Mouth Ulcers

On TV, if someone is suspected of murder then the police will take a swab of the inside of their mouth to check their DNA against that found at the scene of the crime. I guess the inside of the mouth is an area where cells are sensitive.  The methotrexate chemo blasted all cells everywhere which is why there is a long list of side effects such as losing hair and getting mouth ulcers. Complaining about mouth ulcers seems trivial given the various other ailments I have but the other ones don’t actually hurt and if you’ve ever had a mouth ulcer, then you’ll be able to imagine having a mouth full of them is worth a moaning blog post. I have Difflam mouthwash but its just a matter of time to wait for them to go. In the meantime, no smiling/eating/ talking.  And for the record, I’m not suspected of murder.

Personal recalibration needed

I've been underestimating myself.  Whether its the cancer, the chemo or not getting any exercise at all, I’m very unhealthy. I need to recalibrate my limits. Because I feel ok, I think I can do the things I used to be able to do but I’m seriously limited now.  I've just spent an afternoon with my daughters which was great. The doctor had told me I was neutropenic and borderline as to whether I could leave hospital at all. He recommended against it but given this was a rare time with my daughters, I went out, stayed local and avoided germs where possible.  Other than walk and sit in the park, I didn’t do anything but felt exhausted when I got back and slept as soon as they left. Yesterday was similar. I went home and we planted some plants in the garden.  Not serious gardening but again, exhausting.  Its reasonable I guess given that I’m ill but I’m not used to it at all and need to make adjustments. 

I think the same may be true in terms of people.  I’m not used to talking to people and communicating effectively.  This kind of recalibration may be harder to achieve.

Great recovery from methotrexate

I had my daily meeting with my consultant who said I'd done an amazing job of recovering from the methotrexate and no longer need to be on a drip (or have my drink intake recorded and my wee output measured for amount and ph) and, in fact, can leave the hospital for the day. Its a reasonably small window between my recovery and the inevitable drop in neutrophils (probably tomorrow) which will mean my immune system will be very low and will need to be monitored in hospital. He said we’d need to take it day by day and there’s no saying what tomorrow (the weekend with the girls) will hold. Either way I’ll have to be in hospital overnight but ... I’m free today!

Even better news was he reminded me that after I’m totally over Wednesday's methotrexate then I’ll be Half way through the entire treatment!

Shopping and dining out for a few hours in Nottingham with my mum then back ‘home’ to hospital for food and a DVD. I think tonight's movie will be Philomena.

Phenolic acid

I’m now on phenolic acid injections every 5 hours as well as constant saline drip replaced every 6 hours. Both of these treatments aim to help me to recover from yesterday’s methotrexate. Recovery is monitored by measuring the amount and ph of my wee which is by the bucket load!  Phenolic acid sounds scary but actually its found in the skins and seeds of plants and would be part of a natural plant-based remedy but of course, this is to mitigate the effects of the chemo rather than fix the cancer. I’m all for hippy based solutions but when I get cancer – I want science. 

What is chemotherapy?

I thought it was about time I asked a question I've been wondering for a while - “Why are you injecting me with such serious poison?”. I got the following answer which just about explained the whole thing to me: Chemotherapy works by killing cells (with poison) .  This kills all cells but  cancer cells grow faster so it kills them sooner.  Like lawn mowing taller grasses. Eventually once they’re gone, the chemo stops and normal cells can continue to grow. Hair and skin cells also grow fast so they’re collateral damage in the wholesale onslaught of cell killing.

There are a number of different drugs involved in chemo to try to offset the mass of killing of normal, non cancerous cells and to mitigate the effects of losing healthy cells.

Wigtime

There is a small amount of money available to buy wigs for people who have lost their hair to chemotherapy. It seemed very generous until I saw the prices of wigs. There's a company who sell wigs and have an arrangement to come and discuss and show some of their wigs. I’d arranged to meet Steph, the rep to have a chat and try some on. My mum and neighbour joined the party to help me judge. I was just about up to it after being completely knocked out by the methotrexate and feeling very seasick. I woke up enough to try a few on but it wasn’t the Paris or Milan show I’d been picturing.

Dial M for Methotrexate

Prehydration started last night at about 11.30 and will continue long after the methotrexate which I had  at some point this morning.  Assuming these don’t make me too unwell, I should be well for Steph, the wig lady to visit with some wig samples to try on.

Methotrexate is a chemotherapy agent and immune system suppressant. It is one of the serious ones that make hair fall out, skin dry, mouth ulcers etc. 

Retuximab

I’ve just met with my consultant and learnt that I’m having retuximab today whenever it comes in and then (as I knew) Hydration tonight – ALL night on a drip and collecting all my wee to test amounts and acidity. Both of these treatments aim to prepare me for methotrexate tomorrow which is short in itself but requires serious monitoring and lots of water and kidneywork to get it out of my system. I was quite sure that I’d if I did nothing but drink and wee for a few days then my Neutrophils would be high enough to get out for a weekend with the girls but today the consultant was fairly sure I would NOT be out for the weekend. He said hopefully by the weekend after!

So the window between the midday retuximab and the evening's prehydration is relatively small but its the last of my free time for some time to come!

As it turned out there was no retuximab and no explanation why not. Some misunderstanding somewhere meant I was waiting for nothing. I had a good (although short) afternoon looking through second hand shops nearby buying DVDs, headscarves and junk. Which was nice.

Vincristine

This morning was supposed to be a very quick dose of Vincristine for about an hour and then another free day. (I’ve had it before without side effects so hopefully I can handle today’s). There was a delay because it arrived late and my PICC line into my arm is blocked (having my bloods taken manually with a needle really made me appreciate how great a PICC line is)

 By 2pm the Vincristine had arrived and my line was clear and my bloods were good. So, with nothing else medical for the day I went and ate cake up the garden. An enjoyable sunny day and reasonably relaxing despite the shadow of methotrexate looming.

           

Vincristine is a vinca alkaloid and works by stopping the cancer cells from separating into 2 new cells.

It's the weekend .. and R-CODOX-M

What is strange for me is that I have lost all concept of what day is what. Even the daytime and night time are more of a passive observation from this room. The weekends are quite meaningless usually but this one was different. Chemo was minimal so other than blood test and tablets every morning and as long as I return back to hospital I am free during the day. This was a much needed break from my room and I got to meet up with my old friend Emily for a hot chocolate on the bank of the river in the nature reserve – perfect. Then mother’s day cake with my mum and a lazy, garden centre day.




I hadn’t realised how much I needed a break until I escaped. A bit rejuvenated and hopefully more prepared for Wednesday’s chemo which promises to be side-effective. The consultant say’s I’ll have to flush it out of my system afterwards but may have recovered enough by the weekend when I may be able to see my daughters.


Finger crossed.

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.