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.

Almost there

Coming to the end of the third cycle of chemotherapy. Had a few complications one of which necessitated a day trip to Western Eye Hospital where they said that the most probable cause of my eye problem was leukaemia cells pushing my eyeball down. Thankfully, it seems that wasn't the case. The doctors aren't sure what the problem was but it has healed up so no worries there. I also had some kind of reaction to one of the chemotherapy drugs called L'asparaginase which is injected into your butt. Very painful injection and I had difficulty walking and getting around for a few days but that problem is getting better.

Now it seems the doctors are just monitoring my blood etc and I hope to be going home for a couple of weeks in the not too distant future.

Round Three

Been back in hospital for round three of the chemotherapy treatment. I had another bone marrow biopsy a week last Monday and the doctors are happy with the results and it looks clear of cancer cells.

The chemotherapy drug they are using this time round is a drug called Methotrexate at a very high dosage. Before, during and for at least 72 hours afterwards they also give me loads of fluid via the drip, at least 6 litres a day to help flush out the Methotrexate so plenty visits to the loo. The urine is checked for it's acidity and the PH level in order to prevent any damage to my kidneys. They also take extra blood samples every day and send them off to Great Ormond Street Hospital for testing the level of Methotrexate in my system.

Once the levels of the drug have reduced adequately then they will give me the next dose and it all starts again.

Unfortunately, my elder sibling who got himself tested to be a potential bone marrow donor isn't a close enough match so at the moment the doctors are seeing how the chemotherapy goes before they start to look for potential non-related donors on the global database as they say the risks outweigh the benefits.

Last day of chemo

Today should be the last day of chemotherapy for this particular phase, so once my blood counts go back up (especially the white blood count and Neutrophines) I will by the grace of God be allowed to go home to prepare for the next phase of chemotherapy which is called intensifiction which just by the name alone sounds quite daunting.

I will also have to wait for my temperature to come down and stay down, it spiked at 40.1 last night although this was during receiving blood. I hope to have a word with the hospital admin today as everything they have given me either fluids or blood products such as blood, platelets or plasma it has always been very very late so you are constantly getting disturbed during the night which is of course not exactly conducive to rest and relaxation which is just as important in getting better as all the drugs and testing etc.

Neutropenic

My blood counts have been dropping gradually day by day. My red blood counts keep dropping below 8.0 so they keep giving me blood. My platelets keep dropping below 50 so they have to give me platelets and the Neutrophils within the White blood cells have dropped below 0.5 so I am now Neutropenic. I have to wear a mask if I leave the room and not because I might scare people :) and I am on a 'clean' diet so no take aways, no soft cheese, no raw vegetables or salad etc etc.


- Posted using BlogPress from my iPhone

Location:Du Cane Rd,,United Kingdom