country so I'm stuck with them. Loads of contractors on site pestering me every 5 minutes for keys, water, directions and various other annoying things ;) My next hospital visit for more chemo is on Monday so hopefully all will go well.

CNS Therapy

Four days into the cranial radiotherapy, 8 doses to go. Also on weekly intrathecal chemotherapy wherein they inject cytarabin into my spine. Unfortunately, the cytarabin causes me lots of nausea and vomiting. Nothing much else happening aside from having some kind of panic attack in my local Tescos but the staff there looked after me until I calmed down so kudos to them.

Admitted again

Came into hospital last Monday for a full blood count and to get me dressing changed on my cannula. After getting the results the nurse asked me to wait and speak to the doctor. I had a feeling what they were going to say so I phoned my wife and asked her to prepare a bag of the usual clothes, undergarments and toiletries. They removed ny PICC line cannula yesterday so I will have to have a new one put in before my next round of chemotherapy. Once I am discharged I have a short break from treatment until the 28th when I have to endure 12 days of cranial radiotherapy and four sessions of intra-thecal chemotherapy into my spine.

outpatient

Hopefully I have finished the inpatient part of my treatment and should now be all outpatient chemotherapy barring any unforseen complications.  I have an appointment with my consultant in about 10 days followed by four consecutive days of cytarabin, three rest days then another four consecutive days of cytarabin.

I think after that they are considering performing a week of cranial radiotherapy.

Busy Week

Have a full schedule next week.
Monday - work.
Tuesday - appointment at my works occupational health department for a risk assessment.
Wednesday - work and dental appointment,
Thursday - chemotherapy treatment.
Friday - physiotherapy assessment at Charing Cross hospital with NCS & EMG test.

Back to work

I started work yesterday resuming to light duties, just doing about 3 hours a day, 4-5 days a week initially and then gradually increasing the hours.  For the next couple of weeks I will be involved with Olympic and Paralympic planning and operational issues and passing on the relevant information to my colleagues.

To be honest, I don't think I am ready to start work again as I still have loads of chemo to go and still get episodes of sickness and weakness, but as my kind and considerate HR department stopped my SSP, I didn't have much choice :(

Another infection

Started work on Wednesday which was good.  After work I had to go the the hospital to have a GCSF injection as I am once again neutropenic.

Whilst in the hospital I started spiking a temperature above 39 so I have been admitted again.  It turns out I have parainfluenza so I have been put on another course of antibiotics and also a nebuliser three times a day.

Back again

Had to be readmitted as an emergency again on Friday morning.  I was spiking temperatures at home of 38.7 so after speaking to NHS direct they advised me to get to A&E sharpish.  After they took bloods I was also neutropenic again and had a CRP of +70.

I have been put on another course of antibiotics to hopefully get rid of the infection.  Chemo has been delayed again but as my blood counts are a little higher today they may start the chemo tomorrow.

Chemo delayed

Went to hospital yesterday for my next batch of chemo but they have decided to delay it until next Tuesday as my blood counts were too low.  They installed a fresh PICC line and performed a bone marrow biopsy though.  I have to return later today also for 2 units of blood to help get my blood counts back up for next week.

In the evening my legs gave way again and I fell on my cheek.  Lovely bruise developing.

Things gone awry

Health wise I am in a pretty bad state.  What I assume to have bene caused by long-term use of high dose steroids has pretty much destroyed all the muscle strength in my legs.  My legs keep giving way, it takes me five minutes to get out of bed and I am only to walk a few steps at the time with the aid of a crutch.  The symptoms came in within days so it's a huge shock to the system.

I am due back on Monday to have a new PICC line inserted and to receive 10 lots of chemotherapy over five days.  As well as to have another bone marrow biopsy.

Ouch

Yesterday was a fairly intensive one. In the morning the doctors were preparing to discharge me and to return on Monday. However, they then decided that I had to have my Hickman Line removed as that is more than likely the cause of my infection, and that I should be kept inside.

Normally it is a quite easy procedure and takes about 20 minutes. In my case however it took nearly 90 minutes as it had been in for sometime and it was rather attached to my body. Loads of blood over the bed and lots of discomfit.

Later on the doctor had to return to insert a cannula so I can continue to receive my antibiotics whilst I am still here. The cannula managed to leak during the night so a wee bit more blood splashed around for ones amusement.

They said they are going to insert a new Hickman Line early next week so I can continue to receive my chemotherapy as the chemo drugs are not suitable to be administered via a cannula due to their toxicity.

Emergency admission

Been spending a fair bit of time travelling back and forth to the hospital over the past few days. Yesterday, they decided to admit be as an emergency due to very high temperature, completely

neutropenic and a very probable chest and urine infection.

Bad sickness

Been having to take loads of anti-sickness meds recently due to constant feeling of nausea and vomiting. I am currently on 3 different anti-emetics: cyclizine, ondansetron and also domperidone. Neither of which seem to be having the desired effect, rather just seem to cause more side effects.

Consolidation 1

Back in Hammersmith hospital - ward D7 for consolidation treatment part one which should be 5 days of intensive chemotherapy followed by once weekly chemotherapy for 4 weeks.

BMB

Had my umpteenth bone marrow biopsy today after seeing my consultant. More painful than the previous ones so spending the rest of the day resting.

Have to be re-admitted again on Sunday for the next stage of chemotherapy which should only be for about a week as an in-patient and then return once a week for four weeks for more chemotherapy.