35. Spectators

Mile 33 – Familiar trails.

As a spectator looking out for friends, the experience can be mesmerising, with a sea of thousands of faces coming towards you. Is that them? Have you missed them? If the runner is wearing something distinctive, perhaps a club shirt, that might help you spot them in the distance. Nowadays the bigger marathons have apps, letting you see where runners are on the course and know when to expect them, so you can go and buy yourself a coffee.

It is also fun watching how other runners get on, looking at the different running styles, and marvelling at how the elite runners can keep up that pace.

On the downside, it’s not so much fun if the runner you are supporting is struggling, and there is nothing you can do to help. I have been guilty of feeling terrible at the end too many times, leaving Sue with the unhappy job of getting me home.

Welcome to this week’s guest blogger, Sue.

Memoirs of a carer

If you’ve been reading Benny’s blog up to this point, you will know that we went to London to begin the stem cell transplant process on 17th September and were lucky to be allowed to stay in UCLH’s own hotel, the Cotton Rooms.  The idea is that, if you’re undergoing this procedure, you probably won’t need hospital care in the first few days, a time during which you’re fit enough to walk around and see the sights of London – although you can’t mix with others and can’t enter any buildings, so it’s not exactly sightseeing.  On 18th September Benny was given a strong dose of chemotherapy to kill off all his remaining cancer cells, and that had passed through his system within a day, ready for the reintroduction of his pre-harvested stem cells on 19th (referred to in stem cell transplant circles as Day 0).  No one can tell in advance how any one person will react to all of this, so from that point onwards it was a case of waiting to see what would happen, of taking one day at a time. 

Looking back, the first few days were really rather nice.  We wandered the streets and squares of Fitzrovia, sitting outside cafes, visiting Regents Park, and wandering along Tottenham Court Road, Oxford Street and Euston Road.  However, unseen by us, the damage done by the chemotherapy was beginning to take effect, and by the afternoon of Day 4 Benny was feeling tired.  At 6pm on Day 7, he had a temperature approaching 38 degrees, one of the danger signs we had been told to watch for, and we phoned the out of hours number, as instructed.  That was the beginning of the second part of our stay in London which was completely different to the first.  The previous blog was Benny’s account of that time; this is mine.

—oOo—

At 6pm on Day 7, we were told to go straight to A&E, which is maybe 300 yards from the Cotton Rooms, to take nothing with us, and to wait to be seen, but on arrival we were whisked straight to a large room on the 16th floor of the Tower Block which was to be Benny’s home for the next 2 weeks and 4 days.  The medical staff swung into action, questions were asked, bloods and observations were taken, tests were ordered, and Benny was given IV antibiotics and paracetamol in an attempt to lower his temperature.  Eventually, at 8pm we were told that he wouldn’t be leaving the hospital and that our stay in the Cotton Rooms was now at an end.  I could stay in the hotel that night, but needed to pack and bring Benny’s belongings to him on the 16th floor, then pack my own things ready to leave the Cotton Rooms by 11am the next day.  Although the ward had a number of roll-out beds, arrangements had to be made for these in advance, and nothing could be done for me at that time, so that meant I would be on my way home the next day.  Whilst I had known this beforehand, and thought I was prepared for it, it still came as a shock.  I’m glad I had taken the time to work out in advance what I needed to do, because by the time I fell into bed at 11pm I had my ducks in a row; Benny was on the 16th floor with all his belongings, and I was all packed and ready to leave the next day. 

The next morning I had breakfast in the Cotton Rooms and said goodbye to the people we had made friends with over the past week or so, never dreaming that that would be the last I would see of many of them.  By now they were familiar faces, and we had begun to swap stories, but once a person moves to the Tower Block they’re in a room on their own and don’t see any of the other patients on that floor.  Sadly, we have lost touch with all but one couple, but hopefully Benny will be able to find out how they fared in future physiotherapy video calls. 

After breakfast, I walked to the Tower Block, taking all of my luggage with me, and went to see Benny, who was extremely tired and in need of lots of medical attention, including observations every 15 minutes plus the previously mentioned tests and medication for his fever.  Later I was to learn that the staff refer to Benny’s condition as Engraftment Syndrome, and it’s common in patients who have been treated with Melphalan (the chemotherapy drug used in his case).  At this stage, the Melphalan continues to take its toll, attacking the patient’s gut and leaving them with sickness, diarrhoea, a sore mouth, fevers, and susceptible to infection.  The medical staff were dealing with the symptoms, looking for a possible infection, and working to keep Benny’s temperature down.  It’s not nice to watch, and it was at that point that I had to take my bags and walk away, leaving him in hospital in London and not knowing what was happening.  This was particularly hard having been as involved as I had right from the start.  From having known everything that was going on, all of a sudden, I knew nothing.  Worse than that, I was relying on Benny to ring and let me know how he was, but he would be totally incapable of doing that for the next week or so.

One thing I should point out is that, although Benny was allocated a room of his own, this was far from the ‘isolation’ ward, with high pressure rooms and hazmat suits, we had been told to expect, although maybe they do exist for those who are unfortunate enough to need them.  I was asked, in the early days, to wear a mask while Benny was neutropenic (i.e. had minimal immunity), but this request was lifted once he began to recover, and in fact, very few people in the hospital as a whole wore masks.  More on this later.                

I went back to London on Day 10 because Benny had asked me to go.  He was feeling confused, disorientated and unable to communicate, and had been told I might be allowed to stay overnight on a roll-out bed.  In the end I stayed for two nights due to the rail strike on Day 11.  The staff were brilliant and made me very welcome, and the bed was unexpectedly comfortable.  I thought I might be in the way, but was never made to feel so, and was able to answer many of the questions staff had about Benny’s experiences, treatment and symptoms to date, so also felt I was of some value.

This was the point at which I was asked to wear a Covid-style face mask, and it did present a number of problems.  First of all I had to sleep wearing the mask, which was both difficult to keep on and rather hot in a heated hospital environment, but it also meant that I was unable to eat or drink in the room, so had to leave and find somewhere quiet for my meals.  To minimize the risk of introducing infection to the room, I would either buy my food from the canteen and avoid the busy areas, or sit on the steps outside the foyer.  I soon discovered that the front steps and the ambulance drop-off and pick-up area at the back of the hospital were popular places for catching a breath of fresh air, especially for those craving a cigarette.  If I had to sit in a busy canteen, I would follow up with a five-minute airing on the steps in the hope that anything I had picked up on my clothes would be blown away.  Over the top maybe, but I didn’t want to be responsible for taking an infection back to the 16th floor. 

One rather notable thing happened on Day 12.  Benny realized that his hair was beginning to fall out, so one of the health care assistants shaved his head.  What was most strange about this was not the fact that it happened, but the fact that so much else was happening that it almost paled into insignificance.  By mid-afternoon on that day it was time for home again, and again there was that feeling of guilt as I left the hospital.

In between visits I was at home for either two or three days at a time and I spent that time catching up with post, emails, rearranging appointments, doing the washing, but most of all, acting as ‘press secretary’, which was Benny’s label for me.  Every text I sent would prompt a (most welcome) reply and I found the time just disappeared in conversation with all the lovely people who have supported us throughout all of this.  Before I knew it, it was time to return to the hospital.    

I was back in London again on Day 14 because Benny was still feeling confused although slightly better by the time I arrived.  We were told that, whilst his symptoms were due to treatment with Melphalan, his blood was now beginning to return to normal, so there were two processes going on here: the response to the Melphalan, and the ‘engraftment’ of the stem cells as they made their way back into his bone marrow.  Alongside that was the possibility that he also had an infection, hence the continued fevers and numerous tests.  He still wasn’t eating or drinking properly and all of his needs were being supplied by drip or syringe driver.  Despite that, however, breakfast, lunch and dinner were unfailingly delivered to his room, and I would save the more easily digested items and store them in the fridge in his room.  It became one of my jobs to rotate these jellys, yoghourts, custards, mousses and so on to ensure that he had something that was still in date to reach for as and when his appetite returned.  Neither of us realized how long that would take.  This time I stayed for two nights, again because of a rail strike, and will never forget the sound of the IV monitors which were a source of constant background noise.

After that I was at home for two and a half days, but then needed to go back to London on Day 19 because Benny needed clean clothes.  I was there for another two nights.  By this time I found I often woke in the night wondering where I was, Euston Road was as familiar as the village high street, and I was more au fait with the rail timetable than some of the St Pancras staff, but the good news was that Benny had begun to eat more normally, he was disconnected from the drip stand, and the doctors were beginning to talk about him coming home by the weekend.  If you’ve ever been discharged from hospital, you will know that it’s not easy to find out precisely when you will be released, and it was exactly the same here, so before I left, I tried to discover just how it would work if I happened not to be there at the time.

Unfortunately, it seems there are procedures for such things which were not to be shared with us until the time came, and as we had rather dreaded, I was at home when Benny was told he could leave hospital.  The train as a means of transport was out of the question due to his lowered immunity, so we had arranged that a friend would pick him up, although the logistics of that were not easy to establish.  He had a small suitcase full of clothes, plus a rucksack and a number of carrier bags which would all need to be packed and moved, together with Benny himself (not feeling his best) to the ground floor.  UCLH doesn’t have a taxi rank, or indeed anywhere for visitors to park, unless they’re disabled, so anyone coming to pick him up would need to be there at exactly the right moment in order not to receive a parking ticket.  I had said that I would travel to London in the morning to help with all of this, but had expected the discharge to be relatively early in the day – not 2pm!  The discharge procedure did swing into action, and Benny was helped to pack, to reach the discharge lounge, and finally into our friend’s car, but it all felt rather unplanned, despite our efforts to make arrangements in advance.  Luckily, the friend who had offered the lift is a good friend, because he spent seven hours on the road that day.

Well, that’s about it.  Benny came home on Day 23 and we now have to keep him away from sources of infection as his immune system recovers.  Counting from Day 0, the day he received his stem cells, this is supposed to take about 100 days which will bring us to 28th December.  That will be a late Christmas present to look forward to!   

Tips for carers during stem cell transplant                     

If you’ve read this far and are looking for tips on supporting someone through stem cell transplant, these are mine:   

•            Think about how much to pack.  Try to cut down on the amount you need to carry, especially if travelling on public transport.

•            If money is an issue, and you’re at UCLH, make use of Lidl in Tottenham Court Road, and the UCLH canteen where you can buy a plate of food for £3.60.  

•            Make sure you know the route to the hospital from your ambulatory care hotel and don’t give yourself too much to carry between the two.

•            Plan for the moment your loved one goes into hospital (transfer of luggage and leaving your lodgings).  It comes as a shock when it happens, no matter how prepared you think you are.

•            Be ready for the emotional shock of being away from them and unable to find out how they are doing.

•            Think seriously about how often you can visit.  The balance between home and hospital can be hard to manage.

•            Plan for discharge, as far as you’re able.

Thanks for reading and take care.