Radiotherapy Begins – May 2003

It’s an odd feeling, being in hospital when you feel completely well, yet that is the situation I found myself in.  My consultant, the lovely Sarah Jeffries wanted a close eye kept on me as I started the radiotherapy.  I suspect the near miss of the cyst had given more concern that I fully appreciated.  It was a surprise to me when the Registrar who had told me I had Gastroenteritis when I had my last appointment appeared on the ward and came over to me to apologise for not spotting the intercranial pressure build up.  In fairness to him, there had probably been a lot of bugs about.  On the other hand I think it may be a bit of a gimme on the tick list of things to rule out in cases like mine but we all know how tight the NHS has had to become with things like scans and this is the unenviable balance Doctors have to strike.  Anyway, no harm was done to me although I stIill fear the poor ambulance folk who’d had to lug a semi-conscious me down the stairs would now have terminal back issues.  See now Tories what your cuts do!

Sarah Jeffries also had a quiet word with me to indicate she was aware of the short comings of the Research Fellow in terms of his lack of ability to listen to his patients and suggested while I was staying in hospital I should engage with him as much as possible.  Naughty but he did deserve it the arrogant git.  For the next week I amused myself by practising yoga moves in front of him when he came on his ward rounds.  He remained reluctant to engage in discussing the merits of them or any diets or supplements with me but I persevered the entire week.   Entertainment was hard to come by as the ward I was on was depressing indeed.  The other patients were, by and large, in a very bad way.  One especially was truly terrifying to me.  A lady by the window who was calling out in pain and distress throughout the day.  Her body would contort with the pain of her situation.  There seemed nothing anyone could do.  She was not particularly elderly, perhaps in her 50s.  One day when her husband came to visit her we had a chat.  A few weeks before she had been a perfectly healthy working woman and grandparent.  One day, on her way home from a meeting, she couldn’t find the way.  It transpired her brain was filled with an aggressive grade 4 glioma.  She remained on the ward for only a few days before she was moved out to a hospice. 

With the pressure relieved from my head, I was now feeling absolutely fine.  A porter arrived to take me for my rescheduled radiotherapy. “Well you’re a lot better now!” he exclaimed.  I was a tad baffled as I didn’t have a clue who he was.  He soon filled me in. He was the porter who had tried to take me to my radiotherapy previously.  He was a very cheery fellow.  For anyone who’s ever watched programmes like Casualty, the nurses and doctors do not spend time listening to your life stories/woes, they simply don’t have the time.  But people like the porters and the auxiliaries who bring round the food, they’re the ones who bring the sunshine into the day.  The others on my ward were in such a bad way, most of them couldn’t eat.  But some of the auxiliaries who came daily would make a point of trying to find out if someone would be ensuring they had managed something.  A fairly hopeless task, given most were, I think, beyond being able to eat.  But they cared and that really shone through.  Hospitals are so busy but beyond that so medicalised, small acts of kindness and caring go far.  I was feeling fine which meant my usual interest in food had reasserted itself so I really looked forward to the food rounds.  And whether it was because of the chance of some human interaction or the large quantity of steroids I was dosed up on, I had an enormous appetite.  To this day I have fond memories of some lasagne I had on that ward….

The radiotherapy itself was no problem at all.  I popped on the mask and it took no more than a minute or so, as had been promised.  For the next 6 weeks I would be repeating this once a day.  The first week was easy as I was remaining an in-patient.  After that we would see. By the end of the week they were happy to release me for the weekend.  This was coming not a moment too soon. I hadn’t seen Ned and Posy for well over a week which was like an eternity.  I’d never been separated from them for more than 24 hours before.  I couldn’t wait to see them.  When we arrived home Ned came running down the path to greet me.  I went to give him a hug but as he reached me he very deliberately stopped and turned his back on me.  I think that was my worst moment so far.  He couldn’t have made his feelings any clearer.  He was only two and in his young mind I suppose I had abandoned him.  Posy was fine but quite clingy to Debbie and that too was hard for me.  Less than a month before she would yell if anyone but me held her and while I was glad she seemed content, it hurt me that her affections had switched quite so swiftly.  But what could we do?  There was nothing David or I could do but continue to get on with it.


Things take a really bad turn – May 2003

We had returned from our travels and broadly I was feeling okay. My sister Catherine came to visit and it’s really her account I have to rely on for much of this chapter. Catherine had arrived first and our friends, Peter and Natalie were also due to visit that weekend. Catherine has told me that I was in bed when she arrived, I do have a vague memory of seeing Peter and Natalie a bit but I think David was left to be the entertainment while I slept.

Things worsened after Peter and Natalie left. Catherine says I started to have seizures which she found very shocking as she’d not witnessed them before. These would have been the awake seizures I was having though I thought these were more under control at this point as I was on Tegretol, an anti-epileptic drug to control them. I’d broadly been lucky in that the medication was effective for me, it isn’t for everyone. So at this stage the fits had been mostly under control. I certainly wasn’t having full fits with loss of consciousness. Usually the fits had settled to being a curious buzzing in my head, I could still move and my hands still worked fine. I could speak. I had learned to try and relax when they came on. Relax and breathe through them. Trying to fight would just prolong them. They were unpleasant but I’d got used to them and was having very few by this stage, but that weekend I had in the region of seven and that was alarming.

I think Catherine called a doctor out but it was a weekend and the on-call doctor who came was disinterested and useless. I think he told me to take more Valium and perhaps more steroid and that was the level of his help. By Sunday I was still in a bad state. Peter and Natalie had left but Catherine remained. Perhaps Catherine is a panicker, I don’t know but if she is I’m glad of it, she almost certainly saved my life. David was finding it hard to deal with, he was not really coming to terms with my illness and tried to pretend these incidents weren’t happening. He was also probably trying to focus on ensuring the kids were okay. I don’t remember seeing them in this state and I wouldn’t want them to have been frightened by it but it would have been strange for them being away from me as well.

Anyway, by Sunday evening, Catherine had had enough and called the on-call doctor again. This time we struck lucky as the lovely Dr. Duthie appeared. I remember being in a lot of pain and he said he was going to have to give me an injection in my arse (he won’t have put it like that!) did I mind? I cared about nothing by then and the shot went in – diamorphine I believe, it’s good stuff, knocked me right out – and I remember no more. Which is probably just as well as the ambulance arrived and I assume some poor sods had to lug me downstairs which won’t have been fun for them, and soon I was being sped off to Addenbrookes.

I have only very hazy memories of being there. At some point they must have given me a large dose of steroid because I did wake up and from my sister’s account, when she called me on Monday I was really quite chirpy again. Unfortunately for me, this was a bank holiday weekend so there was no sign of my consultant, instead I was under the care of a Fellow, a fairly inadequate chap with an inflated sense of his own ability. He decided he had things under control and that I could start my radiotherapy that week as planned. I had told my sister I was fine and there was no need to visit until Tuesday. That’s the last I remember, she tells me that when she arrived on Tuesday I was in a very bad way again.  I was unable to coordinate getting my hand to my mouth to take the tablets I had been given by the nurses earlier. My sister was particularly cross about this as in my attempts I had spilt water all over my bed. No one had noticed.   The Fellow, arrived to check me before I went for my first radiotherapy. He took no notice when Catherine tried to tell him the state I was in was not normal for me.  I was still conscious at this point but barely.  A porter then arrived to take me down for the treatment but questioned whether I seemed well enough.  We went anyway, with me on a trolley and we waited in the corridor for two hours. I was again no longer conscious. At some point the radiologist came and said that they could not treat me in that state. My consultant, Sarah Jeffries then arrived, I assume summoned by the radiologist. I gather she took one look and organised a immediate CT scan which revealed a massive cyst had developed on my tumour. It was this that was causing all the problems, causing intercranial pressure leading to the headaches , sickness and now, essentially, coma.

An emergency operation was organised for that evening. I must have been briefly awake, as I remember asking the anaesthetist if he was single as I was here with my sister who is very attractive. I also asked the surgeon who was to do the operation if he was good at the op, he said he was, well he was hardly likely to say no unless he had a particularly dark sense of humour. Happily that is all I remember, I was clearly high as a kite, God knows what further nonsense I drivelled.

Apparently during that day, David, my Mum and my sister Min arrived. Suffice to say I came through the operation intact and with a shiny new device in my head called an Amoya Reservoir. This could be used to drain fluid out of the cyst when it filled and thus relieve the pressure build up. They would keep me in Addenbrookes for a week or two and then, all being well, the radiotherapy would start. I think it was a relief for everyone. I was now feeling absolutely fine and I think it was kept from me just how bad my situation had been . Min told me later that it had been touch and go whether I would make it through the night but she may have been dramatizing things to make me feel like a hero!

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.

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.