Entonox (aka Gas and Air)

Today was another Cyclophosphamide in the morning and my second lumbar puncture (intrathecal chemotherapy) in the afternoon which while both were short, didn’t give me any large chunk of time on a nice day. Fortunately, Dr. Bishton confirmed that I’m most likely not have anything until Tuesday or Wednesday and as long I slept at the hospital and didn’t become neutropenic, then I’d be free for a few days. Shame don’t have the girls. No particular curfew as long as I sleep at hospital.


He said I’d have fluids on Tuesday and then a serious chemo, Methotrexate which is the M in CODOX-M on Wednesday (day 10) which I’ve not had before. Side effects are sore mouth, neutropenia, diarrhoea, sickness, nausea or vomiting, stomach pain or upset, hair loss, tiredness, dizziness, chills, headache. Great!


The wig lady is due back on the same day with samples and advice to show me so if I survive the Methotrexate, then I may have something enjoyable too.

Cyclophosphamide

Today was an easy day. Just half an hour / hour of Cyclophosphamide (CP) in the morning (plus the usual blood test and observations) and I’m unattached for the rest of the day. The weather looks nice so I’ll hopefully have a walk round the grounds of the hospital for a bit. Side effects of CP are low white blood cell counts, loss of appetite, vomiting, hair loss, bleeding from the bladder. Other severe side effects include an increased future risk of cancer, infertility, allergic reactions, and pulmonary fibrosis.
Putting this aside, my chemo was over by 2 when my mum visited so we went to a nearby park and walked around in the sun. Very relaxing.

Intrathecal chemotherapy

I’d asked Cath about wigs as she’d previously told me about a voucher to replace lost hair she had told me also that there is a company who come to Maggie’s centre at the hospital to try some on and have a look at styles and what to wear. They come on Wednesdays which unfortunately for me, coincides with my Intrathecal chemotherapy.

The brain has a protection against poison which is usually very useful but as chemotherapy is poison, it is blocked from reaching the brain. So to eliminate ‘nervous system compromise’ intrathecal chemotherapy (IT) bypasses the brains protection by injecting into the spine directly

to the brain.  It should only last an hour but I’d rather be trying on wigs.

IT part 2. Ouch! They said it would be similar to the bone marrow biopsy but less painful. It wasn't. It hurt. Not for long and probably more uncomfortable than pain like the promise of pain either way it was not something I want to do again. It was disappointing when she asked if this was my first one suggesting there would be more. I didn’t ask how many but there will be a number of them. For some reason I declined having gas and air. I shall remember next time not to be a hero. Give me anything you’ve got. If you ever have the choice of having a needle put between your vertebrae into your spine then I suggest you decline.

R-CODOX-M starts with a blood transfusion

I had a blood transfusion for some reason.  It didn’t last long and seemed fine but I had a really bad night’s sleep. I don’t know whose blood I’d been given but they seemed to be very energetic. I slept but was sweating and restless so despite not having a drip in me throughout the night or being tested for obs, I still woke up very tired.

National Space Centre

Saturday with my girls was great. We went to the National Space Centre in Leicester and had a look round rockets and the planetarium. Its a great place and if you're going to escape from hospital for a day then you may as well go to the moon.

I had a few missed calls while I was there from the hospital which were telling me to come in to ensure a room on Toghill ward. So the weekend was split between out and about on Saturday and sitting on my hospital bed with the family on Sunday. Not too bad overall. My parents took them to school.

Leaving hospital (temporarily)

I’m fit to leave hospital today.  They’re going to ask me to be ready to come back on Sunday in order to bagsy the bed for Monday when they’re going to give me CODOX-M. This is a chemo that will last for 2 weeks. (I thought it was a shorter one but apparently they’re both big ones!). I’ve put in my calendar that I’ll be out on the Sunday 2^nd April which is just my guess based on the last chemo.  So it looks like I’ll have a weekend with my girls not in hospital and maybe a few days of normal life.

Neutrophil increase

Good news. Based on my blood test this morning, my neutrophils (the white blood count and immunity indicator) are now 2.3 (normal range is between 2 and 7) so an amazing increase from 0.1 the other day. I should be able to fight off some illnesses. They’re testing this theory by stopping my antibiotics and seeing if I stay well. They’re also continuing to grow my blood – they took some blood the other day to see what grows – this allows them to see bacteria etc in the blood that they would normally miss. They haven’t found anything yet and if they don’t find any tomorrow then I can go home.

Loxley ward

I’ve just learned that I'll be in overnight and over the weekend. I may be moved back to Toghill which would be much nicer but not home until my count is high enough which will be Monday or Tuesday. This will be for a few days (hopefully my weekend with the girls) then back for round 2 of chemo on the Monday.  As well as my white blood count being low (the immune thing), I also have a very low platelet count (its 5 when they like to keep it over 10 or ideally 20). This explains my nosebleed which I'm slowly developing. To rectify this, I'm having a platelet transfusion shortly which will be a drip for about an hour. After which, they'll test my blood again to see if I need another one and hopefully at some point my nosebleed will stop. The platelets are separated from someone's blood and look like a brown sticky/honey kind of gloop.

It looks like I'm stuck here in Loxley ward for a few of days at least.

Neutropenic sepsis

12.00 midnight.

The doctor has looked at my blood test results and says I now qualify as “Neutropenic sepsis”.   I said to the doctor that i thought i knew what both those words meant and that they sounded ‘bad’ but could she clarify that neutropenic means a very low white blood count and thus, immune system and sepsis meant blood poisoning.  She said yes but that it wasn’t confirmed. The results show a very low white blood count and although she stressed, THERE IS NO EVIDENCE OF BACTERIA IN THE BLOOD, they will treat me with a drip of antibacterial stuff as a preventative measure.  This prevents sepsis but doesn't actually make me better. To the question of what I could do to makes myself better, she said just be yourself eat well and drink lots of water and keep spirits up. I'm doing all three of those at the moment although to be perfectly honest there is a certain conflict between keeping my spirits up and ‘neutropenic sepsis’ along with everything else which begins with ‘immuno’.  I’m beginning to think that this is quite a serious  The drip is the same ball and chain as the chemo but she promised me it would be much quicker.

1,00 am: Moved right across the hospital to Loxley ward (near maternity!) for an hour’s drip of antibiotics.

2.15: end of antibiotics

5.am:  observations 

As I have done throughout, I feel fine - a bit tired of course but nothing more that from being woken up every 2 minutes – i.e., not ill-tired or lethargic. Just human.

Hyperpigmentation

I seem to have a dark patch colouration on the side of my face which I noticed yesterday. It looks like sun tan but in a small area. Like after a night out and eye makeup is left on and smudged down the side of my head. I left a message with Cath the keyworker to ask what it could be or if it is a known potential problem she said it was probably Hyperpigmentation and would go away after the chemo.

Hyperpigmentation is a common, usually harmless condition in which patches of skin become darker in colour than the normal surrounding skin. This darkening occurs when an excess of melanin, the brown pigment that produces normal skin colour, forms deposits in the skin.

Neutrophils

I’m at home  for a few days and, as if I loved blood tests, I thought this would be a rare occasion when I’d get chance to go to the GP and offer a blood test which the Transgender Centre would need to determine my trans medication on the 25^th.  No big deal there, I’d just wait a week, get a letter with lots of technical blood info on to take to the gender clinic as usual.  However, it may take a week for the GP to pass these results on but they’re obviously in communication and the hospital called to say the GP blood test had shown that my neutrophils were very low and I needed to be monitored at hospital. No more being at home for a while.

Hair Loss

My hair has been falling out more and more over the last few days. Every time I run my hands through my hair about 50% of it remains in my fingers. I’ve been growing my hair for what seems like years to look more feminine but I think those days are over now. Rather than feel sad every time I run my fingers through my hair I thought I’d give my kids some fun and borrow my neighbours hair clippers and let them shear me. So I now have a new look - Bald or headscarf. There is apparently a wig voucher which I think may end up being a longer term look but for now I’m bald.

Sick Leave

My four week sick leave just ended and the doctor took no time at all in immediately signing me off for a further 4 months!

Greetings from the Space Station

After Skyping my neighbours we decided that it looked rather like I was in a space pod and would be fun to tell their young boy that I was in space rather than hospital.  Aided by the poor wifi connection, the images beamed back from Nottingham city hospital convinced even me.

R-IVAC in Toghill Ward

IVAC Chemo, Toghill.

I’m in hospital again with a drip for a week. There are various bags of chemicals which take between 15 minutes and 24 hours to be pumped into me through a drip and pump into my PICC line. There are 2 lines so they can pump 2 chemicals at once if necessary. They take blood out daily to check it for various things. They also flush the line in between each procedure.

Toghill is great and has a good reputation, there are individual rooms with en-suite bathrooms and lovely staff. There are 3 small meals a day and televisions that don’t work. They do have free wifi though which is very slow but way better than nothing given that the drip means I cant even leave the room for a week. My sister gave me her Amazon Prime details so I can watch box sets on my laptop (which I bought specifically for my sanity in hospital).

IVAC chemo

After a few days of relaxing at home (I’d been signed off work for 4 weeks) I had a meeting with the consultant to discuss when and what the next chemo would be. It would be IVAC chemo and start on Monday for a week in Toghill Ward at City hospital.

The consultants had looked again at the pet scan and the number of locations of lymphoma and decided that the whole thing added up is bigger than they initially thought.

They are changing the treatment from the R-CHOP which I just had to something stronger after finding worrying extra bits of lymphoma. The size, location and biochemistry of them are notable and deposits have been found on my heart, kidneys, vertebrae at the back of neck, the muscle on the back of the abdomen, pancreas, bowel etc etc! All of these are small deposits but signal a more aggressive lymphoma.

The main difference of this is that there is a greater risk of relapse later and of nervous system compromise. To reduce these new potential problems Dr Bishton and Dr Martinez-Calle have decided to change my chemo from R-CHOP to a combination of R-COCDOX-M and R-IVAC. 

It will now take place at 3-4 week cycles alternating from IVAC to CODOX-m twice each and I'll have to be an inpatient, staying in hospital for about 4 days after chemo. The programme will be about the same total length but more intense and I'll be staying in a ward.

Although there is less than 5% chance of nervous system compromise, it would be complicated if it is so they’re going to blast it with the new chemo.

R-IVAC  will be 4-5 days in hospital including the actual chemo and an antidote drug to flush the system. The blood must be clear of the drug before they’ll let me home. This will be repeated every 3-4 weeks.

These treatments will almost definitely make me neutropenic (have a low white blood count) which makes me extremely vulnerable to infection. If I get a temperature, I need antibiotics very quickly and go straight into hospital if I've been allowed home.

The timescale and prognosis are the same (ish) but the journey to get there may be tougher.

PICC line and R-CHOP Chemotherapy

In advance of the chemo, they need to put a PICC line in my arm. They say the way to a man's heart is through his stomach. It turns out, its actually through the cephalic vein in the arm. The PICC line is similar to a cannula which is like a usb port to which they can attach any drip into a vein and put stuff in or take blood out. It differs from a cannula which would normally go in the back of your hand in that it goes on the inside of your bicep and is a tube fed up the vein inside the shoulder to near the heart where any drugs will go very quickly round the body. The doctor guides the tube up the vein using ultrasound which sees everything except nerve clusters which she apologised in advance if she hit one. Blimey that hurt! And in a completely different place to where the line was. The PICC line is quite a permanent thing and can be kept in for 12 months. Its very useful and avoids a multitude of jabs.

My dad took over from my mum as I went in to the chemotherapy room. A room of about 12 comfy lazyboy chairs with drips going into unwell people.  I was to join them as an outpatient for about 6 hours where I played chess with my dad and dozed and sat.  There was a young gentleman and his wife opposite me having the same treatment and at one point his wife noticed the drip bag was leaking and some of the chemo drug was in a small puddle on the floor. The duty nurse moved him then put on goggles, facemask, gloves, overshoes and a white SOCO overall to attend to the puddle. What the hell is this stuff they’re pumping into my veins that they need such protection from?!!! 

At the end I was given a bag of tablets including syringes and a timetable of when to take the tablets each day which totalled about 11 a day and injections along with added complications of some tablets to be taken with meals, some without eating, some not with other pills, some on day 3 to 7, some on Mondays and Thursdays etc. My mother and I drew up a calendar of what to take when.  Something was keeping me awake, I think it was the Philastrim injections.

PET/CT Scan Results

I had a meeting with Dr Bishton’s job-share, Nicholas, who showed me the picture of the inside of my body and any areas we should be looking at. He was pointing at a number of areas on the picture indicated by lighter markings which showed where the radiation had accumulated. My focus, however, was on my brain which was glowing bright white. He then explained that as well as the cancer liking sugar, so do brains so this was quite normal also that my bladder would expect to be holding some too. There were a number of areas that weren’t supposed to have sugar which meant areas of lymphoma, heart, kidney, one lung more that the other and my pancreas.  Also present was my keyworker, Cath who explained that this wasn’t as bad as it sounds, that because it is a blood cancer (and so I’d be treated in the haematology department), it was expected to be in a few places where blood goes (everywhere) and that it wasn’t a case of one cancer (e.g. lung) ‘spreading’ to other areas (e.g. pancreas) so one chemotherapy would get the lot of it. I was booked in for chemo.

PET/CT Scan

The pet scan is like the total recall machine which works like an x-ray except it looks for radioactive sugar concentrations in your body.  The preparation for this is to have a drip of radioactive sugar and wait for it to go round your body. Lymphoma cancer likes radioactive sugar so when the blood has pumped it round your body for about 45 minutes it settles in places where there are areas of lymphoma. Then I lie still on a machine which slowly moves me under a machine which takes a 3D picture of the inside of my entire body.  Results would be ready from this and the bone marrow biopsy the next day.

Bone-marrow biopsy.

Where the biopsy of the lump in my neck had taken a bit of the lump out, this was taking a bit of the inside of my pelvis out through a similar process. I asked if she was going to have to drill through the hard exterior of my bone to get to the marrow but it was more a process of pushing hard into my pelvis bone until it got to the middle then the litter grabber needle would take a tube of red bone marrow out which looked like a tiny worm. She’d given me a local anaesthetic which worked except I could feel everything that was going on (if you’ve ever had teeth taken out with anaesthetic its not exactly painful but still unpleasant) there was some pain as she was pushing so hard into my pelvis that it was clearly having some kind of knock-on effect and had a dull ache over a wide area.