"Hey, nice veins"

I've not been posting so often as I’ve had everything at least once and any treatment/experience I have are already mentioned in previous posts. In a nutshell I’m waiting for my final scan and results next week but in the meantime, I’ve had 2 outpatient rituximabs and a pent-neb as well as regular blood tests - the nurse was in awe of my ‘lovely veins’ (haematology was obviously more than a job to her), she was very complimentary of my arm and went to get her colleagues to show. It was the most unusual compliment I've had since the nurse at Toghill complimented me on the shape of my skull after I shaved my head. Both of these compliments were at hospital and would have a more worrying tone out of that context.

THE Date

I now have a date for my final PET/CT scan!

As a follow up to the previous post, in addition to the meeting on Wednesday 3^rd July, I now have an appointment for my PET scan on Monday 1^st July. This is the scan where they give me irradiated sugar and use it to look for cancer in my entire body. The results will be ready in time for the Wednesday meeting when they will tell me. Exciting stuff (not sure if exciting is the word actually)!

Endgame

The clinic meeting today with the consultant gave a bit of a clue as to when the end PET scan is as well as some more therapy. I have 2 more courses of retuximab on the next consecutive Tuesdays and another clinic meeting in about 3 weeks in which we will discuss the results of the final PET scan. This will determine whether I have cancer or not. I may also have another intrathecal injection before then. I’m hoping it won’t be necessary as I've been having headaches since the last one and I’m not really happy about more chemicals going into my nervous system. Either way, the final scan will be in 3 or 4 weeks time.

Ding Ding!

Ringing the bell was something that started in the children’s ward where they’d get to ring a bell to celebrate finishing their last chemo. I don’t know if I get a real bell or just a symbolic bell but either way, I just had confirmation that I have almost had my last chemo!  Ding Ding!

It’s not over quite yet as there are at least 2 intrathecal chemotherapy injections in my spine yet but I don’t really count them because they’re over and done with quickly and there haven’t been any side effects previously.  Also, the effects of the ‘real’ chemo last time took 3 weeks to clear and are only just (painfully) coming into effect. The doctor was sure it would be very much quicker this time due to the nature of the chemo being CODOX, not IVAC. As always, I'm crossing my fingers he's right.

One for the road.

I've been discharged! Yep. That's it. I’m getting out. My neutrophils are just high enough to see me out but I am having a blood transfusion beforehand to wish me on my way. I still have 2 intrathecal chemo injections, a meeting with the consultant, observations, pet ct scan and results before I’m totally clear but they're daycase visits so I’m no longer an inpatient and sleep in my own bed.

Hospital Food

Further to an earlier post about learning about nutrition, I have taken an online course on the basics of the subject to further my knowledge on how what we put into our bodies makes them work or fail. It seemed a relevant subject to be studying in the bed of a haematology ward. I’ve also spent a lot of time trying to reconcile the hospital food that I’ve been receiving with the health situation of its recipients. Don’t get me wrong, the food is reasonable, the staff are lovely and most of the food is probably what people want and may well eat at home. Its good comfort food. But it isn’t healthy. In fact, from what I think, it seems to be counter-intuitive to the improvement of patient health. I don’t want to rock the boat of those who hold my life in their hands but I felt it was noteworthy. One could argue of course that patients have spent 50 years doing the damage and a month or two of chips isn’t going to make a difference but there must surely be some uneasy consultants / dietitians.

Half term.

Half term was great. I’d predicted (wrongly) that it would coincide with my most recent round of chemo and as such, I would be bed-ridden for the entire week with my daughters. It had coincided but due to the nature of the chemo, I was not neutropenic so was allowed out and there were large gaps between intravenous infusions so many of the days were free for me to go and do activities with my lovely family including my sister and nephew. Rowing on the lake, crazy golf, farm petting. All good memories that I didn’t think I’d get to do. It wasn’t ideal as I was still based at the hospital in the mornings and nights but much much better than I’d expected.

No updates.

There's been a half term and a break from my blog posts. Not because I’m on half term but because either I’ve been allowed out of hospital and had fun with my daughters or because I’ve NOT been allowed out of hospital and there has been little new to report. Lots has happened but I’m so used to having a blood transfusion first thing in the morning, an intrathecal methotrexate spinal injection in the afternoon and various chemotherapy drugs pumped intravenously the rest of the day that it would just be repeating things I’ve already mentioned previously. Suffice to say, the saga continues. 

Morph

I have all these big medical words in my head but always a total mindblock when it comes to remembering the word, “Morphine” which I’ve needed to ask for a few times to relieve a very debilitating pain. I’ve put a picture of ‘Morph’ up here to remind me. There's no point asking for methane or methotrexate or methodone as I don’t want any of them although I guess some of them may work. I just need a reminder.

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)