One Year all clear.

On Friday 24th July last year, I was finally and officially given the ‘all clear’ of cancer. I observed this on the same date this year in 2020 but it wasn’t until today that I had the test at the hospital to prove it. 

In the midst of stress, one doesn’t see the big picture and focuses only on immediate needs (do I need to eat, wee, sleep, put one foot in front of the other etc).  It’s an evolutionary coping mechanism because the big picture looks so shit it’s impossible to comprehend.  It’s the unfortunate people (friends and family) forced to see it objectively who realise actually how serious the situation is.  There are a few lucky people who get to see both the direct experience and the objective one.  Today, I was one of them.  

It was really a foregone conclusion;  if I hadn’t told them I’d felt ill by now, then there probably wasn’t anything wrong.  Nevertheless, it was nice to be told by someone that I’m officially cancer free. I was essentially going through the motions of turning up, getting prodded and being congratulated - none of which gave me any particular feeling of achievement,  but it was good news! And I was happy! 

It was only when I then walked out of the hospital into the grounds, stood on the hottest day of the year in newly cut grass of Basford Mill Cricket Club that I sat on a bench, turned around to look at the place that had been my home last year and burst into tears. 

This was where I’d lain in my death bed.  .. and walked away from it.  A place I’d been more intimate with strangers than with lovers, been fed and infused, nursed,  helped and hugged. This was the place I’d written my will, where I’d put my effects in order,  contacted childhood friends, found peace with enemies and accepted the losses of friends.  It was where I’d realised the value of time with family and friends and where I’d found a peace with myself in the knowledge they’d be happy with the memories they had of me. 

I’d always hoped to walk out strong... stronger.  I hadn’t.  A year ago I’d been helped into a car and stayed strong on the twenty minute ride home where I'd used my walking stick to get to a bed and sleep. 

Today, I walked out healthy and looked back at the building I’d called home for so long.  My tears were not those of joy nor those of sadness. I cried at the knowledge I was walking away from something many people don’t.  A place my parents must have been so familiar with, distraught at the statistical possibilities, but that I’d been evolutionarily oblivious to.  I was walking away from a place I loved but was so nearly the last place I knew. 

So goodbye deathbed,  I’ll see you one day, but not just yet. And until I do, I shall celebrate the moments I have left. Of course, the traditions of birthdays, and Christmas and all the usual shite that now means something more than it ever did. But I’ll celebrate every other moment too: the birds and the leaves on the trees, the smile on my daughters' sleeping faces, the smell of a pizza that’s nearly cooked and the feeling of love between family and friends.  

I’ve been given the gift of knowing the true value of stuff in life. It’s not alcohol or wifi or the shit on your phone;  It’s you.  And it’s me. And us. And the smell of cut grass on Basford Cricket ground.  And love. And friends. And tomorrow.   And I’ll be there to see it with you. 

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6 months All Clear

Yep. That's me.... Six month's All Clear. 
The trio of tests gave me the All Clear again (apparently, the most useful one is the consultant asking how I am (..."ok thanks.", "Great, you're all clear", "Ok")

Dr Bishton reminded me that we're half way through the first year of All Clear-ness at which point, the likelihood of it returning diminishes vastly. Also, that if I said I wasn't so good then he'd be concerned but if, in four years time, I said I wasn't very good, then he'd just tell me to go away since I'd be just like a 'normal' person.  So I'm pleased with today....

... to put it rather mildly. :)

Merry Christmas

I'm at the age where I tend to play down birthdays and Christmases and since my All Clear in October I've had (objectively) quiet ones, but actually a part of me is marking these events with that release of adrenaline one gets in the upper abdomen sometimes. I see that these were events that, possibly (25% chance), I may not have seen. So, I may not be out clubbing for Christmas but I'm internally, quietly, but exhilaratingly, celebrating. Not just Christmas (whatever that means), but being here, with my family and friends and trees and everything else in life.  

Totally feeling very John Denver. https://www.youtube.com/watch?v=k9Gh6dn7hzQ

Ankh

My PICC line was an extension of my inner upper left arm from February to July and became a symbol of my cancer and its treatment. I wasn't allowed to have any physical intervention (the dental hygenist turned me away) for at least three, and ideally six months after my last chemo. So to mark my 3 month All Clear and not having cancer in general, I took my children to see me mark the place my PICC line had been with my first and only tattoo. It is based on the Egyptian hieroglyph, "Ankh", meaning life. I've tweaked it to make it curlier, longer and to embrace the PICC line mark

'Embrace Life' tattoo commemorating the mark left by my chemo. You can't see the dot from the PICC because of the camera flash but its still there in the uppermost loop.

3 Months All Clear

I'm not convinced by the tests; 1 - a blood test, 2 - "How are you?" and 3 - a feel of me, but that's how it's done and since they say I'm still all clear,  I'm 'avin' that. Yayyyy!

ALL CLEAR

 Well. It's taken some time coming but at least it came... I got the 'all clear' today. I officially no longer have any lymphoma. :)

Me with my certificate, my mum and some of the nurses.

Any ideas for presents for the wonderful nurses who saved my life would be appreciated. (A box of chocolates doesn't seem to do it justice really!)

No News is Good News

Hi. well. Again, no posts for a while here but that’s because not a lot has happened recently. I had another pent neb and weekly dressing changes and frequent blood tests but nothing new particularly. I’m taking all of this as a good sign. Since the ‘bonus biopsy’ two weeks ago, I haven’t heard anything and (surely!) they’d have got on to me if it had come back as showing cancer. they’d said that if it was then they’d be giving me radiation treatment and they haven’t said anything. I'll find out for sure on Wednesday when I have a results meeting. This time they only have to do 1% as they’d given me 99% all clear at the last one. So I'll let you know. In the meantime, I'm still in limbo.

Bonus Biopsy

Further to Wednesday's inconclusive result and really very small white marks on the PET scan, I was invited to visit QMC hospital (everything else has been at city Hospital so this was a change of scene) for an ultrasound view of the inside of my neck. This was to provide a more detailed look to try to identify whether the areas that showed up white on the PET were lymphoma or just a wonky thyroid (my words, not the doctor’s). The sonologist said it probably wasn't anything he’d normally worry about but given my recent medical history, he wanted to be sure by doing a biopsy. This was three ‘injections’ where he took parts of the lump out to send off and study. If you’ve ever tried to ‘just relax’ when someone pushes a needle into your neck, you’ll know that it’s not an easy thing to do. I have a bit of bruising now but hopefully the bit of missing neck is now in a lab with some scientists finding something conclusive.

Results

Well. I had been hoping to announce that I’m “All Clear!” but I’m actually “Inconclusive but mostly clear!”, which somehow doesn't have the same ring to it. The scan which showed lymphoma as white blotches all over the first scan, now shows just a tiny bit around my thyroids (neck) which was the biggest tumour. Apparently, the scan can produce a false positive when the thyroids are recovering or damaged and doesn’t necessarily mean lymphoma. The doctor said it was definitely 99% but further tests will determine if it requires more treatment or not. I will have an ultrasound scan and a biopsy to look into it further and probably some radiology treatment. Then I'll have a meeting in 3 weeks time similar to today’s which, hopefully will be more conclusive and add the missing 1% to my recovery. I’m happy with 99% but the wind is out of my sails a little!

Results Day

OK. So today is the big day - results day. I slept, but restlessly. Less than 2 hours until I find out if I have cancer or not! Did the 3 months of chemo work? I've crossed my fingers quite a lot over the last few months. Today is the big day. Update to follow.....

Final (hopefully) PET/CT Scan

My pet/CT Scan is to put radiation into sugar then inject it into me. The sugar clusters around areas of cancer and the radiation is read by the machine producing a 3D picture of any cancer in me. The previous scan in march was to determine how much and where the cancer was, the purpose of this scan is in the hope that there isn’t any. The picture is the doctor injecting the radiation into my arm. The yellow box has radioactive sugar into it which takes a few minutes to administer. I then wait an hour for it to reach every part of my body before the scan. I’m then radioactive and can’t be near children under 18 and pregnant women for a further 6 hours. Results in 2 days. Gulp!

"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)

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

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.

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.

Neutrophils

I’m at home  for a few days and, as if I loved blood tests, I thought this would be a rare occasion when I’d get chance to go to the GP and offer a blood test which the Transgender Centre would need to determine my trans medication on the 25^th.  No big deal there, I’d just wait a week, get a letter with lots of technical blood info on to take to the gender clinic as usual.  However, it may take a week for the GP to pass these results on but they’re obviously in communication and the hospital called to say the GP blood test had shown that my neutrophils were very low and I needed to be monitored at hospital. No more being at home for a while.

Hair Loss

My hair has been falling out more and more over the last few days. Every time I run my hands through my hair about 50% of it remains in my fingers. I’ve been growing my hair for what seems like years to look more feminine but I think those days are over now. Rather than feel sad every time I run my fingers through my hair I thought I’d give my kids some fun and borrow my neighbours hair clippers and let them shear me. So I now have a new look - Bald or headscarf. There is apparently a wig voucher which I think may end up being a longer term look but for now I’m bald.

Sick Leave

My four week sick leave just ended and the doctor took no time at all in immediately signing me off for a further 4 months!

Greetings from the Space Station

After Skyping my neighbours we decided that it looked rather like I was in a space pod and would be fun to tell their young boy that I was in space rather than hospital.  Aided by the poor wifi connection, the images beamed back from Nottingham city hospital convinced even me.

R-IVAC in Toghill Ward

IVAC Chemo, Toghill.

I’m in hospital again with a drip for a week. There are various bags of chemicals which take between 15 minutes and 24 hours to be pumped into me through a drip and pump into my PICC line. There are 2 lines so they can pump 2 chemicals at once if necessary. They take blood out daily to check it for various things. They also flush the line in between each procedure.

Toghill is great and has a good reputation, there are individual rooms with en-suite bathrooms and lovely staff. There are 3 small meals a day and televisions that don’t work. They do have free wifi though which is very slow but way better than nothing given that the drip means I cant even leave the room for a week. My sister gave me her Amazon Prime details so I can watch box sets on my laptop (which I bought specifically for my sanity in hospital).

IVAC chemo

After a few days of relaxing at home (I’d been signed off work for 4 weeks) I had a meeting with the consultant to discuss when and what the next chemo would be. It would be IVAC chemo and start on Monday for a week in Toghill Ward at City hospital.

The consultants had looked again at the pet scan and the number of locations of lymphoma and decided that the whole thing added up is bigger than they initially thought.

They are changing the treatment from the R-CHOP which I just had to something stronger after finding worrying extra bits of lymphoma. The size, location and biochemistry of them are notable and deposits have been found on my heart, kidneys, vertebrae at the back of neck, the muscle on the back of the abdomen, pancreas, bowel etc etc! All of these are small deposits but signal a more aggressive lymphoma.

The main difference of this is that there is a greater risk of relapse later and of nervous system compromise. To reduce these new potential problems Dr Bishton and Dr Martinez-Calle have decided to change my chemo from R-CHOP to a combination of R-COCDOX-M and R-IVAC. 

It will now take place at 3-4 week cycles alternating from IVAC to CODOX-m twice each and I'll have to be an inpatient, staying in hospital for about 4 days after chemo. The programme will be about the same total length but more intense and I'll be staying in a ward.

Although there is less than 5% chance of nervous system compromise, it would be complicated if it is so they’re going to blast it with the new chemo.

R-IVAC  will be 4-5 days in hospital including the actual chemo and an antidote drug to flush the system. The blood must be clear of the drug before they’ll let me home. This will be repeated every 3-4 weeks.

These treatments will almost definitely make me neutropenic (have a low white blood count) which makes me extremely vulnerable to infection. If I get a temperature, I need antibiotics very quickly and go straight into hospital if I've been allowed home.

The timescale and prognosis are the same (ish) but the journey to get there may be tougher.

PICC line and R-CHOP Chemotherapy

In advance of the chemo, they need to put a PICC line in my arm. They say the way to a man's heart is through his stomach. It turns out, its actually through the cephalic vein in the arm. The PICC line is similar to a cannula which is like a usb port to which they can attach any drip into a vein and put stuff in or take blood out. It differs from a cannula which would normally go in the back of your hand in that it goes on the inside of your bicep and is a tube fed up the vein inside the shoulder to near the heart where any drugs will go very quickly round the body. The doctor guides the tube up the vein using ultrasound which sees everything except nerve clusters which she apologised in advance if she hit one. Blimey that hurt! And in a completely different place to where the line was. The PICC line is quite a permanent thing and can be kept in for 12 months. Its very useful and avoids a multitude of jabs.

My dad took over from my mum as I went in to the chemotherapy room. A room of about 12 comfy lazyboy chairs with drips going into unwell people.  I was to join them as an outpatient for about 6 hours where I played chess with my dad and dozed and sat.  There was a young gentleman and his wife opposite me having the same treatment and at one point his wife noticed the drip bag was leaking and some of the chemo drug was in a small puddle on the floor. The duty nurse moved him then put on goggles, facemask, gloves, overshoes and a white SOCO overall to attend to the puddle. What the hell is this stuff they’re pumping into my veins that they need such protection from?!!! 

At the end I was given a bag of tablets including syringes and a timetable of when to take the tablets each day which totalled about 11 a day and injections along with added complications of some tablets to be taken with meals, some without eating, some not with other pills, some on day 3 to 7, some on Mondays and Thursdays etc. My mother and I drew up a calendar of what to take when.  Something was keeping me awake, I think it was the Philastrim injections.