For Everyone

The sound in my room is most often guided hypnosis taking me through soothing ambient sounds on an astral journey to peace, rest, replenishment and deep sleep. It is immensely chilled out. The sounds from the room adjoining mine are of very heavy chains being rattled as the prisoner, literally chained to his bed, adjusts his position. He has 2 police to guard him 24 hours.   The NHS truly sees it all here!

Believe

The consultant nurse is called Faith which I thought was a good name for the person who introduces people to the cancer ward on their first day. As my treatment nears its initial end, I had my observations done last night by a new man called Believe. I've taken that to be a sign. Must be.

Light at the End of the Tunnel (or is that a train coming?)

So, three hours of chemo each day until early next week when i get two days off (Monday, Tuesday or Wednesday) before they bring out the methotrexate. 

I've had today's Chemo (half an hour's cyclophosphamide) early to fit in an intrathecal (spinal) methotrexate injection. I'll have a blood transfusion again (!) tomorrow which will eat into my free time but then I get another chunk of day up the garden in the sun so it's relatively great stuff.

I should also be healthy enough to entertain my wider family next week which is half term. At least before Thursday and / or Friday which are likely to be full days of methotrexate  and will take at least 2 days to clear while, at the same time, making me ill and neutropenic. However ...  after that, there should - SHOULD be no more chemo so there is a potential end date of 3rd June. The quickest it could leave my system would be the 8th June when I could be able to leave the hospital chemo free.  It'll be another month before they test me then to see if I'm actually Cancer free which I am already getting worried about the test and results. I'm already placing high hopes on the results of course but there's actually quite a while to sit it out here first.  It's been 4 months so far which I think is long enough to get to know the place. And possibly to get a bit institutionalised. Of course, I'm well aware of the much greater lengths of time some people are here and I'm being careful not to get complacent.

Chemo Lite?

Good news today - my chemo started and took only a few hours and looks like it will be that short each day of it except for 2 days off in the middle. I’ll be living at the hospital but I should be free during the days depending on how I feel and how my blood reacts. This is good news as it will include half term week with my girls who I didn’t think I’d see much of and I’d like to do things with them. I’m not making any plans of course – I’ve learnt not to, but I’m hopeful that I’ll get some quality time, rather than hospital time with my children even if it’s playing in the park or shopping. I’m hopeful but I've been here long enough to know that things don’t always go to plan here.

We’ll see how I react to the drugs of course. the timings may be nice but the chemo could be horrible. Having no previous reaction to the Retuximab though meant that it lasts 1.5 hrs rather than 3hrs. It  makes me drowsy but that isn’t a problem. This was followed by Vincristine for only 8 mins and Cyclophosphamide for half an hour then some exciting injections of suspiciously bright red liquid giving my pee a worrying colour. Flushes and faffing included, the whole thing should take less than 3 hours each day at about 6pm until the 29th May when hopefully it will all end! Hang on... that's a plan. I hope this one works.

Inside no. 9

I had a blood transfusion mid day as an outpatient but was told to bring my hospital bag in case there was a room available now that my blood is strong enough to withstand another round of r-CODOX-M chemo. There was a bed free so I moved from outpatient to inpatient to bagsy room 9 at Toghill (I’m trying to sleep in all the rooms – I've done rooms 1, 4, 5, 7 and 11 already). This was always going to be my ‘last’ chemo but the staff here have started saying “hopefully” in the same sentence to prepare me for the possibility that the final result may not be ‘all clear’. Either way, the sooner I get on with it, the sooner I find out. I’m yet to have any treatment and I’m still waiting for a consultant with some chemo but at least being here means I have a room and better access to better pain relief, the absence of which marred some of my week at home.

At Home with my Daughters

Well, the weekend is over and I can’t remember the last time I greeted my daughters at my own front door so it was nice to do that on Saturday. We had a fairly lazy weekend (lunch at a cafe, playing in the park, bonfire up the garden, Dumbo at the cinema, playing on Wii etc) as I’m still not 100% but it was nice for all of us to spend time in familiar surroundings and putting my children to bed again. It was good for them to see me not in a hospital bed which they will be doing over half term next week.

Summer

Today was a brilliant day. I had to go to hospital for 11.30 to have a blood test but was out by 12.30 and went immediately to rest up the garden, then later, to the allotment for most of the day. I was very tired and had a headache all day but given that I had been in a small hospital room for over 2 weeks, I was happy to sit in the allotment and feel the sun on my face and hear birds.

Flopping at Home

From my hospital bed, I’d pictured myself at home doing the normal things I do at home but from carrying my bag from my hospital bed to the car I knew I wasn’t going to be doing much. I just wanted to sleep and when I did anything (anything!) I was out of breath and exhausted.  My first port of call after entering my house was to flop on the sofa where I stayed . 

The hospital let me out based on my neutrophil count which is whether I can fight any infections while I'm out. They don’t base it on haemoglobin which I’m grateful for as I wouldn’t be allowed out. Haemoglobin carries oxygen to the muscles. When you do exercise, your muscles need more oxygen than they are getting and you get out of breath etc. With so much less than normal haemoglobin, I feel like that much sooner. Like doing anything! So I’m going to spend the week producing more of it I hope so I can act normally. Hopefully even at the weekend when I have my daughters and they’ll see me looking more alive.

So today got up late and sat in the sun outside. That’s pretty much it, and apart from my blood test tomorrow, I expect to do something very similar.

Making an Escape

On Friday night the consultant said I could go immediately after a transfusion of platelets (and maybe red blood too) or I could go first thing Saturday morning if I preferred. I thought it would be easier to leave first thing in the morning.

By 9.30 pm, there was no sign of the platelets so I went to the reception desk and had this conversation; “I’m due some platelets and its getting late”, “no you’re not”, “The consultant said I was”, “well he didn’t write it here so you’re not prescribed any”, “when can I have some?” “sometime tomorrow.”

I waited until the morning, had my bloods at 6am and had the results at 11am, then had this conversation with a new consultant who came to tell me my neutrophils were up to 0.7 which was good for going but also told me I needed platelets which I’d known for some time. We had the following conversation; “can I have some now?”, “if there are any”, “aren’t there some already from last night?”,”there were but they went unused”, “I know! can I use them now?”, “if they’ve not been used by someone else”,”If there aren’t any, when will I get some?”, “Some time today when they come from Sheffield”.

I was feeling more trapped in hospital since being told I could go home and the day passed with me doubting id be out even today and I had my doubts I’d get out evne today but by 7.30pm, I was back home which seemed strange yet familiar.

Maybe tomorrow I'll get to visit home.

Today my neutrophils were 0.46, they should be 1 but anything over 0.5 and I can leave. The consultant said if the other bloods looked ok (and they should do), then he’d let me off the 0.04 and let me go tomorrow. Meanwhile my platelets were 11 and should be over 70 but that wouldn’t restrict me from going home. 
I had a platelet transfusion last night and am due a blood transfusion tonight (or was it the other way round) and more blood tests in the morning to see if I can be free.

I have to come in to daycase on Monday for blood tests to see if I am safe and again on Thursday to see if I’m strong enough for the next (AND FINAL) chemo which will start on Monday if my body can handle it!  This unfortunately means I’ll either be on chemo or recovering from it during half term which I was hoping to go out and be entertaining (or at least awake) for my children.  Typical but looking at it over a longer term, it’s only a short blip in our lives and if it’s making me better then I can’t really complain can I?

American films about chemo alternatives

Most of the alternative cancer treatment films I’ve watched are American which means people are initially faced with paying around $100,000 so they’re more likely to shop around - you can’t just get the first one you see at that price. The natural and other non-chemo remedies were cheaper (e.g. $30,000) and would at least be worth a look. Not involving chemo or surgery would be a pretty big pull too. Chemotherapy is pretty much everything I’ve mentioned in the whole blog (all the drugs, transfusions, pain etc) not the cancer though, of course I’m not letting cancer off.Anyway, I’ve probably learnt too little too late even if I were to find $30k for something like localised hyperthermia (very hot) treatment which kills the cancer by applying localised heat – no chemo or drugs.

(More info on the films on the links page:

http://sarahslymphoma.blogspot.com/p/links.html)

Films on Diet and Cancer

I've been watching a few films on diet which include things to protect and cure cancer and avoid the symptoms of chemotherapy. I’m as cynical as the next person but there are some compelling arguments. Fasting and time restricted eating, according to some films, is very helpful in that our cells reduce to conserve energy but the cancer ones don’t shrink so they are a bigger target for the chemo. Also the recovery from chemo is better. There are conflicting opinions as to what I should eat; healthy green veg and fruit and vitamins etc makes sense but I should also be eating fat and energy to fight the chemo which also makes sense, so eat everything then! And fasting as well. It would be confusing if I were choosing, but I’m nearing the end of the NHS route now so other than keep an eye on my diet, I’m leaving it in the hands of the NHS. It’s all very interesting stuff though and chemo does seem to be a very blunt weapon even if it works.

(More info on the films on the links page:
http://sarahslymphoma.blogspot.com/p/links.html)

Bloods remain too low to leave

My last post was entitled ‘Still in bed’. That was  on Monday. Its Thursday now and I’m still in bed! My blood results (white blood cell count, haemoglobin count and neutrophils) have got worse each day (actually the neutrophils haven’t got worse because they’re resting at zero!) despite countless blood and platelet transfusions. I’m not sure why but apparently, it happens. I’m on day 23 of my methotrexate chemo and I was out by day 10 last time. Apparently it has been known to take 7 or 8 weeks, and that's just one round. I'm holding onto the fact that the next one will be my last one but its taking its time and if I’m this weak now, then I won’t be well enough to handle another round for a while.  I’d previously mentioned that I had to stop after going upstairs for a break. I’m currently having a rest after walking across the room. It feels like a real work-out which confuses me because I still think I’m healthy. Clearly I’m mistaken.  Anyway, there's not much of an update since the last one; blood transfusions, platelet transfusions, pent-neb but mainly sleeping. Seriously. Lots of sleeping. Hopefully I’ll have an update with a positive vibe soon.

Still in bed

Well, its Monday now and I haven’t moved since my last post on Friday I’ve been too ill really and pretty much slept except for a couple of hours on Saturday when my girls visited to tell me about the party that I missed. It sounds like they had a good time. They visited again on Sunday for a few hours too. Again it sounded like they had a good time in the allotment. I’m pleased they had a good weekend but it’s a shame I couldn't have joined them. My blood didn’t recover as hoped. In fact it actually got worse for some reason! I'm not sure how that happened given the number of blood transfusions I’ve had recently (another 2 due tonight).

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