Don't be ill at weekends

They say don’t get ill at a weekend and its true. Also, don’t remain ill at a weekend. It’s very different in getting things like pain relief etc. I’ve probably been most ill this last week and being ill at the weekend hasn’t helped.  Typical that it’s a bank holiday weekend! Sleep off the headache is my current policy. My mum made a good point that if I wasn’t ill and I still wasn’t getting out it’d be more frustrating which I guess is true.

Having a pint on a Friday night - blood that is

Another crazy Friday night on the O positive. This follows a pint of platelets this morning to raise them enough to have an intrathecal methotraxate injection.  This was the one they had to cancel last Friday as all my blood counts were too low. My key date was tomorrow, Saturday when I was hoping to be at a party with them. I just have not recovered well at all, the platelet count was only artificially raised to allow the IT injection and that doesn't affect my neutrophils which allow me out of hospital.  I’ve had so much blood, platelets and injection recently, I cant see how I’m not well enough to leave the hospital. The consultant said its reasonably normal to be this slow (though I recovered in just over a day last time) and he thought id be out at some point over the weekend. I'm still hoping to make it to the party at 11am on Saturday but realistically, its doubtful. I'll find out about 10am. Fingers crossed (there've been a lot of crossing fingers lately!).

No update

Well. I haven’t updated for a while because nothing has changed particularly. Still sleeping most of the time, still in hospital, still feeling physically ok just tired. Last Friday’s reasons for postponing the intrathecal were because my platelet count (and every other blood count) was too low despite giving me 2 pints of platelets at the time. All my counts are still low and starting to rise very slowly. The doctor is at the point of cancelling tomorrows rescheduled IT. Not that I particularly want the spinal injection but I have to at some point and it is an indication that my bloods are well enough to let me out of here. The red blood cells are very low making me very anaemic which makes me very sleepy most of the time and very bad at using muscles. I’m exhausted getting out of bed and need to have a rest for 5 minutes after getting dressed which feels like an exertion. Since the last post, I’ve had 4 blood transfusions and 3 platelet transfusions, I’ll have another platelet either tonight or tomorrow morning or both possibly with another 1 or 2 red blood transfusions.  All of this to make me normal following last week’s chemo. I had believed the next AND FINAL!!! Chemo would be on Monday but at this rate it’ll probably kill me so I'd guess it’ll be postponed. The main thing is to spend time out of hospital with my girls this weekend, there's a big birthday party on Saturday so I’m crossing my fingers that I improve in time for Saturday. I finished my last post with I’m going to sleep. I think I’ll probably do the same this time. Good night.

Sleep

As you can guess from my previous posts, my plan was to sleep, ideally through the night since I’d had all the transfusions I needed.  Here’s how it went:

6pm: A nurse woke me to tell me I’d be on fluid obs from midnight (this is where I count the glasses of water I drink and wee in a bucket) I suspected that this meant I’d be on a fluid drip from midnight too which was confirmed later.

6.30 Obs

7pm: I mentioned that my PICC line wasn’t quite right and they’re going to put a cannula in my hand for the midnight fluids. They’ll use the PICC line if it turns out to be ok but they’re putting a cannula in just in case.

7.30 Tablets and confirmation of the midnight drip

9.30: Obs read my temperature at 38 which means regular obs and we’ll see how it affects my 10pm when a doctor will come in and review it.  I may as well stay awake until then...

10.40pm: A  nurse comes in to tell me she’s going to put a cannula in and will remove the PICC line in the morning.  I say this wasn’t what I was told, I’d been told someone would test the PICC line and use it if it worked, if not we’d use a cannula. She said the doctor told her to do it. I said I hadn’t seen a doctor. The doctor hadn’t reviewed it. She said the doctor had been told that it had come out and needed to be replaced. I said that no-one who’d actually seen it had said that and the doctor was going on Chinese whispers rather than their own review of the PICC line. I asked her who the doctor was and she said she hadn’t seen him before. I asked her if he was really a doctor. The nurses went off to discuss things with the doctor.

10.55 Nurse comes and tests my PICC line. Works fine. She re-dressed the PICC line and went to get the medicine.

12.55 Meropenem and gentamicin infused into me and no more meds until tomorrow just obs at 3 and bloods at 6. I’m going to sleep!

Not lovely day continued.

The shivers turned out to be because I had caught a fever and now had temperature of 39. I was asking for blankets to keep me warm and they wouldn’t give me any until my temperature had fallen so I curled up in my coat and single blanket and chattered.  Having a fever meant that I wasn’t well enough to have my blood transfusion which would make me stronger.

Having no neutrophils had made me very susceptible to infection,  to remedy it, they gave me an antibiotic infusion and paracetamol and within an hour I was kicking off the sheets saying how hot I was. Headache slightly subsided but annoyingly still threatening.

By 2am my temperature measurement of 36.9 meant I could go ahead with my 3 hour blood transfusion.  At 6am I hadn’t reacted to the first blood transfusion and had a second one until 9am.

At 10 am I was wheeled on my entire bed to the other end of the hospital (great fun) for a chest x ray. I’ve no idea why but the rollercoaster ride was one of the few things worth staying awake for.

When I returned I slept, then moved to Toghill ward then slept. Someone does something to me (obs, bloods, injection, food etc) on average once an hour but other than that I slept through until my mum arrived at 2 and then I slept through her visit.

Very NOT lovely day

I was due to go into outpatients to have my bloods taken to see if I was well enough to stay at home or if I had to be admitted. I knew before Id set off that they were low. Its usually not possible to judge blood levels but I felt so totaly crap and exhausted at the thought of anything (I had a 5 minute break after climbing the stairs). I seemed to be constantly out of breath. Not through respiratory problems but a genuine tiredness. Anyway the results confirmed what I suspected. The following shows what they’re mainly interested in and what I scored at 2pm after a double platelet transfusion. 

White blood cells safe level 1.0, my score 0.1

Haemoglobin safe level 100 my score 71

Platelets safe level 20 my score 4

Neutrophils safe level 10 my score 0 (yes, zero! How can I survive with zero of anything!!)

I was also due a spinal injection but need a platelet count over 40. Two transfusions raised it from 4 to 20 to 30 but then they refused to give any more giving me a very scary story of why they weren’t. I guess I’ll just have to look forward to the next spinal injection!

So. Needless to say I’m being kept in and monitored. I’m just waiting for a haemoglobin transfusion which hopefully will stop me from shivering (if you know me, you'll know I’m never cold...except for now. Brrr)

Anyway, I’m in the SRU where they take new admissions until a bed becomes available on the correct ward. I'm wearing my winter coat in bed and now I'm about to go to sleep in the hope it eases my throbbing head. Good night. xx

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.