A quick update – Thursday 28th July 11

There is so much to say about Dom’s continuing good progress.  For a while Dom was doing so much I could hardly keep up.  On top of this there have been many things that have happened which have distracted me from keeping this up to date.  I will have to do a bit more to bring it up to date.

In short Dom’s hair came back quite quickly after he finished treatment but it is soft instead of wiry like it was before, and he swears that it is brown and not black.  In my opinion (and that of most of the people we know) it isn’t but he has a bee in his bonnet about it.  He continues to get stronger every month, his regular physiotherapy has got him to the point where he is able to jog.  Regular check ups for both oncology and orthopaedics have been fine to date.  He has oncology check ups every two months and orthopaedic every 6 months.

He has been taking the starring role in all manner of stuff!  This includes his 5 nights of appearances at the Teenage Cancer Trust Concerts in March where he told the audiences about his experiences.  He did is bit for TCT again on the TV for a segway in the programme So You Think You Can Sing.  This was a fund raising show which had a little section in about some of the kids who have been helped and supported by the Teenage Cancer Trust.

He took his AS Levels this year.  He had to repeat a year of course and so the end of this year saw his year group moving on.  He has formed some strong bonds with guys in the lower year which will be good for him as he goes on to take his A2s next year providing he gets the right results of course.

He and Ngawang were supposed to be going to Vietnam this year.  It didn’t happen.  We did go to Hurghada in Egypt as a family for a week’s holiday and came home only 2 days ago.  We were able to do some diving and the boys went off to the desert on a quad bike safari.

We have sadly lost friends who were on the ward at the same time as Dom this year.  We mourn the loss of Andre, Tristan, Rebecca in particular.

 

 

Tuesday – 1st February, 2011

I’m pleased to be able to report that Dom is doing well.  He continues to go to physio and is making good progress at school.  The musical and kayaking are now major elements in his busy diary.

He has been able to keep in touch with his friends and, after his 18th birthday gives him unlimited opportunity to sign up to all and sundry, he has decided to sign up for a mobile phone contract including a Blackberry smartphone.  Having insisted that he only needed something basic before, his new phone gives him access to messaging, email and the internet, he is very pleased with it.

I was very disappointed to hear that Chloe, who had finished her treatment a little while ago, had had to have another operation to remove a small tumour from her lung.  Ngawang and I visited her at the Royal Brompton Hospital and unfortunately she was having a very bad moment.  We stayed for a little while which gave us a chance to talk with Debbie and Chloe and briefly with Simon.  It is awful that she has to go through more treatment, bless her, and it is very hard on the family too.  I am always mindful that it could happen to any of us.

 

 

Birthdays and check up – Tuesday, 18th January 2011

Dom, January 2011

Hello folks, I’m a bit of a stranger to the blog these days.  I thought I would drop in and let you know that Dom is doing OK.  I should really let you know what happened over Christmas too and I’ll do it later, maybe.  Suffice it to say that it was quiet as the people we were expecting to see on the day didn’t come.  We saw Viv and Kate for dinner on Boxing Day, and very nice it was too.

As you will see from the photo, Dom’s hair has grown back, even the hair on his arms and legs, which was the last thing to return, is growing back now.  He will be as furry as squirrel if it continues much longer.  He is very proud of the paintbrush on the end of his chin which he has chosen not to shave off for reasons alien to me.  Still, I’m his mum and it’s my job to grumble about these things but in the great scheme of things ….. whatever!

Anyhow, the reason for sharing a bit of news today is that it was Dom’s 18th birthday on Saturday 15th January and yesterday (Monday) he had his first proper follow up at UCH.

Viv, my mum (Oma), had her 70th birthday on Friday last week.  Dom, Ngawang and I all went down to Sandwich as soon as Dom had finished school and had a lovely dinner in the company of Viv, her very good friends Denny, Nina and Dorothy and Kate, my sister.  The following day we set off after lunch to get Dom back in time to go out with some friends in the evening.

Unfortunately some of Dom’s closest friends are out of the country and not on hand to help him celebrate but he and Megan from next door went into London to enjoy the clubbing scene.  He had a great night by all accounts.

Dom and Megan on his 18th Birthday

There are some better photos somewhere but I haven’t uploaded them into the laptop yet so you will have to do with this one for the time being of Dom and Megan just before they left to paint the town red or any other colour!

The other reason for me ‘dropping in’ to the blog as it were, was that Dom had his follow up appointment yesterday.  He was transferred to Jeremy Wheelan’s care in the past couple of weeks.  He had his chest x-ray last Thursday which gave the doctors a chance to review it before his appointment.

We (Dom and I) saw one of the registrars, not one we were familiar with, who asked him about his leg and confirmed that there was no changes on his x-rays which Jeremy had looked at earlier.  This is good news.  He is still clear.  We can move on until his next follow up appointment in March.  Yeay!

That’s all for now.  TTFN

An Update to the 13th December 2010

I’m sorry to have to admit that I have deprived you of an update which you are entitled to yet again.  There are two main reasons for this a) when I last did a lengthy update the system shut down unexpectedly and the draft wasn’t saved which left me a little, well, unhappy!  And b) I have lost the will to keep it all as up to date as I would prefer.  Maybe I feel that there is less of a need to rant, put down my ramblings and share the many mini events that have occurred since Dom finished treatment.  And then again, maybe not.  It is harder to do it these days but not because there is less to say necessarily.  Anyway, it’s my fault, as ever.

On to the important stuff and the reason you continue to tune in regardless …. you will be pleased to know that Dom is doing well, all things considered.  You will probably already be aware that he returned to school after the half term holidays and got straight back into it with a help from his teachers to ensure that he was able to catch up.   Since then he has made rapid progress, despite interruptions for physio and single appointment with his consultant’s stand in (Maria is off on maternity leave).  I’m pleased to tell you that he has made excellent progress at school and Ngawang attended the parent’s evening where he was able to hear it directly from his teachers.

Dom’s hair has grown back over the past few weeks with his eyebrows being the first  to show.  His eyelashes soon followed and then the hair on his head which came through as soft as a hamster’s though he won’t be pleased with me for telling you.  He has grown this goatee thing on his chin, because he can and probably because his mate can’t and it winds up his mother (yep, I don’t like it at all but in the great scheme …..?).  The hair on his arms and legs is also starting to return.  No doubt I will be mother to a guy resembling Mr Tumnus in the not too distant future.

As you would expect there has been the odd setback to his progress and his contentment which has included disappointment at not being able to jump straight into a kayak at the first opportunity, warned as he was by Sue (the whizz of a phyz) that he needed a proper support on his knee and a bit more strength before he tackled that.  Long face and misery ensued for a little while but he threw himself into the school play and before term was out, he has performed his part admirably on stage despite missing the first weeks of rehearsal as he was still in treatment.  He did good.

He has had the odd slip and either made his leg or his hip uncomfortable but in Sue’s capable hands he has made remarkable progress.  So much so that by the time we went to see Mr Pollock (all hail!) his surgeon for his follow up on the 29th November, the doctor was delighted with his progress.  He has been fitted with a support which helps to keep his knee in position by Sue and this has speeded up his rehabilitation.

He has secured a job and lost same in the space of a few days which was due to his inability to bend down properly (he sticks his leg out causing a possible trip hazard) but although disappointed, he has realised that with his ambitions to be in the big school musical next year, especially since he was cheated of it this year, it would have been difficult to work and have rehearsals, and school work and a social life all of which he plans to cram in.

For various reasons we were unable to go abroad for a holiday this year after treatment as we originally planned.  Ngawang was keen to save holiday for the trip he and Dom are planning to take to Vietnam next summer and it got complicated trying to find anywhere that did a funny numbers of days in the sun.  I gave up in the end and booked a lovely villa at Centerparcs in Longleat from the 10th – 14th December.  Dom was encouraged to bring a friend and decided on Matthew.

There was no sun, of course, but we had a great time.  The boys went off and did archery, laser clay shooting and quads which they thoroughly enjoyed.  I indulged (worshipped) at the temple of Aqua Sana where I was pampered to within an inch of my life and spent a blissful 3 or more hours whiling away the hours in the spa in peace and quiet.

The only disappointment from the trip (apart from having to go home as far as I was concerned) was Dom not being able to have the massage he had booked because of having had chemo in the past three months.  Unfortunately that was his lasting memory of the trip and not the rest of it.  Bah!

I will add in some pictures in the near future.  Patience requested again!

 

Monday 15th November 10

Hello again.

I’m pleased to say that Dom is making good and steady progress in the Getting Well Campaign.  Since last I wrote, he has been attending school full time with the exception of our trip to UCH for his first post chemo clinic.

On the Sunday before he went back to school he was all keyed up to get back.  The two weeks of half term couldn’t have come at a better time as it gave him a real opportunity to catch up on sleep, friends and planning the near future.  It was refreshing to know that at the time we would once have been packing our bags and preparing for the trip to T12N, we could plan for a relaxed evening having stuffed ourselves silly with a big Sunday lunch and flopped down in front of the TV.  Hoorah!

The following morning Dom was a bit down about Andre.  The subject had come up and he couldn’t shake the feeling of misery all morning.  We went into town to be done to by Sue the Phyiz, (she really is a whizz of a phyiz, if ever a whizz there was …. ), and having put both of us through our paces and rubbed out the knots and stiffness, we left to go our separate ways.  Dom went back to school and I went to the office.  I sent an email to school to warn his teachers about the news we had received and his mood just in case he was too upset to concentrate.

I’m pleased to say that being back at school and involved with lessons and friends of his turned around how he was feeling and he came home in much better spirits.  It was obviously a distraction.

On Wednesday it was tube strike day.  Bloody yippee!  It meant that Dom and I had to walk from Marylebone   We had to get to the hospital and without any sign of a bus that was travelling faster than we were, Shanks’s pony it was.  (Did I mention that we don’t have an unadulterated leg between us?).  Still we had to do it as we had to go to his first post-chemo clinic appointment with the woman who has taken over from Maria, Dom’s consultant, who is off on maternity leave.

Dom went straight to get his chest x-ray done since some dipstick in x-ray decided he shouldn’t have it last week, and would have missed his appointment but as it turned out everything was running late.  When we got there, we saw Bryony briefly before going in who said how well Dom was looking.  She had also had a long walk to work.

We eventually saw the consultant.  Unfortunately, she didn’t have all the information from the investigations to hand, which included the reports from hearing and echo I had handed in the week  before, but she assured us that there was nothing except the original dot in his chest x-ray of any note and since that had been there since the beginning of treatment and had remained unchanged it was not significant.  I took comfort from the fact that he would have been reviewed in the MDT (multi-disciplinary team) meeting last Friday where I would hope all of the investigations were considered.

There wasn’t a hope of Dom getting back to school as everything was so late and he had the afternoon off.  We went onto the ward for a while to catch up with friends and came home when he was done.

Just snoozing!

The rest of the week was straightforward.  Dom was coping well with school but going to bed early every evening.  I had another appointment with Sue the Phyiz to work out the knots that continue to build up on my legs which set me up nicely for my 6 month post op appointment with Cath.

Kate and I took a trip up to Cambridge where Mr Villar (all hail!) is now based full time.  It was great to see Cath again but she did have some disappointing news of her own.  She was very happy with the progress I have made since my last op.  I haven’t seen her, except to say a quick hello to, since just before my second injection of the year when she and Dom set me up.  She was impressed with how far I had come and had never seen me that strong in the two and a half years I’ve known her.  She asked me who my physio was and made a note.  She then left it up to me to call them to make another appointment, presumably if I need to and I don’t suppose I do.

Dom was out with Matthew and friends on Saturday night and had a good night.  On Sunday he got cracking on his homework.  He seems to be enjoying it.  Ngawang and I went looking for kitchens to Magnet where he saw a guy he used to work with more than 20 years ago!

That’s about it.  See you later for the next exciting episode.

Up to Friday 29th October – An update and some very sad news

Dear all, I have been putting off writing this post for some time with good reason.  In the weeks since Dom finished treatment, a lot has happened.

The end of treatment timing was perfect, not that we had a great deal of say in the matter, it gave Dom the two weeks of half term to recover from his rash, to recoup some of his strength and to catch up on his studies so that he would feel more confident going back into school full time. Just to remind you, he hasn’t been able to attend school for more than a day or so here and there since the beginning of the school year in September.  It also meant that we were on plan, which you will know (if you have been paying attention ) has not been without a fight.

I thought that we would be very ready to celebrate and start to do all the things that we hadn’t been able to do but to be honest, I think we were all in recovery and besides, we knew that on Monday 25th October, a mere week later, he would be having a battery of tests to see how he was doing and set the baseline for future check-ups.  However, despite very much enjoying the bottle of bubbly Rosie had given us after treatment, we really didn’t.  Dom did go out twice on Saturday, during the day and again in the evening, but paid for it with a long lie in on the Sunday.  No surprise there!

On the Sunday we had a lovely lunch with Carole, Nicola, Alex and Colin in Farnham.  It was good to see them all.

The following couple of weeks saw our hero catching up on his sleep and adjusting back into ‘normal’ life, or what constitutes it in our house except, of course, it isn’t normal, not really.  His rash improved, he looked better but he couldn’t pass up the opportunities to go back to the hospital to see his friends whenever we went into London for physio or to the focus group he was invited to just around the corner from my office.  I went in a couple of times myself but ducked out of the Friday run as I had too much to do and frankly, there is only so many times I can go up there even if it is to visit friends.

I heard on Thursday when I visited Jules on the ward that Andre was back.  This was bad news indeed as he had finished his treatment a while ago.  I saw Aline, his mum, who was very upset and we had a long talk in the T12N kitchen.  Poor Andre’s oseosarcoma cancer which couldn’t have been removed because of where it was, had spread to his lungs.  It was all the more disappointing, Aline told me, because he had been feeling so well but the tumours were developing fast.

A few days later I heard that he had been transferred to intensive care and was really poorly.

Dom and I had to go into London for physio followed by his baseline tests which included X-rays of his leg and chest, chest CT scan, heart echo, kidney function test (GFR) and hearing.  Although due to some ninny in X-Ray who decided unilaterally to cancel his chest X-ray, he didn’t end up having it that day.  Groan.  I’m pleased to say that although we didn’t have full results of course, both the hearing and heart echo test results were fine.

While we were in daycare we saw Marcus and Yaakov both of whom appeared to be doing very well.  After we were finished we went up to T12 (one floor up) to catch up with Jules and Cole.  I had seen Andre’s dad earlier in the day in the lift.  He said that Andre was still in ICU but that they were hoping to move him back to the ward in the next day or so.  I caught up with Aline and we went to the cafe for a coffee having missed each other a couple of times.  She was understandably upset, poor Andre was very unwell.  We talked for a long time before Dom and I really had to go.

On Thursday of that week, 28th October, Dom, Ngawang and I attended a Rarer Cancer Conference at Chelsea Football Club.  Dom had been asked if he would attend by UCH.  He was the youngest attendee.  He held his own in the round table discussions on treatment with other sarcoma patients, most of whom were at least twice his age.  It was interesting to see what a huge gap there is between the level of care and support given to Dom and that experienced by the other patients there.  Adult services, as they had experienced, were pretty awful.  The value of CNS (the Clinical Specialist Nurses or ‘keyworkers’) was stressed over and over.

While we were there, Dom approached Simon Davies who is the Grand Fromage at TCT to enquire about working or helping at the charity.  He suggested a contact and remembered him from the comedy night at the Albert Hall.

On Friday, I had to work in the office to finish a bid.  When my own phone rang (rather than my work phone) and Debbie the CNS said who she was, I felt a moment of panic!  In my mind were the tests Dom had just been through and I knew that the multi-disciplinary team (MDT) met on Friday mornings, I was therefore worried that something on his tests was a problem.   I remember bursting out and saying “What’s wrong?”.  The news was not what I expected, but it was terrible.  Andre had died that morning, peacefully on the ward.  Aline had asked Debbie to let me know.

Focus was difficult to come by after that but I finished what I had to do with the support of the inestimable Mousumi before leaving to go home.  I phoned Ngawang when I had heard to let him know and make sure that he told Dom directly as, in an age where such news is gossip on Facebook before you can even say “Not fair!”, I didn’t want him to hear it from anyone else.

We had been invited to dinner at Kate’s house that evening.  Mum had come up from Sandwich in Kent to see us, Dom particularly.  We had a lovely meal and a chance to catch up.  Unfortunately, with the news earlier in the day, we were not on top form.  There is no getting away from the fact that once again, and particularly this time, it is a blatant reminder of the reality of this disease’s capacity to destroy lives.

 

 

 

All done, all finished, finally the end of treatment (we hope)! – updated with pictures

This blog entry is long overdue and for once I will forgo my usual apologies as the week that we finished was harder than I thought it would be but not for the reasons you might think.

The remainder of Dom’s last methotrexate treatment went almost without a hitch. Our hero slept through the majority of it though he managed to interact with some of his mates, Cole and Max, towards the end of the week. However, as the days passed, his elbows and some of his knuckles started to show signs of a rash although it was quite unlike the one he had all those many months ago with the same chemo. I pointed it out to staff on Wednesday and on Thursday, when I had gone to Birmingham and Ngawang was Bulletproof Monk sitting, the dermatologists came to see him.

One of the dermos who came had seen him when he had first developed the rash back in January but neither of the two* who saw him were comfortable that it was the same thing. Certainly, it was dark, patchy and sore not itchy and evenly spread as it had been the first time.

Added since last update:

The dermatologists suggested that they would like to have their consultant take a look at it.  She would be available to see him on Friday if he was still an inpatient or as an outpatient if necessary.

In the meantime the ward was filling up.  One of the nurses insisted that transport was booked for later and that he wouldn’t be able to stay.

I’ll admit that as I saw the rash worsen, my deepest fears appeared to be playing out.  I had visions of us struggling to cope over the weekend and the rash getting out of control as it had been before.  In addition, he had developed signs of mucositis in his throat.  Here we go!

I was very upset ,(my eyes were leaking and everything! Wuss!).  The horror of trying to deal with the rash and the mucositis last time came flooding back and, desperate as I was for this to be all over, I couldn’t face going through that again at home with just Ngawang and I to deal with it.  If things progressed, Dom would end up at Northwick Park, on an adult ward, treated by people who had never seen him, didn’t know his history and on his own as neither Ngwang or I would have been able to stay.  It didn’t help either that Dom, because he wanted to be out, was playing down the severity of his symptoms.

Debbie the CNS came to talk to me, so I told her how I was feeling about it and expressed my concerns.  She was very good.

Dom’s nurse that day, Louise, was just fantastic.  She did everything she could to sort us out.  As time ticked by towards Dom’s results (methotrexate labs are due back after 5pm), she had evidently been busy supporting us and working behind the scenes.  I sure it was her that sorted out the move to T12 South Day Care for the night, which is what happened in the end as beds on T12 North were now at an extreme premium.  Some patients had been waiting almost all day for their chemo but because of new patients coming in, they had been badly delayed.  Dom was just one part of the problem.

Once the basics were sorted out, Dom and I went out to dinner.  Dom was in the mood for steak so we ate at the Grafton.  By the time we returned Louise and the other nurses had moved us.  I had said that we would do it and to give me a call but they didn’t.  Dom’s bed on T12N, for the past 4 days, bed 16, was already occupied by someone else.

Jules and Cole

Disappointed though we were to have had to move out of the ward to just through the doors to T12S Day Care, there were two upsides to this arrangement, firstly, we would now be able to see the dermo consultant the following day. And second, Dom could now officially spend time with Cole, something that was some kind of big issue while on T12 North.  Despite having waited  for a bed on T12 North for over a week now, Cole still hadn’t been moved.  However, for now it wasn’t a problem and it meant that the two kids could hang out which was great for both of them.  It also meant that Jules and I could go to the newly opened Paul’s House, where she was staying, to share a bottle of wine and catch up properly knowing that our boys were happy enough.

For the record, Paul’s House is a lesson in how to deliver fantastic facilities for parents, carers and ambulatory patients.  Surely it is possible to provide more of these centres whereby patients can be treated at centres of excellence such as UCLH whilst minimising travel issues and still maintaining family life to a greater extent?

Cole and Dom

We enjoyed our bottle of cold pink and were joined later by Wendy, Sarah’s mum, who had just come in from a night with her colleagues.  We continued to chat amiably for a further couple of hours before Jules walked me back to the hospital where we went our separate ways.  When I got back to the ward, at a little after midnight, Dom was surprisingly already in bed but had made my bed up, bless him!  It turned out that although he and Cole had had a good time playing computer games, they were making too much noise and had been told by the nurses to settle down earlier.  I checked on his rash and asked about his throat, he said they were fine.

On Friday, it seemed strange to be waking up on a strange and empty ward but at about 9.30am another family with a teenage daughter had taken up a bed across the bay from us. It became obvious to us during the morning that she had come in for some blood tests.

The time for transport to pick us up got pushed back repeatedly.  At first it was 11am, then 12.30pm and so on until about 4pm.  This was largely due to the dermo consultant, who had originally been expected after rounds at about 9.30am, not coming up until a while after her clinic had finished at 12.30pm.  It was gone 1.15pm by the time she arrived.

We had lots of visitors from ‘the other side’ (T12N) during the day.  Max’s mum, Linda, came by and had a nice long chat, and Jules came by too.  Dom and Cole spent quite a lot of time together after Dom eventually woke up.

Maria came by to see him after she had finished her rounds on T12N and declared herself pleased with his progress.  She wasn’t concerned about the rash despite evidence that it had spread a little further.

I’m pleased to say that despite my serious misgivings about leaving while Dom appeared to be in the early stages of his side effects, as the day progressed it seemed to me that they were not deteriorating much further.  This led me to think that maybe, just maybe, he might be OK, in which case I had few reservations about going home.  I could feel myself relax so that by the time the dermo consultant looked at him, I was comfortable that it was going to be fine.  The dermatologist confirmed that she too thought it was methotrexate related due to its presentation and that its appearance had coincided with the second week of methotrexate treatment.  She didn’t feel that it was necessary to take any samples.  She assured us that if it did get worse that he could come in to see her in clinic as an outpatient since he had already been referred.  (In normal circumstances he would have to have had a referral from his GP which would probably have gone to Northwick Park and taken forever, or to a private consultant thanks to Bupa).

So that was that!  Dom was free to go and the only other thing to do was to have his PICC line pulled out, which he wanted to do.  I had talked to him at length about keeping it in or taking it out.  He wanted it out, of course, asap.  However, if he was going to have to have hydration due to mucositis, he would need it or have to resort to a cannula which he hates.  I left the decision up to him and he opted for taking it out but accepted responsibility for the choice, he is old enough to do that.

Susan removes Dom's PICC line

On the Thursday, one of the nurses said that if he wanted to have the PICC removed by one of the T12N team, that would be fine so he asked if one of them could do it.  I asked on his behalf, mindful that they were manically busy.  Susan was kind enough to come and do it and scarcely had she got sat down by him and her things arrayed than it was whipped out!  Dom was sitting up and couldn’t believe it, neither could I.  Dom insisted that he wanted the PICC line for his talks to schools and despite his protestations, I washed it, removing the skanky scab that had formed at the exit site that he was so keen to keep.  Yeuck!

The girl in the bed opposite Dom in the T12S Day Care unit had been watching what was happening, as had her parents.  She had fainted twice having her blood taken since she had come in but having found out about the PICC line and asking about what Dom had been through, she swore never to complain about having bloods done again.  To watch the combined horror and fascination of these strangers made me realise how familiarity inures you to such things.  Perspective is all.

The rest of the afternoon was spent waiting for transport which had been put off until 2.30pm by this time, and chatting to other parents or Dom and Cole when they popped by. I had to chase it up as no one had appeared and by that time it was moving towards late afternoon.  The chap turned up shortly after I followed up the transport situation where it turned out that he had been sitting outside since 2.30pm waiting for us.  Our earlier message had not gone through, stuck in the middle bit that is the hospital’s transportation team.

A few minutes later we climbed into the ambulance for what I sincerely hoped would be the last time, having said a few goodbyes, I felt the tiredness creep up on me.  As we set off, Dom took my hand and we looked at each other for a couple of seconds in recognition of this landmark moment.  Despite being a Friday afternoon, the traffic was OK so we were home by about 5pm.  I remember looking out the window as we drove across the elevated section of the A40 watching the sun dip towards the horizon and thinking how appropriate that seemed.

We arrived home shortly before Ngawang and carried stuff into the house.  The cats were there to greet us.  During the evening, neither Dom or I said very much.  Ngawang rustled up some dinner for the two of us.  I was so very, very tired.  All the adrenalin I didn’t know had been there had seeped away leaving  me all but lifeless.   I was in bed shortly after 9pm as I couldn’t keep my eyes open.

Dom slept in for a very long time the following day, but that was no bad thing, except that he had to continue to take his tablets and apply the ointment to the rash.  It was a very quiet day for me as I still felt exhausted.  In fact, it wasn’t until Sunday afternoon that I began to feel a tiny bit better.

And so I finish this episode of the story.  Dom’s rash didn’t seem to be getting any worse and he went back to his usual behaviour at home.  His mucositis never really manifested itself so the things I was most afraid of never happened.  He is fine, happy to be home and done with it all.  I am too.

*It is our experience that dermatologists travel in packs.  They are rarely solitary animals but may occasionally found in pairs.  Perhaps it is because they are the grazers of the medical world and the total opposite of the more carnivorous surgical types.  Who knows?  Just mulling!

Monday 11th October 10

Dom was asleep for most of the day.  His nabilone, (the cannabinoid), was taken at 7am which knocked him out as usual.  By the time his chemo was through, it was enough to keep him asleep.

I went off to physio with Sue and because of the Tube strike the buses were running with delays.  They were also full and the queue at the bus stop was too long, I gave up and walked but was lame by the time I got there.  I got pulverised by the dynamo physio with instructions to take it easy and was given another appointment for more pulverisation next week.

There was little else to say about today really.  Dom’s last methotrexate went up a little late and he remained comatose and remained that way through most of Ngawang’s visit later.

Sunday 10th October 10

I have it on good authority that I am out of it.  I’m not sure what that means exactly but my boys tell me that I seem a little preoccupied.  Err, what?  I’m not aware that I am but I have been thinking about the end of treatment and all that that entails.

Never mind all that for now.  A quick run down of events over the past few days is that Dom did a full day at school on Friday and although he was feeling a bit weary when he left in the morning, by the afternoon when I picked him up he was in good form.

I had originally arranged to go out with Misia but we had all been invited out to meet up with some Tibetan friends.  Although I rearranged the meet up with Misia, when it came to it I was too bloody tired to go anywhere.  It felt like it had been a long hard week and after the boys left in the evening, I went to bed at about 10pm and slept for over 10 hours.  I didn’t hear the reprobates come in at about 1am but I did hear the following morning that they had had a very enjoyable night and I was doubly pleased that Dom had lasted the night.  He made up for it the following morning by sleeping in for ages.  No probs!

Saturday was overcast in the morning but by the time we had pulled ourselves together the sky had started to lighten and it was remarkably warm.  Dom did some school work, he assures us, while Ngawang and I started to look at kitchens and bathrooms for the extension, a search that took us as far as Watford and included a trip to Costco.  Did you know they do kitchens too?  No?  Me neither.

I wanted to work on my silver stuff but I need hours of unbroken time really and I didn’t get it.  By the time we got back and dinner was made it was too late.  I have to be in the right frame of mind to do it and I wasn’t, so I didn’t.  Instead I made light work of several intergalactic foe on my laptop (Mass Effect 2 if you’re interested).

Dom is fine, he seems to be taking it all in his stride.  He slept until midday today, Sunday, but was bright as a button after that.  The day was beautiful, warm and clear.  If the leaves hadn’t been turning and the sun as low in the sky, you could have mistaken it for thinking it a summers day.  Dom spent the day doing his own thing.  I doubt that any school work got done but there is only so much nagging one can do without going hoarse right?

Ngawang and I went to Ruislip and Eastcote once more on the hunt for bathrooms and kitchens.  At least we are starting to get a better idea of what’s available.  After a couple of hours out we returned home, did some chores, packed our bags while Dom sorted through his medications to be returned to the hospital and came up with two whole carrier bags full!

We arrived at hospital a little later than anticipated because the traffic approaching the Marylebone Road was crap!  But arrive we did.  We got clerked in reasonably quickly, were delighted to see that Marcus was in as we hadn’t seen him in ages, then set off for dinner at Dim T’s.  Unfortunately Dom’s dish was way too hot and he couldn’t eat it so he had most of mine.  No matter, I am not wasting away any time soon and I still had a bit of pudding.

Dom’s friend, Cole, is still in T12S and is not back on T12N as he was expected to be.  He is furious and to make things worse Dom is still not allowed to be in the same room as him because of the shingles he had (but has been cleared by the doctors as non infectious).  Dom’s solution to this was to stand at the door and have a conversation with him which seemed to pick up his spirits somewhat.

I feel strange.  I am not aware that I am distracted but I guess I must be.  The boys tell me I am.  I’m finding it hard to think and I am extraordinarily tired.  I have overdone it with my hip and it aches tonight.  I didn’t think I was going to feel worried about coming to the end of treatment.  Far from it.  And yet I feel a touch of anxiety gnawing away at my insides and I’m not sure why.  Is it the fact that we are leaving behind all that we know about how to manage and fix this bloody disease?  Is it that we will lose contact with lots of people we have shared sad times and laughter with?  Is it the intensity of these experiences and how powerfully they bring people together?  Is it the banter with nurses at all times of the day and night?  I don’t know.  Really, I don’t.

Tomorrow is the last treatment.  It’s bloody methotrexate again, the one he is allergic to and which, when given two weeks in a row, gives him the most appalling mucositis/oesophagitis.  We both hope that when Dom gets his side effects, which he is bound to do, it is before we leave UCH or it will be very difficult to manage.

Up to Thursday 7th October 10

Yeah, yeah!  I know.  It’s been an age.  The usual apologies apply.  In fairness, the newly lasered eyes must be considered.  I didn’t use a laptop at all very much for the first week or so, or watch TV, or read a book as one doesn’t tend to blink enough during these times.

After Dom’s reasonable week of chemo, he picked up well and was happy enough to go back to school on the Friday but was tired as you might expect.  We had an exceptionally quiet weekend.  I’m not even sure we did anything of note.  Ngawang took Dom out to do a bit of driving on an industrial estate but that pretty much covers it.   Both Dom and I did start to develop sore throats and a bit of a cold which left us feeling a little sluggish and subdued.

Because of his tiredness and that he only had one lesson in the afternoon, he didn’t go into school on Monday but the following day he was in.

On Thursday, I picked up Dom from school and took him down to see Sue for physio.  He had a very good session and it was apparent that he was making good progress with his knee.  Already there is more a great deal more strength in it which is evident in the way he uses it to walk.  His confidence in it gets ever better.

Dom was looking pale by the time we got to Friday when his Nadir bloods were due to be taken.  He had gone to school but his lips were pale and he was tired.  It was no surprise then to hear from Karen that his bloods were awful when she called me that afternoon.  I didn’t hesitate and pulled him out of school as soon as I heard.  He already had a cold and the cough he had developed was starting to slide down into his chest if how it sounded was anything to go by.  I was worried when I discovered that he was also neutropenic and therefore had no immune system to stop what could easily become a chest infection.

I called the ward and told them the situation.  I spoke to one of the nurses who knows Dom well and she suggested that I either take him to Northwick Park Hospital (aaaaarrrrggghhhh!) or see if I could get the GP to prescribe some antibiotics prophylactically.  Despite the fab Dr Goldwater not being available, one of the others called me back (I certainly wasn’t going to take Dom up to the surgery to sit in a waiting room full of sick people!) who duly did as requested.  Within an hour or so of getting the boy home, he had had his first pill.

I am pleased to say the plan seemed to work.  Over the weekend he picked up tremendously and by Sunday was much more like his usual self.  Despite the cold starting to retreat, he still had a sore throat which appeared to be a touch of mucositis if the symptoms were anything to go by.  Unfortunately, and you dedicated readers will know this by now, there is bugger all we can do about it!  Yes sure, we gave him the revolting sucrulfate which is supposed to line the affected area but it is nasty stuff.  Dom hates it and doesn’t find it that effective.  A battle of wills then ensues between Dom and Ngawang with Dom never voluntarily taking it and Ngawang wanting him to take every precaution to protect himself and minimise the problem.

On Monday I went to a meeting in our Newman Street office, which the other guy had forgotten to put in his diary, which was more than a tad frustrating.  Big waste of time.  After which I met up with Dom at Harley Street when we went to see Sue for physio.  OMG!  She got us working hard.  Maybe it just seemed that way since both of us were not in tip top shape after the colds.  Whatever!  It was good.  Dom did very well, he is really putting in the effort, especially in the classes themselves.

On Tuesday (we’re up to the 28th September by now, by the way), Dom went back into school looking and feeling much better except for the mucositis which was still a bit sore.  I ended up on a long telephone call with a colleague and was standing in the garden in the fresh air and where I tend to get a better reception, usually.  The next thing I know, Dom is walking through the back door towards me.  One of the kids from his school had been sent home with something called slapped cheek syndrome.  For the immuno-compromised folks such as our hero, it could be bad, so no chances were taken.  He was cool about it but with the outbreak ongoing he wasn’t able to go back to school that week. Certainly with the end of treatment now a squirrel’s breath away, no chances were taken.

That evening, Philomena and I finally managed to get out for dinner which we had been promising ourselves to do for the longest time.  We had lovely meal in Denham Village at The Swan (yes ‘again’, I like it!).  It was so good to be able to catch up properly after what seem to be only snatched conversations from time to time for months now, and she’s my next door neighbour!

Wednesday was unremarkable but Thursday was busy for me particularly.  The Free Schools had hit the advisory market which had generated a flurry of activity.  I also had some other chunks of work to get done.

Karen came to the house to do Dom’s pre-chemo bloods.  I had discussed it with the hospital earlier in the week because his Nadir’s had been so awful.  Originally they weren’t planning to do any until he went into hospital the night before chemo, on Sunday.  However, it was agreed that it would be best to do it again beforehand and I’m pleased to say that his bloods were great, the GCSF injection had done its stuff.  I was also nice to see Karen again.  After all, she had been so helpful for all these months we will miss her.  It was an opportunity to say thank you, albeit not a proper one.

By Friday, Dom was feeling fine.  He had been invited to focus group session, run by Top Man, for sunglasses.  Spookily enough, the head office is located just around the corner from my office so I took him in and worked from there while Dom was at the event.  Afterwards, I had a business lunch to go to with one of our associates but Dom wanted to go and visit his mates in UCH.  He is a sweet boy.  Off he hoofed from Newman Street, where my office is located, up Tottenham Court Road to the hospital.  When he was finished there he went to see Matthew.  They hung out together until late afternoon, which was great for Dom.

By the time Dom got home (having walked from Northolt station, well over a mile away), he was tired but had had a good day.  Although some of his friends had not been at the hospital when he went to visit, Cole was there but was quarantined because he had shingles poor thing.  He was only really able to talk to one other person,  but he felt that it had been worth the trip.

On Saturday, Ngawang took Dom out to look at pocket watches.  Dom is a fan.  They tramped up and down Portobello Road having a grand old time from what I can gather.  Later, they met up with Matthew again and went and spent some time in the pub.  By the time they got home it was late evening so dinner was even later.  It was a long day for Dom but another good one.

We all woke up late on Sunday.  I had stayed up until late the night before playing Mass Effect 2, utterly my fault and truly indulgent but hey!  As usual the night before methotrexate, everything focussed around getting back into hospital later. I had some work to finish off, Dom spent time in his room on some school work and Ngawang had a quiet day.

We drove into London and all was well.  The ward was nearly empty when we arrived with only a newbie in the bed opposite Dom on the ‘boys’ bay.  Many of the rooms seemed empty too.  I saw Jules, Cole’s mum, briefly who said that she was now staying at the newly opened Paul’s House at night and coming back to the hospital in the morning.  Cole preferred it that way and it gave them some time apart and a room to himself at night but lots of time together.  If she was needed, she is only 2 minutes walk away from the hospital.

The lovely Linda, an Aussie nurse and all round comedienne, was looking after Dom.  She sorted him out and eventually he saw the doctor after which we went out to eat at Dim T, a noodle and dim sum restaurant.  It was all very yummy.

Although Dom settled down quite quickly that night after chatting for some time to Max and Tristan who had come in after we went out for dinner, I did not.  There were many reasons for this which included the fact that the boys were chatting until late, which was brilliant, but the lights did not go out for ages, then one of the doctors came to see one of the patients at gone 1am putting lights on, crashing about and so on.  Our nurse came in and also ended up making quite a lot of noise too so, I was sunk.  The bigger problem was that I had to get up again at 5.30am to catch a train to Birmingham the following morning.

I was tired but the day itself was OK.  I can say that for the first time in I don’t know how long, I didn’t even think of taking a cab to or from the office from the train station.  It is a bit of a walk but I did it.  I had meetings back to back but we finished early as one member of my team wasn’t able to attend which meant that we weren’t able to deal with one important item.  Since it was one of my team member’s last day, we went out for a quick farewell drink at a local hostelry and after an hour or so, everyone went their separate ways.

Unfortunately, my ticket wasn’t valid until 7.30pm which meant a wait of over 2 hours.  I found a coffee shop after picking up a birthday card and present for Jules (it was her birthday that day) and worked for a while.  I had been very tempted to change the ticket but an upgrade price of £37 put me off.  It meant that I didn’t get back to the hospital until gone 9pm.

Poor Cole, cleared of being contagious but not allowed back on the ward, had had to cancel the arrangements he had made with the ward for his mum’s birthday party and he was not best pleased.  Nevertheless, Jules partner, who would normally be at uni turned up which made things better.  Jules was delighted by her present and got a bit emotional, bless her.

The ward was now full.  Dom had been sleeping all day (I need say nothing, right!), which had meant that Ngawang had had a long quiet stay with him.  Tristan and Yaakov were in and I think both of them were having their last treatments.

I was bushed and climbed into bed as soon as I could.  I slept better than the night before but someone was snoring very loudly and again, there were too many lights on and people talking until late to be able to drop off quickly.

 

Clipper Stad Amsterdam

 

I had to drag myself out of my pit on Tuesday morning.  I had accepted an invitation to a breakfast seminar and had to be in Docklands aboard a clipper, the Stad Amsterdam, by 8am for a couple of presentations, one of which was on University Technical Colleges by Lord Kenneth Baker.  I found out during the presentation that one of our Academy projects is one of the first two, this is good news for us at Tribal.

I rushed back to the hospital to see that Dom was OK, before going out again down to Victoria to meet with PfS.  Unfortunately, the PfS colleague I was meeting there never received my message that, since he had to be at Euston to catch a train and I was based in the vicinity anyway, it might have been better to meet somewhere near the station or hospital which would have given us more time.  As it was, it was a bit of a rush but I had to take a cab back from there as my hips/legs had had entirely enough of walking everywhere and doing countless stairs because the escalators were out.  He shared the cab with me as far as Leicester Square where the unbelievable traffic made it touch and go as to whether he would make his train or not.  He would have done but that was no consolation at the time.

Dom was asleep when I got back but woke up and asked me to get him something to eat.  My legs were dead!  Still the boy must eat so off I creaked to dear old Fitzroy’s to grab him a half heart attack.  He scoffed that before turning over and going back to sleep.  It left me plenty of time to finish another document and redo some month end stuff which had disappeared when a colleague’s hard drive had crashed.

Yaaaaawwwwwnnnnnn!!!!  Sorry, I really am pooped!

Dom woke up for a couple of hours in the evening and chatted to Max.  Poor Max had had a heck of a time while Dom had had his break, having had to have another operation due to an infection in the bone where his prosthetic is.  No wonder he had been in so much pain.  Just awful!  I’m pleased to say though, he is looking much better, if even skinnier, and he is no where near the amount of pain he was in before.

Wednesday arrived and thankfully I didn’t have to be up at the crack of dawn.  It was just as well really, I was out cold until 8.30am!  Oh hell!  Thankfully nothing urgent came through before 9.00am.  Dom stayed asleep all morning.  I had a physio appointment at 12 noon followed by a ‘last supper’ lunch with my outgoing team member.  Stu, I wish you every success.  I know you will do well!

Dom texted me, as requested, with what he wanted for lunch, so Fitzroy’s best customer (who they have never met) once again made short work of a lunchtime baguette.  He stayed awake but not alert for the rest of the afternoon.  We waited for his methotrexate levels to come back.

At somewhere around 5pm his levels came back saying that he was 0.21 and could go.  Not 5 minutes later Cat, his nurse, came back with  the news that it might have been a contaminated sample and that he would have to have them rerun.

At around 7.30pm we got the levels back and he was 0.2 and cleared to go.  Ngawang brought the car in which was the best solution and we were home a little before 9pm.  Yippee!!!  The staff were delighted for us.  It is very unusual for kidneys to perform better towards the end of treatment than at the beginning.

It felt extra luxurious being in my own bed that night, I’m sure Dom must have felt the same about his.  So unexpected!

Despite having cleared and having the opportunity to go to school on the Thursday, he was still very tired and so spent a quiet day at home.  I had to attend meetings in London and having expected to be waking up in the hospital that morning, it felt slightly odd not to have things work out as you had anticipated.

By the time I got home, Dom was much brighter and had managed to get some school work done.

And that’s about it.  Up to date at last!  At least for the next however long.

Live long and prosper!