Lovely day.

Well, after being literally on a drip since Thursday, I'm not only released from the drip but also from the hospital. Only for a few days but seriously, it really feels good so moan moan drip, blah blah poor nights sleep, everyone else enjoying sunshine, yadda yadda blood transfusion etc etc, feeling sick except. ..... aaaaahhh! I'm free as a bird. Breathing the air again and feeling the suns warmth on my cheeks. Lovely. Exhausting too but its so nice to be out in the world again, however briefly. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Easter Sunday

Well. I found out this morning that I wouldn’t be off a drip until Monday midday so no chance I’d get home to see my girls. they visited of course and we tried to go outside in the sun for with a ball. I had to take my drip machine with me and the battery lasted about 3 minutes (they’re all old and don’t hold charges) so I had to come back inside and plug myself in next to my bed again. The girls came back to be with me but I’d have rather been with them in the Easter sunshine even if only to watch them play. Still, we had a good time eating Easter eggs and watching the original film, ‘Annie’. They’ve gone now and still on the old drip and a new all-nighter of fluid (mostly water with a few non-chemo drugs)

Good Friday

It’s Good Friday and the weather outside looks lovely. The temperature in this room is hot so it must be nice outside. It’s supposed to be nice at the weekend too which would be nice if I get unhooked from my drip and see my girls. We could go for a walk or something and they can see me other than in a bed. I’m on day 3 of this 5 day R-IVAC which means that unless cytarabine, iphosphoride and etoposide followed by pre-hydration make up some time (unlikely), I will be here over the weekend. Oh well. In the longer term, if it makes me better then I’ll have plenty of walks with them. Enjoy the Easter weather.

Ifosfamide

I’d planned on posting an update yesterday but I was being sick. I’ve reacted quite well to most of the chemo. I've sometimes felt a little queasy but yesterday I was on ifosfamide - watch out for that stuff it's the real deal. Eventually, the nurse injected me with some anti-sickness juice which worked after a while. It was just as well since the timer on the chemo pump said 9 hours left. I'm not sure id have coped with that from 7pm onwards. 

Anyway, all well now and on Cytarabine instead which seems to be sickness free so far. Its quite sensitive to my movements and is followed by an all-nighter which I’m hoping will be less sensitive. Its no fun being woken by a beeper to say that I’ve turned over. (it actually says “occlusion upstream” which means its blocked because I’m lying on it or twisting it. Bear in mind that this is inside my left arm.)

R-IVAC-M in Toghill : Day 1, retuximab

I was due to have a meeting at 10 am Tuesday to see if I was well enough to come in at some point for the next round of chemo (R-IVAC) but the phone rang at 9 to tell me to come in now anyway to stay the week. I packed everything quickly and moved into room 5 at Toghill. I discussed if I could be free at the weekend to see my girls and they said if I started the chemo immediately then 5 days later would mean I could be free on Sunday after the chemo but before the inevitable drop in neutrophils. I pushed to get started quickly and I’ve had the retuximab (the R of R-IVAC) but didn’t manage any more of it. I hope to get the rest of it done quickly but as always all I can do really is cross my fingers. At least I'm in the right place for it. 

This is spinal tap

This is actually intrathecal methotrexate which really makes me appreciate local anaesthetic as once that small sting has been administered then the actual needle going into my spine doesn't hurt. Lots of it feels very... VERY uncomfortable but not quite pain... except when he hit a nerve and Wow! That hurt! It felt like what I imagine a Taser to feel like in my upper leg (no-where near the needle!).  Then, as suddenly as it had hit, it stopped, like a very quick burst of electricity.  

The whole process took about 20 minutes and was eased by entonox (gas and air) which they had all ready for me this time.  Thanks to my dad who took the picture who I don’t think even wanted to look.

Pent Neb

White blood cells are up to 10 so no longer neutropenic which is the main reason they keep me in hospital. Red platelets are still low - normal red blood cells are 100 and over 70 is strong enough for more chemo but mine are 40 so I need to have a few days to recover them and come in on Friday as an outpatient for a check. In the meantime, I’m checked out of the hospital and am a free citizen for a while. They're expecting me to be back to fitness in a week or so I’ll be back on the ward then for the next round of CODOX.

I had a Pent Neb (short for pentamidine nebuliser) today which I thought would be like my nephew’s “puff puff” inhaler but it was an hour in an isolation room breathing first Salbutamol to open the airways and then Pent Neb through an electric version of an inhaler. this is to prevent serious lung infections such as pneumonia. The process wasn't too serious but it took longer than I’d expected. A preposterous bag of medications and I was free of the hospital until I have my spine injected again on Friday as an outpatient.

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.