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.


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…

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. 

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.




Appointment with Doom – Feb 2003

I don’t recall how long exactly it took for my biopsy appointment at Addenbrookes to come through, only that it felt like forever.  I felt then (and to my shame still do!) a foolish pride that my referral letter from the N&N described me as a charming 32 year old lady.  I’d never knowingly been described as charming before and I rather liked it.   All I vaguely recall is going to the hospital the evening before the operation and a very kind female doctor shaving patches of my head on one side.  I must have had the operation some time the next day. I don’t even remember how long I stayed in.  But I do remember vividly a conversation I had with the surgeon, I think, following the biopsy.  “I’m generally a very positive person”, I said, “but I do want to try to prepare myself for what’s ahead.”  He took my hand, gave it a gentle squeeze.  “There’s always a treatment”, he replied and I felt very comforted.  Entirely reassured.  Once they knew exactly what it was they were going to deal with it and all would be well again.  I relaxed and went home much happier to wait to be called back for the results.  Again I don’t remember how long this wait was nor how my mood was.  I think all felt okay, the busyness of my everyday life continued though I was not working at all at this stage, my company had me signed off on full pay so I had no financial concerns, something I’m well aware made me far more fortunate than the vast majority in a similar position.

The day came for me to be called for results with the Addenbrookes team.  David was coming with me and for some reason, we decided to make the trip by train, rather than drive.  Just in case the news was bad, we felt it would be better not to be driving.  This was most unlike us.  Perhaps this was our insurance policy – if we are prepared for the worst, the worst won’t happen.  If so, we had gone with the wrong provider.  But a train route had recently opened up between Norwich and Cambridge so we gave it a whirl.  I think we made plans on that journey, of things we do with our garden, planting we’d do, flowers we’d nurture. Planning a future we desperately wanted to be seeing.

We went in to a room and saw a single doctor, a neurosurgeon, quite young, not one I had met when I had my biopsy.  I don’t remember his name.  What was the preamble?  Did he bring up images of my scan?  I don’t think so.  I imagine he told us something about the frozen section not being entirely clear but that it was a grade II/III oligo-astrocytoma in my front parietal lobe. He probably talked about how it was going to affect the motor function on my left side because the right side of the brain controls the left of the body. There was probably other technical information I didn’t take in.  What I did take in was the following words, “It’s inoperable and it’s incurable.”  My world stopped.    I believe he said “I can’t tell you if you’ve got 3 months or 3 years. “, or words to that effect.  I heard nothing after “3 months”.  But there’s always a treatment!  I wanted to scream at him.  The other one promised me, there’s always a treatment.  Much of the rest is a blur, David and I were both sobbing uncontrollably.  The doctor was clearly uncomfortable but I think he told me that I would be feeling anger and be in denial and that he would refer me to Oncology who would discuss next steps.  The journey home was almost unendurable.  It was cold and grey on Cambridge train station and all I could think about was my children and their young lives and that I wasn’t going to watch them grow, I wouldn’t be around to nurture them, be there for them when they were sad or hurting.  That I would be gone, before they even had a chance to create memories of me.