Trip Cut Short – Mar 2003

David had some time off work and Sue and Din had invited us to join them over Easter, in Wales. This seemed a good opportunity to get away and catch up with friends on the way. Our trip started with friends, Dionne and Mike in Sussex. We had a lovely day but unexpectedly by the end of the day I had to lie down as I had developed a really bad headache. We didn’t think anything of it and the following day I felt fine again so we continued on our way.

Next stop was Haslemere to visit Italo and Rachel. The weather was glorious, really bright sunshine and actual warmth from it. We spent a day at a childrens’ play park/mini zoo and everyone had a lovely time. But that evening I developed a crushing headache, as our hosts prepared supper. This one was worse than before, I was starting to be sick. We diagnosed me with a migraine from the unexpected sun all day. I should have worn a hat we all agreed.

It was during this evening that events took an even worse turn. David kind of flipped out. My memory of the night is still hazy because I was so out of it with the pain of the headache but I dimly recall him going a little bit crazy at me, wanting to know why I was doing this and ruining everything. And then he was just sobbing. Not like David at all, he was like a man possessed. This was the night we all realised the toll everything was taking on David, effectively he was breaking down with the stress of it all. I assume Italo and Rachel calmed him down. I could do nothing except go back to sleep. The next morning I again felt better. David called Italo’s brother, who is a G.P. We agreed we could not continue to Wales with me (and David) so unstable. So we contacted Addenbrookes and arrange to go in for a check, cancelled the Welsh leg of the trip and spent the day relaxing in the garden.

When we went to Addenbrookes we were seen by a registrar on Dr Jeffries team. I think I described my symptoms. He listened and nodded and told me not to worry. “There’s a lot of gastroenteritis about”, he explained. His brother-in-law had been hit with it quite badly. This was a relief, well not his brother-in-law particularly but the news it was probably a bug. He said he would see me again when I started my radiotherapy, in another couple of weeks and we left quite reassured. David, the kids and I next headed to stay with our parents. In the bosom of our families, I had no more nasty turns so we felt the bug theory must be right. We hunkered down ready to meet whatever challenges radiotherapy would bring.

One of our major concerns about the Radiotherapy was the logistics. Addenbrookes wanted me to have it done with them as they had very up to date machines there that would target my tumour more accurately and cause less damage to the surrounding tissue. While this was a good thing, the nature of the radiotherapy I was having meant the treatment was every day for 6 weeks. Each session would last only a few minutes, if that but I would have to get to hospital for it. As a non-driver this was going to be a slight challenge. Fortunately a new train line had just opened up which was direct from Norwich to Cambridge which was a help. It looked like David would get me to Norwich station. I’d take the train for an hour and a quarter then get a bus to the hospital. Around about a two hour trip, or four hour round trip daily for about two minutes of treatment a time. We were all concerned about how this would go, especially as the main side effect of radiotherapy is fatigue.

Never mind. The first thing to be done was to get my mask made. This was undeniably a slightly freaky process and I was once again grateful for my meditation techniques. Essentially, to create a mould for your head, you head has to be covered in some stuff and allowed to set. They were brilliant at this procedure, talked me through it the whole way and I didn’t get panicked. But I was glad I only had to do it once.

We had been talking to my health insurance providers to see if they could offer any help with transport to the hospital. They couldn’t/wouldn’t however they did offer an alternative solution. They would cover the cost of my staying in a Nuffield hospital near Addenbrookes any nights I wanted to during my treatment. Looking at the cost of this versus them paying for me to get a taxi there and back each time, it doesn’t really add up to me. But that was all they offered and as it meant if I wanted to stay over a couple of times in the week to break up the travel then I was grateful for it. Once again I felt grateful at the position I was in of getting this help, through pure luck at being employed by a company who had good benefits. I wonder how others manage and what detriment it has on their prospects of recovery. I just had to get my head down and get on with it. I didn’t like the idea of being away from David, Ned and Posy too much but overall I had to think of the future and ensure I got the maximum out of the treatment. Thank God for Debbie who had agreed to go to 5 days a week from 4. And things were about to take another turn for the different in our lives too.


Getting on with chemo – Dec 2018

Round four loomed and I was keen to get on with it in order to have time to recover and get organised for Christmas. In the event I was deferred for a week. Not because of my white count which has been holding up fine with the trusty injections I do. No this time its the platelets. And nothing can be done about them other than to wait. If they get really low they will do a blood transfusion but mine are not that low. Just too low for the next round of zapping. It’s frustrating because I really want to have time to recover enough to get through Christmas with some degree of enjoyment. Now I need to start panic buying to ensure I’ve got everything sorted before I get zapped because the timings will be tight.

As with previous rounds I experienced 4-5 days of vomiting, followed by a week or so of nausea and gradually it wore off to be just the trusty tiredness. It is rather like child birth in that once the worst is past you sort of forget how nasty it feels for the week or so. And I’m feeling lucky so far. I am reluctant to commit this to print lest it prove to be the kiss of death, much like uttering the dreaded words, “the M25’s running smoothly today!” only to hit a five mile tailback round the next bend, but so far I would say I’ve got off fairly lightly on the side effects. The main worry they have is infections, because the immune system becomes so compromised. I have only had one infection to date, after round two. It was rather uneventful. I was feeling pretty dodgy one evening, but barely more so than I often now feel. My temperature, which I’m supposed to take daily but never remember to was a little high but not glamorously so. I took some paracetamol and resumed moaning. After a while I checked again and my temperature was stubbornly remaining above the 37.5 at which point I am supposed to call the acute Oncology help line. It was getting late and I was tired and didn’t want to bother, I just wanted to go to bed but David insisted I call and the Oncology team insisted I go in to be checked over.

Brilliant, it was getting on for 11pm and we had to schlep out to the hospital. I was convinced our thermometer was dodgy. We had invested in a digital ear thermometer when I was told I’d have to keep a close eye on my temperature the previous year. We’d managed all these years before, through the child raising days on a strip thermometer which basically didn’t budge from the orange reading which seemed to be a temperature so low, you’d barely ever been alive, through to the high green which was enough to get the kids a day off school but seemed to me to be within the normal human range. I believe if it went higher, that meant a genuine fever but in 19 years we never saw that happen. Which I suppose is good thing really but did cast a bit of doubt on its efficacy.

When we reached the hospital it was all pretty dark, not unreasonable for nearly midnight but we couldn’t find a way in as the instructions we’d been given led us to a very locked door. Eventually we found a way in and by this time I was desperate to go to bed. I assumed they check my temperature and send me home but in fact their hopefully properly working, NHS supplied thermometer was in total agreement with our dodgy one and my temperature was indeed too high. This meant I’d have to stay at least for the night and be given antibiotics. I’d already made myself comfy in the bed ready to nod off for the night but you can’t get away without a fair bit of prodding and poking and of course, they needed to get a canular in me! But I felt safe and cared for so I shouldn’t grumble.

By the next day I was feeling much better already and was thinking I may be let out. But it transpired I’d need to be on the anti-biotics for a while yet and they’d be keeping me in for another night. I settled in and prepared for the stay, I do like the hospital beds with the adjustable heads and legs. Hours of fun can be had contorting yourself until you get to the perfect position, at which point inevitably someone comes with a cup of tea and you have to get back to sitting. Ideally it would have a memory button like I gather some people’s cars do to ping you back to your favourite place but I can see the funding for enough staff should probably be a priority.

During my previous stay at the N&N I had had some grievances with the food so I wasn’t overly hopeful on that front. But to my surprise, lunch, when it came, was a rather pleasant sausages with mash, veg and gravy. I’d just tucked into one sausage when a nurse arrived to give me my anti-biotics. Rather than using the drip she said she’d simply inject them which she duly did. And literally, as the antibiotics started to go in, so my lunch started to spew out. I did my best to catch this not even partly digested lunch in my napkin as the nurse scrabbled for a cardboard bowl. I actually think I did pretty well in the circumstances though not well enough as my bedding had to be changed. I did feel a pang of regret as my second sausage was whisked away, along with the chocolate mousse dessert. I wondered if it would wrong of me to ask them to leave it but decided it was probably best not to. As is so often the case my appetite, despite the sudden, violent eruption remained undiminished but I didn’t want to take the piss. Following this incident, my antibiotics were all administered slowly, via the drip.

Other than that brief flirtation with infection I have remained, thankfully, mostly side-effect free. I have a terrible fear of getting mouth ulcers. I don’t know why but idea is particularly grim to me. I dislike the nausea and I’m not that keen on throwing up, though I am pretty good at it – see incident above! But I am surprised when, during the Christmas period, I develop a new and unexpected problem. I start to feel dizzy. Not the fun, whoops I may have had a tad too much prosecco type dizzy, but a more disorientating sensation where I have to hold on to something when I stand up I don’t like it and though I can cope with it it’s very restrictive. I have another blood test but that all seems fine. Some days seem a little better but broadly it doesn’t seem to be going away. So I make the mistake of trawling through the details of my various chemo drugs for any possible answers.

Pandoras box, how I loved that story when I was growing up. But it’s what I fear I’ve opened when I come to the rare but listed side effect of nerve damage. Basically I am shitting myself. I call my specialist nurse for help. Unfortunately she’s not there, away sick. Her colleague, who is at pains to say she is not a brain specialist, can’t give me much information. I ask her whether it will wear off as the chemo wears off? She hesitates and explains not all side-effects are time limited. Wtf! I ask her if she can ask Dr P? She says she’s away or she would. I can’t describe what I felt. Most things are pretty easy to bear if they are, to use the nurse’s phrase, time limited. Otherwise, not so much. The nurse had suggested I get my blood pressure and my ears checked so I make an appointment to see a nurse at the GP surgery.

To my surprise, as I wait to get called by the nurse, Dr D. appears. It seems he is taking the appointment and he checks me thoroughly, blood pressure sitting and standing, ears, discussion of symptoms etc. As ever he is a reassuring presence. He explains that if it were nerve damage it would be unlikely to feel better at some times. My bloods were a bit low but have been recovering. Dr D. thinks it more likely to be an ear infection. If symptoms continue I have some exercises to help. I am incredibly relieved to hear this. And, as is so often the way, over the next couple of days, the dizziness recedes and I start to feel fine again, ready for the fifth round.

Happier days – March 2003

There was a gap while we waited for my radiotherapy to get underway and we determined to use the time well. First up on our agenda was to get married. This had a practical element to it, we wanted to ensure David would not encounter any problems should I die. Although he had registered as Ned’s father, at the time of Ned’s birth, we were advised that if we were to get married we’d need to fill in some additional forms to give him proper legal paternal rights. This had all changed by the time Posy was born but we were a bit twitchy about it and wanted to be certain.

There was an additional, more romantic reason too! We’d been planning to get married for ages, since David had proposed on Millenium Eve. That had been a shock, to this day I have no idea whether he had been overcome by booze and bonhomie or whether it was at all planned. We’d been together, broadly, for seven years so it was hardly a snap decision. Anyway, no sooner had we started to make plans and look at venues, I started to be sick and nauseous which turned out not to be nerves or anxiety at this new turn but my body’s reaction to being pregnant with Ned. I wanted to enjoy any wedding party so we decided to delay until after his arrival. But then when he arrived I was so enraptured I thought I’d want have another baby quickly and so not long after, along came Posy.

After Posy arrived we made plans quite rapidly. We had the idea of getting married at Earlham Hall, the law school where David worked, a rather lovely building, surrounded by Earlham Park. We were given permission to use the Hall but had to apply to the Council to be allowed to have a marquee on the lands outside. David, meanwhile, had booked a slot at Norwich registry office for us to be married on the date, 10 years to the day that we had gone on our first date. What an old romantic, you may think! No, he didn’t want to have to remember a new anniversary date. Well, that’s his story anyway…. The idea was we wouldn’t tell anyone then have a full celebration at a summer do, such excitement! Ah, the best laid plans. The day we received notification from the council that we could indeed have permission for the marquee, was the day I collapsed with my first fit.

So the big exciting party plans had been put on hold but the actual legalities seemed wise to get on to. We asked Debbie and my sister to be witnesses, we were aiming to keep everything as low key as possible and had not really told anyone else, not even our parents. My sister could make it but was literally heading to Australia the following day so would have to bring her two teenage children, which was fine. Otherwise this was planned as an entirely fuss free event. In the end, my sister convinced me to buy a new skirt and top and I cracked and ordered a bouquet and buttonholes. Catherine and her kids, wore jeans. It was a curious little group that turned up at the registry office.

Norwich registry office is a rather beautiful building with a rather vaulted, incredibly echoey waiting area. I remember this in particular because on arrival, Posy decided to wake up and start screaming at the top of her lungs. I’ve no idea why, Posy was normally an incredible peaceful, sleepy baby, most content when left to slumber. Perhaps she felt the need to make a comment on the impending nuptials in her own inimitable style. My nephew, Theo had volunteered to film the little ceremony and amused himself by practising on this noisy tableaux while we waited and tried to pacify Posy.

And then as we were all flustered and flapping, our turn came and Posy magically went quiet. Then the little service started and David and I decided to take up where Posy had left off. I’m not quite sure how we got through it. I have a vague recollection of the registrar, in slightly kinder terms, telling us to pull ourselves together. But it was like a released tidal wave. I get emotional at weddings at the best of times but as words like, “in sickness and health” suddenly had such resonance, David and I were in pieces. I don’t know how the others were but the two of us sobbed our way through it. We got there but it wasn’t pretty.

Afterwards, we had some photos and then went for lunch at a pub. Theo, who had been assiduously trying to capture some of these sorry carry ons was playing around with the video camera when he realised he’d accidentally ersased all the footage. To be honest it was probably just as well.

Better News – Oct 2018

Between round two and three I have a scan.  I’m very used to head MRI scans.  I imagine I’ve had at least twenty in my life and I’m pretty good at relaxing through them.  But the last couple proved more problematic.  When they do an MRI, they do an initial set of pictures, usually lasting about half an hour, then you come out, but keeping your head completely still they inject the contrast fluid in via a canular.  This is vital because it highlights any cancer cells and gives a much clearer picture on the resulting scans. 

The problem is that for my last two scans I had an adverse reaction as soon as the contrast went in.  The first time I felt nauseous, the next I full on barfed, though held it in long enough to go in the cardboard hat, I’m not a total animal!  I had discussed this problem with Dr. P. who agreed I was developing a sensitivity to the chemical but she had prescribed steroids to be taken, I assume to counteract the reaction.  The second problem is the difficulty of me and canular insertion.  My boring fine, deep veins have resisted the best efforts of many a medical punt.  I have been through countless occasions of having one staff after another having their couple of “sharp scratch” attempts before seeking someone ‘more experienced’ to have a bash.  This is exacerbated in your average scan situation by a) the fact you’re lying down and b) its usually freezing cold in the MRI room.  And while I usually try gamely to play along, after all, they’ve got to practise on someone, in these scan situations I find myself getting more distressed, despite my best efforts.  I think because the stakes seem so high.  This scan is going to give me an idea of whether or not the chemo is doing what we hope.  Although I have a Portacath to get around this problem, unfortunately the radiology team are not trained to use a port so canular is the only way.

 But this time I was forearmed.  I had discussed the problem with Hannah, who, God love her, had arranged for me to come into the Colney Centre and they would pop a canular in for me. No offence, scan kids but the Oncology team can just do this stuff better! Well, it still took two people two failed attempts before the Granddaddy of canular input did it but they were really nice about it…  The trouble, I think, from my vaulted position of never having had to do it to another person myself, is that you really have to just go for it.  It is inevitable that the victim will wince but you have to be bold and keep on shoving that needle in.  Easy for me to say, I can’t even get a pill into the dog, and she’s a Labrador, they’re supposed to eat anything.  Canular inserted I have my scan and there is no reaction to the contrast so the steroids did their trick.  Only a few days to wait to find out the result.

We are meeting Dr. P. before I have round three.  There are no delays, it seems the reduction in dose and the injections to boost white cell production have had the desired effect and I can be zapped that day.  I realised before the meeting that I’ve never actually asked the question, “What are we hoping to achieve with the chemo?”  I think this has been sub-consciously deliberate.  Back in 2003 when I was battling so hard, chemo was very much the last-ditch saloon and then I’d swerved it, inevitably my expectations of what it can do are pretty low. But the conversation now has to be had. As we’d guessed, the aim of the chemo is to keep the tumour stable for as long as is possible.  But there is good news!  The scan shows the tumour has reduced.  It seems my tumour is as sensitive to the chemo as my stomach is.  This is definitely news to help me get through the next rounds. 

 This is just as well because it seems the cumulative effects are having a greater impact.  This round makes me even sicker, despite the earlier start on anti-sickness medication and the addition of a new powerful drug.  I am sicker than ever.  I can’t stop being sick and we are worried about the fact that I can’t possibly take my chemo pill.  David has to get an on-call doctor out.  This lovely lady travels out to me, a journey of over an hour, on a pouring wet, dark night. She gives me an injection, reassures David that I can take the chemo in the morning and heads back on her long journey. There had been a nearer doctor, in Norwich, but he couldn’t get out to me for a couple more hours and she hadn’t wanted me left that long.  Once again, I am humbled by the kindness of a stranger and her commitment to her vocation. I’m guessing she was Spanish or Portuguese, certainly from Continental Europe, like so many others who have cared for me during my spells in hospital.  Once again, I wonder what will happen after  Brexit and why this country has chosen to send out such an inhospitable message…

Short But Not So Sweet – Feb 2003

For the meeting with Dr Brada I was well prepared.  I was seeing him with my friend, Sue, who had been with me during my initial collapse and she had been far from idle in the interim.  She had undertaken loads of research, so we could really quiz Dr. Brada as far as possible on any possible options available.  The internet was still in its youth but nonetheless Sue had trawled through mountains of pages and we had lined up questions on things that we had come across that we were hopeful might benefit me.  Sue is a solicitor, incredibly articulate and not easily intimidated so I was confident we would find out whatever there was to discover.  

The appointment was at The Royal Marsden, I should point out this was a private appointment; one of the many benefits from my employer was private medical cover.  During this period, it proved invaluable as it meant I could seek further opinions without worry about the cost.  It was also providing me with counselling for which I was very grateful. I fundamentally disapprove of private medical care but I’m afraid my principals had shot out of the window and were rapidly disappearing from view in the light of my current predicament.

So, Sue and I met up in London and trotted off to the Marsden to see what was in store this time. I can’t remember what I was feeling as we headed in.  Inevitably I would have been hopeful of some new exciting news.  I can’t help myself, it’s my nature.  For me, hope springs eternal.  I’m not sure whether this is a bad thing or not.  It does mean I am regularly disappointed I suppose, as my hopes aren’t necessarily met.  But I can’t change the way my head is wired any more than someone with the opposite outlook can.  I have tried to change it.  I’ve tried heading to appointments with a voice of doom playing, almost as an insurance, as though if I’m thinking the worst, the worst can’t happen.  But that is a more recent trick (spoiler alert it makes not a sod of difference to what you will be told, that won’t change whatever head voodoo you try) back in those days I still bounced in expecting the best.

My memory of Dr Brada is of a neat, dapper man, which makes him sound rather like Hercule Poirot.  And he was perfectly charming.  Charming but not inclined to entertain our hopes of an exciting, hitherto unexplored option.   Each question we asked about was adeptly batted away.  Gamma Ray knife? Not suitable for my tumour.  Stereotactic radio surgery?Not for me.  Various other treatments were offered by us, all were dismissed, kindly but firmly.  He had no truck with any of our nutritional plans.  They were very firmly dismissed.  In fact, the entire meeting had the air of dismissing some naughty but well-meaning students.  “Go and have your radiotherapy treatment.”  I was told. “Don’t delay, get on with it”.

And so I did.  Sometime later, when everything was turned upside down I felt quite a strong degree of anger towards Dr. Brada but I think I have finally let that go.  He wasn’t really to blame as he was not a surgical specialist I don’t think; his field was very much radiotherapy methods and on those I assume the information he gave was correct.  And if he did fail to pass on information that might have helped me, I can’t imagine it would have been from malice.  I imagine he may have assumed the neurosurgeons had gone through all surgery options before deciding my tumour was inoperable,so no, my ire is not really directed at him!

I returned to lovely, warm Dr. Jeffries, ready to start the process of radiotherapy.  The treatment would be done at Addenbrookes as their equipment was superior in terms of how well directed it was and would be less likely to cause damage to the surrounding brain.  I would be fitted for a mask and then the treatment itself would be every day for six weeks.  This was potentially difficult given I live nearly two hours travel time from Cambridge, but the train line was just opening between Norwich and Cambridge so we thought we’d be able to manage.  I think Addenbrookes said they’d schedule me in to allow for me to travel there.  The treatment, once there, would only take a matter of minutes.  There was a further small but surprisingly significant blow to be dealt.  The radiotherapy would cause me to lose my hair, some of the loss would be permanent.  I was shocked to discover tears pouring down my face.  Why did I care about a stupid thing like hair loss? I don’t think I’m a terribly vain person, I’m certainly not highly groomed; if I get out of bed, manage to shower, dress and whack a bit of lippy on that’s a good day.  But of course, it’s nothing to do with vanity though I’m not sure I understood that then.  It’s the visible sign to the rest of the world and most importantly to yourself. The visible, inescapable sign that something’s wrong with you.  That however much you may try to pretend that nothing’s changed, that life is still normal, It really isn’t.

Hello constipation! – Oct 2018

Once the worst of the vomiting from this second round subsides I no sooner start to relax when I discover another delight of chemotherapy, one that had been alluded to in the various ‘side effects’ literature but I had not previously had the pleasure to encounter.  Hello constipation!  And who knew how uncomfortable a condition that could be?  I suppose I had got away lightly in the first round as I had been having the marvellous smoothies.  Also, I had taken some Senna tablets, in fact I asked the specialist nurse if it was okay for me to do so and she had replied, “yes, in fact I’d recommend it”, though at no point had done so….  If I sound a bit grumbly at this point, I apologise.  I do understand the huge pressure the NHS is under, I understand the chronic underfunding they are battling against and I know how hard the individual staff are working.  I suppose my gripe is I would have found it very helpful to have a short chat with someone about some of these likely side effects and options to minimise their effects or at least be prepared when they occur?  For the 30 minutes or so the chemo is dripped in a nurse sits with you, perhaps this could be a good time to discuss some of these issues, talk about remedies, warning signs, how to help yourself prevent the worst onslaughts?

In fairness the hospital has a Big C centre that I could be visiting and I’m sure I’d get lots of answers and advice there but I’m only ever at the hospital for my chemo treatment and somehow I’ve not felt up to wandering over there to ask questions that I don’t know I need to ask.  Anyway, in the event, once I am at the stage where the cramp in my stomach has left me so snappy that the family can bear me no longer, David calls our GP, the ever-wonderful Dr Duthie, who immediately prescribes some sachets for David to collect for me and books me in to come in for a visit.

The sachets themselves are for regular aid for mild constipation or in high dosage for the charmingly described “faecal impaction”.  And guess which camp I’m in!  I start the treatment – nothing.  I take the second dose that night – still nothing shifting.  And on the third try….  Hallelujah!  Houston, we have lift off!  The relief, the sweet relief tempered slightly by a minor new problem.  Whereas previously I was desperate to fart in order to release some air, now I am petrified of farting, lest more than air escape me…  But after a settling period I feel so, so much better. 

At the GP appointment we talk through my experiences thus far with Dr Duthie.  He suggests some measures to help alleviate the worst of the side effects.  For the next round, he advises I start to take the anti-sickness pill Ondansetron, a day in advance of the infusion of chemo to help prevent the vomiting from starting.  In addition he will let the District Nurse know that I may need an anti-sickness injection over the weekend, hopefully to avoid any need for me to be driven to Norwich, vomiting into a bowl.  As Ondansetron is itself a notorious constipator, I should have a sachet of the bowel livener a day while I take it.  I feel immensely cheered by this meeting with its actual plan of action.  That feeling of taking back some control, however illusory, for me is the best medicine. 

Back on Track – Sep 2018

On the third Friday I return again. I’m keen and eager to receive it which seems sort of crazy as it’s likely to make me feel pretty grotty.  Perhaps that’s the master plan behind the delays.  Get your patients desperate for the goods…

David has gone away for a long weekend with the kids.  We felt the kids would benefit from a short break abroad during their school holiday, even if I couldn’t go.  While they’d be gone my original plan had been to travel to a friend’s 50th party with my friend, Katie. The chemo delays have made that impossible.  I’m slowly starting to learn that making anything but the most last-minute plans is pretty futile when you’re in this sort of regime.  Instead, my friend Katie is travelling to Norfolk to look after me for the weekend.  She’ll arrive this evening.  Meanwhile my friend Debbie is bringing me in today for treatment and has agreed to take notes as I struggle to remember these medical conversations the moment they are over.

Hannah, my new specialist nurse is here so I have a face to put to the voice, which seems very reassuring.  I’ve sort of lost any real expectation of actually getting the treatment but we go through the motions.  They take my blood from the Portacath and go off to check the results.  When they reappear they have good news.  My white count has leapt up to a positively bouncy 3! I’m good to go but before they start Dr P wants to have a quick chat. 

Dr P arrives with her usual warmth and energy.  She’s sorry about the delays I’ve had.  When she discussed the treatment with me initially and explained the treatment has horrible side effects, this was the side effect they meant.  PCV has a very severe impact on the white blood count.  There is nothing I can do about this, it is what the treatment does and why they rarely expect the treatment to last more than four cycles.  In fact, of around 150 patients Dr P has treated with this chemo, only one has ever made it through all six cycles and he was a young man of twenty. 

This sort of throws up more questions than answers – why do they even bother to talk about six cycles if they know they won’t be tolerated?  Hey ho, at least it’s not me being a useless weakling.  And though the competitive part of me wants to say, “Bring it on!  Sod the white count, if the 20-year-old can take it, so can I!” I’m not unhappy at the prospect of only having to do this four times. 

Dr P is also reducing the dose by 20% and I get a new medical procedure to contend with.  Apparently the blood count drops to its lowest between days five and ten of the cycle so they instruct me in how to inject myself with a drug that with trigger my bone marrow to produce more white cells.  Now I truly feel hardcore and I leave hospital, clutching the sharps bin I have been given with pride.

Katie arrives and we have a lovely time catching up. I am sorely tempted to have some wine with Katie but I know its not a good idea so I resist.  Just as well, a couple of hours later I feel a familiar queasy feeling.  I head off to bed and take a bucket in case.  Within another hour I am being horribly sick.  By the morning I am unable to keep even water down.  If I lie down and don’t move I can keep it under a bit of control but there is a problem – someone is coming to view the house and it’s really too late to put them off.  Katie gallantly steps into the breach and takes care of it.  She does a brilliant job showing them around while they politely ignore the elephant in the room, me on the sofa, green faced with a bucket at my side. (Unsurprisingly they don’t put in an offer).

There is another viewing booked for the afternoon but I cancel it.  I’m still throwing up and I’m supposed to take my tablet chemo today.  I call the emergency Oncology number who tell me to call 111 and organise an anti-sickness injection. I do this and I’m told someone will call me back.  I’m quite surprised when quite rapidly they do.  But they ask if we can get to Norwich for the injection.  Katie heroically agrees and before long she is whisking me up there, me with a bowl to throw up in.  When we get there I am asked if I’m the chemo lady and would I like to wait I want in the ‘clean room’?  I’m a bit confused, I sort of assumed a surgery would all be pretty clean.  But it transpires this is a space separate from all the other patients, mostly young children, presumably some with infectious bugs and I am touched by their thoughtfulness.  I get the injection and am told that if the vomiting doesn’t stop I will have to go into hospital.  As I leave the receptionist thanks me for making it up the clinic which confuses me, I hadn’t realised there was a choice on offer. 

Thankfully, the injection works well enough for me to get the vomiting under control and be able to take my chemo. Katie has to leave early the next morning but has organised a rota of my local friends to babysit me until David and the kids return in the early hours of Monday morning.  For the next 24 hours I mostly sleep but am gratefully aware of the presence of my nursing team, topping up water and fluffing my duvet.  I think the worst of this round is over.