Good News – March 2019

Following my miserable January I return to hospital to retry a scan with far more success. This time I am straight into AOS for a canular which goes in with no trouble. I am then directed to the MRI scanners within the hospital rather than on the trucks outside. This bodes far better. The staff are definitely proper NHS staff rather than contractors and, double bonus, it’s not freezing cold so I won’t get chilled to death during the process. The scan goes ahead with no problems, the contrast fluid is injected and I leave feeling a little more positive.

For the next few weeks I gradually start to feel better, with more energy. I return to Citizen’s Advice to do some advising. This feels like a major step forward. I manage only a morning session and see only one client but the pleasure I gain from getting back to normality is a huge boost. Once home I sleep for a good three hours, the mental stimulation takes a toll but that still feels like major progress. In the next weeks I usually make it in one morning a week and see some clients. The skills of interviewing seem to still be there and I enjoy feeling I am contributing something back to the community again. I am also fortunate that the February weather is unusually mild so most days I get out for a walk and as time goes by I find I’m going a bit further each time. Some days I don’t have to have a sleep but if I try to do too much too quickly there is a payback.

The return to normality is gradual but definite. I am told it has been long enough since my last dose of chemo that I can get my roots dyed. Not apropos of nothing, none of the medics are in the habit of drawing attention to aspects of my personal grooming but I had asked the question because I was a bit sick of what a mess I looked. Plus I fancied a couple of hours in the hairdressers catching up on the latest round of “celebrities” in their stash of magazines. And to add to the fun, we receive an offer on our house which had been on the market previously but removed as the chemo bit. We in turn see a house which we like and make an offer and suddenly my life goes from a succession of hospital trips and lying on a sofa to filling in forms, sorting through crap and talking to solicitors/mortgage brokers etc. At this rate I’m never going to finish Friends….

Our appointment with Dr P to get the results of the scan is booked on our wedding anniversary. And while I’m not sure if this is good or bad, at least we will be having a trip out together to mark the occasion, which is not always (usually) the case! But we find it hard to be chatty on the trip to the hospital. These journeys are always a challenge. The appointment is for 10.30 but Dr P. can be relied upon to be running late. Ten minute slots aren’t really enough to be giving people potentially devastating news. When we are called in Dr. P. looks really tired, she has dark circles under her eyes and seems subdued. This is really unusual, she is normally radiating an energy force, she is tiny and slight but fizzing with vitality. I immediately fear she is about to deliver some bad news.

How thankful I am to have my worst fears proved wrong. Their hope was that the PCV chemo would manage to keep the “area of enhancement” which is the disease, stable for as long as possible, hopefully a very long time. However it has proved sensitive to the chemo and has actually reduced. They will now just keep an eye on it with four monthly scans but for now, no more treatment is required. This is amazing news, the best we could have hoped for. All the grimness and vomiting have been worthwhile. It seems I am yet again one of the lucky ones.

Not the Best of Weeks – Jan 2019

All too quickly the time comes for me to start round 5. I sort of don’t want to go through it and I’m not sure why. But I brace myself and remind myself that I’m counting on it to help me shift another half stone. I’ve been a bit remiss and forgot to book into the surgery to have my bloods done in advance of the tele conference to let me know if we’re good to go. While my surgery are normally very accommodating they simply can’t squeeze me in but I can get them done at a walk-in service at the hospital so David takes me there. Trip one of the week.

The next day I have the telecon and they say unfortunately my bloods have been lost and can I come in two hours earlier on Monday, the treatment day so they can take some more. This is a bit irritating to be honest. They’ve never got lost on previous occasions when they’ve had to travel ten miles from Loddon to Norwich but when I have them done down the corridor, they do? Ah well, I can kill a couple of hours – luckily a friend is dropping me and David is picking me up so at least no one else will have to sit around.

Monday comes and my friend Sue drops me at the Colney Centre. A nurse, Joy takes my blood. She asks if I mind waiting out in the waiting room while they test it and they’ll call me in at 4 for my treatment. Previously when they’ve tested my blood at the Colney, they just run it through a machine and get the results in minutes so I wonder why they have got me in so early but there’s nothing to be done so I wait. Just after 4pm I am called back in and nurse Joy tells me everything is fine, she’s just going to prepare my drugs. She says my bloods are fine, there was a question mark over my kidney function but its all ok. Well this is unwelcome but actually good news. I’m on!

Except there seems to be a problem, Nurse Joy is very apologetic but for some inexplicable reason, they are out of Lomoustine, one of the three drugs that make up my chemotherapy. She is very sorry but can I return tomorrow? The pharmacist is certain she can get them for tomorrow. I suggest I get the intravenous part to be going on with as the Lomoustine is just pills but Joy thinks I need them in the combo. I see an opportunity and seize it, “maybe I should defer a week, come back next week?”. But I am assured there is no need. The drugs will definitely be there tomorrow and we can proceed as planned. Trip two ends with me celebrating an extra evening of feeling relatively well.

The next day, Tuesday, I go back for the promised treatment. Now is when things take a turn for the surreal. I am told there is no way I can have my treatment. My platelets are too low and on a downward trajectory. They will have to defer me a week. The doctor overseeing treatment comes to speak to me as, despite myself, the tears have started again. I’m just so confused and I’ve revved myself up, braced for treatment, I don’t understand what’s happening. “Nurse Joy said everything was fine!” I explained to him. “The drugs were missing or she’d have given me the treatment yesterday!” The doctor is patient and kind and tells me that my reaction is quite natural. He is sorry about the mix up but they simply cannot proceed with the treatment, it would be too dangerous. He tells me it could be catastrophic. Which leads me to wonder what would have happened if nurse Joy had had the drugs available yesterday? He says they will look into why there was such a mix up. I don’t feel entirely satisfied, I don’t have to understand every part of the process I am undergoing but I need to feel secure that the people administering it do. I ask him what the benefit to me is in continuing the treatment versus stopping at this stage, after all I was originally told they would be delighted if I made four. He tells me he is not a brain specialist but he will ask Dr. P. to contact me.

My misery that week was not confined to the treatment rooms. Come Friday and I was back to hospital again to have an MRI scan. This time my friend Sally brought me and we arrived early so I could have a canular inserted in the Colney. We checked in and waited. I asked how long it would be and was told just a few more minutes but as time ticked away I got more anxious. I explained I was worried they would think I hadn’t turned up so the receptionist tried to call through to let them know but inevitably, they were engaged. Finally, Sally and I were told to go to the Acute ward to have the canular put in and we were back on track.

Of course, when we got the MRI department I was told they had me down as a no show. It seems the Colney receptionist had not been able to get through. I explained so they agreed to fit me in and after a wait of 45 minutes I went into my scan. But things were just not destined to work out for me that day, after they’d done the first set of scans, they tried to put in the contrast through my canular, “Can you feel a stinging in your arm?” I was asked and indeed I could. “The canular has failed” he said. I don’t know if he would have been able to get a new canular in to me but I didn’t feel inclined to give it a go, even had he shown any enthusiasm to do so. I was in the scanning trucks outside, I think these MRI staff have been contracted out as they don’t wear hospital uniforms but all wear matching sweaters. While this may not mean they aren’t super with a needle, they don’t inspire huge confidence. No we ended there without a full MRI scan achieved thus an entire waste of everyone’s time.

On Monday I returned to hospital to have more bloods taken and to wait another two hours to see if treatment would be given. It came as no surprise to be told my platelets were still not up and treatment would not be given. I hadn’t been called by Dr. P. but an appointment had been made for that week and I would go to that to discover whether we were going to be pursuing any more chemo or not. My fifth trip in eight days left me absolutely at the end of my desire to spend a moment longer in the hospital grounds. I felt spent, exhausted suffering from a massive sense of humour failure and struggling to see any point in the whole sorry business.

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.

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…

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.

Round Two – Sep 2018

By the end of my “break” I am feeling basically back to normal.  The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever.  Then before I know it, Posy has her birthday and I am due back at hospital for round two.  No tears for me this time, not now I know the drill.  I fair skip into the Colney Centre, ready for my spot in  a comfy chair and a nice cup of tea from a McMillan volunteer.  During the week I had a blood test done at my local surgery.  As ever they  found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies!  They need to check the white count but they have a machine on site to do this.

My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns.  She is very sorry but they can’t proceed with my treatment.  This news comes as an absolute shock to me, this is not something I thought would happen.  It seems my white count is too low.  It has to be over 1 and mine is languishing at 0.24.  But I feel fine!  What has gone wrong?  What have I been doing wrong?  I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough?  “it’s just the treatment” the nurse keeps repeating.  I don’t understand and I feel unaccountably upset.  The nurse tells me they’ll defer me a week and my count will come back up.  I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing.  But I calculate the next week will still be ok and I defer for the week and return home.

The following week David and I arrive at hospital again.  We resume our spot in the comfy chair.  Again I feel fine, as fine could be so all should be well.  My blood is taken through my trusty Portacath.  I’m getting more used to the sensation now.  It’s not without pain but in skilled hands it’s very momentary.  Again we wait and the nurse returns having checked my bloods.  It’s not good news; my white count is up but only to 0.46, still not high enough for the treatment.  The nurse explains we’ll defer another week and that she’ll speak to Dr Pinelopi, my consultant.  She’ll review things, possibly review my dose and we’ll see her next week for a discussion.  I feel I have failed, totally and utterly failed.  David and I return home, dejected.  I resume research on how to improve my white count.  We realise through this research that I am effectively neutropenic and should therefore be taking certain precautions.  These include for example, washing the spinach etc. that I am shoving down in my morning smoothies.  Ooops. However, these precautions are all about staying free of bugs as your system has no immunity to fight infection, they won’t actually bring the white count up.  Further searching turns up zinc and almonds.  I add in a handful of almonds and a zinc and vitamin C tablet to my daily regime.

Also, and this cheers me up beyond measure, I make contact with Hannah, who will be my new specialist nurse.  While Tracey has been lovely over the phone, we’ve never met in person as she doesn’t work on a Friday, when my treatments happen and we’ve had fairly limited contact.  Hannah, however,  will be there for my treatment and I feel comforted that this may help me to sort out some of the confusions and anxieties I am feeling, if I have a face and a person I can perhaps know and just maybe get to trust.