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…

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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.

Not so bad – July 2018

Following the zapping in hospital I am released home to take the next part in tablet form over the next 11 days.  I feel ok, just tired.  I’m also taking a decent anti-sickness which I suppose is helping though today I dropped down to a lower one as there is a risk of constipation with the one I was on.  I feel good enough in fact to decide I will go to see a local play, that a friend is in.  It’s a hot day, really hot and I start to find it a struggle.  Once in the hall, my anxiety rises.  It’s overwhelmingly hot, my friend and I are fanning with our paper programmes but it doesn’t help.  I hope the play will distract me.

As soon as there is a lights out at the end the first scene, I bolt out of the hall and gulp in some air.  A lady appears with a chair for me.  My friend appears soon after and drives me home.  As I get to my drive I puke up some bile.  I guess that was too much, too soon.  It is, also, abnormally hot!  I am still being a bit sick and David calls the oncology centre for advice  They tell me to go back on to the better anti-sickness drugs while I am taking the chemo drugs so that is what I do.  For the next 11 days I pop the pills and dutifully start each day with a health boosting, constipation busting smoothie, packed with raw spinach, fruit and seeds and a bit of yoghurt and juice.  I’d have laughed aloud if you’d told me I’d enjoy anything that looks so repulsive but amazingly I do.  It is refreshing, easy to sip and I’ve no appetite for food.  And this must surely be the most amazing side effect.  I no longer feel queasy, thanks to the anti-emetics, but nor do I want to eat. This is a first for me, I can normally eat under any conditions.  Stressed?  have a snack.  Sad? have a comforting bit of cake.  Happy?  Celebrate with a meal.  There are simply no times when I don’t think a little nibble of something won’t improve things.  Clearly if they could extract the element of these chemo drugs that has this effect, without the poisoning the shit out of your body they’d be making a fortune…  Enough probably to fund research to sort out all our cancer and weight woes!

During the period of taking the chemo I am very tired, I can’t manage without a nap in the day and I’m not getting up to much more than the odd amble out with the dog.  The weather is still really hot and quite humid and seems unlikely to change anytime soon.  I love hot weather normally but this July I yearn for some rain.  Latitude is happening at the weekend.  We’ve got weekend tickets but I have realised I won’t feel up to camping, I’m not one of life’s enthusiastic campers anyway.  But I can bear it at  Latitude as we live near enough that we can bail out should the weather turn really bad. Quite often I just go on day tickets.   This year we had booked tickets  for the whole weekend, the last time our kids would be camping sort of with us and we would be meeting up with friends too.  So I had been looking forward to it, there are some great bands playing, The Killers are headlining the Saturday so I plan to go just for the day on the Saturday.  I can meet my family and friends on site and just enjoy a day of revelry, I can always sleep all the next day.  I can see most of the things I was really hoping to; The Killers, James, Bridget Christie, I can take it easy, not rush around too much.  I can surely manage that.  No, in the event I cannot even make it in for the day.  It’s too hot and I can’t tolerate being in direct heat, the Latitude site is lovely but shade is in pretty short supply.  Despite my enthusiasm, the thought of being out, exposed all day proves too much for me.  It might as well be being held in the Sahara.  Ah well, Ned has a friend without a ticket so I figure it may as well go to him to enjoy, perhaps the karma of giving up the ticket will come in handy!

So I don’t make it to Latitude but with each day I feel increasingly fine.  This is not what I had expected at all.  David and I start to think about what to do with our long summer.  We’ve had to cancel Tanzania on medical advice, all rather gutting but perhaps we can salvage some fun from the holidays.  I call my specialist nurse to say we’re thinking of grabbing a week in Europe I say, would that be okay?  She says no, they wouldn’t want me flying and what if something happened abroad and we had trouble speaking the language?  I feel really dissatisfied by her reasons.  David speaks excellent German and we can get by in French, I’m not being told anything that makes sense to me as to why we can’t go.  Tanzania I could understand but I’ve experience the healthcare service in Europe.  Both my parents died out in Spain and received excellent care.  (They were living in Spain, they didn’t just get unlucky on holidays there!)  I feel mutinous but David is not inclined to discard their advice.  Anyway there are lots of lovely parts of the UK we’ve not seen so we agree to a week in Yorkshire.

 

 

 

 

 

 

Chemo Go Chemo Go Chemo Go… July 2018

The chemo regime begins for me, with the insertion of a Portacath.  A cunning device that will sit below my skin so that intravenous chemo can be piped directly in rather than through a canular which tend to be a problem with me and my tiny deep veins.  The appointment is for 7.30 am which horrifies me as I’m not an early riser but needs must.  David and I arrive about 10 minutes late and I wait, nodding off gently for about 40 mins.  Then they come to do the pre-procedure questionnaire.  They check my name, date of birth then ask me to wait a minute.  They return, apologising profusely.  It seems we were not 10 mins late, rather 24 hours early.  They are too busy to squeeze me in so we agree to return the next day.  I feel, foolishly  I’ve gained a reprieve. To add to this boon, that night England win a penalty shoot out to proceed to the quarter finals – could this be a good sign?

The following day there is no dodging it and we return to the hospital where, despite the early hour the mood is chirpy with chatter of the England win.  I find myself becoming very tearful.  This worsens as I am taken in to the bay,  I have no idea why.  It’s not a difficult, dangerous or painful procedure.  it will last only 30 mins, under local anaesthetic and they are explaining everything to me as it happens.  I try to keep breathing, nice and calmly, deep breaths.  I’ve done this so many times in scans, when the panic starts to rise.  But the tears still come.  This is not about this procedure, this is what it represents and I am overwhelmed by it, overwhelmed by my fear.  Afterwards I wait and they make me a strong sweet tea.  I am shaking uncontrollably but it subsides gradually as the tea kicks in.  I am very relieved to call David to say he can come and get me, I want to go home.  I can’t delay any longer, I’ve avoided it for 15 years but on Friday I will start chemo.

On Friday we head to the Colney Centre, where we’ve been quite often for appointments with Dr. P.  This time though, we won’t be going through the doors to the consulting rooms, today we will go left into the Weybourne Centre, were chemo is administered. When we’re told to take a seat, we grab the two closest to the doors of admittance, like over eager students on the first day of term.  I am weeping, I hope discreetly.  The chap next to David strikes up a conversation.  He is here for his 19th cycle he explains cheerily, he’s now on it for life, as it were.  I feel faintly ridiculous but still can’t get a grip on the waterworks.  Then all of a sudden, I am called, my time has come.  We go through, they are more than happy to let David in with me.

It’s bright and airy inside and we are shown to two really comfy chairs.  They check my Portacath and establish it has settled enough to be used. There’s a bit of pain when they try it the first time, unsuccessfully.  Less so on the second.  And then it’s in.  The source of so much terror for me, drips in, over the next half hour and it’s too late now.  I’m doing this, the treatment of last resort is underway.  While it drips slowly through I observe the man opposite.  He’s not very old, emaciated but he looks happy, chatting with friends and family.  And he’s eating!  Working his way through a sandwich and crisps and I realise I’m ravenous.  As if by magic a Macmillan volunteer pop up offering a sandwich and yes I do want it, I want it very much!  The next step is 5 tiny tablets then we can go home with the third element of the combination therapy to be taken in tablet form for the next 10 days.  I feel suddenly optimistic.  Perhaps I can do this after all.