Chemo and after

Yesterday we went to Southampton General Hospital for my chemo.  I was put in a side room with an en suite so it meant Raymond could be with me most of the time.  This was fortunate as 12 minutes into having an infusion of rituximab I collapsed.  I have had this drug before but the lymphoma has moved into a different class, blastic mantle cell lymphoma which is much more aggressive.  I started feeling very sick and flushed.  I got up with Ray’s help to go to the toilet and collapsed.  Ray pressed the nurse’s call button but no one came.

Apparently the call button merely activates a light outside the room rather than at the Marsden where it actually buzzes until someone comes to the patient’s aid.  I was unconscious for a while during which time Ray called out to reception where someone told him that the nurses had gone for a cup of tea.  However, apparently after that the emergency routine was activated and soon there were six people in the room including the registrar.

The drug was stopped and I rested while various questions were asked.  Treatment later restarted with the drug being infused very slowly.  Gradually it was speeded up so I didn’t have to stay overnight.  I would have been afraid to as Ray wouldn’t have been allowed to stay and I didn’t have much confidence if an emergency were to happen.  They are all very nice and caring but having seen the watchfulness of the Marsden I am not as confident.

My oncologist rang this morning to say that he will not be continuing with the rituximab which he does not believe is very necessary, so this means I can have the next chemo at home.  I find it safer at home as a nurse is with me all the time and still has the equipment at hand if anything goes wrong.  I have been warned that things will get worse before I get better and I must contact the hospital about any side effects, not just of the chemo, but my very low blood count.  I may have to go into hospital for transfusions of blood and/or platelets.  I just wish I were nearer to the Marsden.

Dr M also told me that the lymphoma had spread to the bone marrow which is what we had all expected so it is probably pretty well everywhere, hence the decision to give chemo.  He is likely to arrange for another scan in two weeks and has asked me to monitor progress of my neck so he can see if this particular chemo is working.  If not he has already arranged with BUPA for me to have another chemo regime which is not yet licensed in the UK.  He is certainly doing his best for me by being very pro active.  I have had lots of lovely messages from family and friends which are a source of encouragement to us all.

Things have changed

What a difference a few hours make.  Yesterday I was quite upbeat, not about my situation but how we were handling the medical procedures prior to the chemotherapy.  This morning my oncologist telephoned.  The situation is serious and the lymphoma has changed its form and its rate of growth.  I have to put all my energy into dealing with this situation.

Things we had planned to organise over the next few weeks must be done now. 

Temporary fix

Tuesday was a brilliant day.  You see everything is relative.  Two, possibly four years ago, if I had visited two hospitals in one day, had blood taken and a CT scan during which a cannula was inserted and dye put into my body, I probably would not have written that opening sentence.  So why the change?

For several days the swelling on my neck has grown.  On Monday both sides were affected together with my left shoulder.  My throat was constricting.  I think most people would find that disturbing if not frightening.  I didn’t think I could wait until the chemotherapy started on Thursday so my oncologist arranged for a prescription for steroids to be made up for collection by us on Monday from the hospital pharmacy, when we came in for the bone marrow procedure.

I know this is only a temporary fix but by this evening a lot of the pain had subsided, the tablet which was stuck in my throat had gone and the swellings had reduced by about one third.  I am ecstatic.  The swellings were pushing up into my jaw line so it was difficult to move my head.  I am writing this late at night on Tuesday and I think the effects of the steroids will mean I shall not sleep tonight but at least I don’t have to fear that my throat will close up altogether.  Of course, now I am hoping that the chemotherapy will continue the work as I know the steroid effect is not long-lasting.

Today I had blood taken by someone who was being overseen by a more experienced nurse and she didn’t get the needle properly inserted into my vein, but the older nurse just manipulated it slightly and the blood could be withdrawn.  Sometimes they have to find a new vein.  They were very apologetic but actually they had not caused me much pain so I told them about my bone marrow treatment the day before which was the least painful I had experienced.  They wanted to know who carried it out and when I told them, they said that the nurse was working in the next room but she would be pleased to learn of my comments as usually it is quite stressful.  I know I moan about the General and needless to say the parking was difficult, but I have had some excellent treatment this week.

Then it was off to the Nuffield for the CT scan.  There are quite a few different types of CT scans depending on which part of the body is to be looked at and not all require the patient to drink a liquid prior to the scan.  The practitioners were actually very competent and I didn’t have to have the cannula inserted into the back of my hand  (very painful) as has occurred quite frequently in the past – something else to be grateful for.

With all the different procedures going on, I hadn’t had the opportunity to consider my neck, but I suppose if it had been as painful as it had been recently I would have done.  By the time we reached home I was delighted that the swelling has reduced even if it  is just for a short time and relieved that a few more medical appointments were behind me.

Keeping grounded

I had a rather sleepless night and I am thankful for the Kindle so I can read without disturbing Raymond.  Actually later he woke too and we talked.  Obviously I am frightened because my neck is growing at such an alarming rate and my stomach is giving me trouble as well.  This has got to be the first time I have been willing the chemotherapy to commence.

I am sorry to be putting my family through all this.  There is nothing I can say or do to make it any better.  As I know, it is difficult when someone dies suddenly as everyone is totally unprepared.  Even so we don’t know what is going to happen over the next few weeks so we can never really be prepared for this period in our lives.

I am getting used to the nightingales singing as I am often awake between 3.00 and 4.00 p.m. when they seem to have centre-stage.  There were also some other unidentified noises of another animal/s so we are never completely alone.  I did look out of the window trying to see them but the night was very dark.

Raymond had some photographs printed on the sequence of shots he has taken of the wildlife in the garden over the summer.  The deer look so beautiful and at home in the garden.  It was also interesting to see how their coats change in colour according to the seasons.  Our favourite pictures have got to be when the young fox appears and stares at the deer, trying to play with them and obviously thinking he is some sort of cousin.  As the pictures are on film I am sorry that I can’t post them.

I started the steroids today.  I hate them.  I do so hope that they won’t change my personality or make me lose or gain weight.  As I remember, particularly when I was on CHOP-R chemotherapy, their effects can be totally overwhelming and unwelcome.  However, if they play a role in helping to stabilise or reduce the swelling, then so be it.

We are on a rollercoaster, being taken along by numerous health professionals.  We can’t get off because each piece is related to some other part of the total treatment.  I feel I am just a patient and I will have to work hard to keep my identity and individuality.  The creatures in the garden keep me grounded.  During the day there is so much activity and the garden belongs to them really rather than us.  Watching the mischievous squirrels trying to steal the bird feed, the way in which the birds look through the kitchen window if we are late putting out their food, Starsky’s playful behaviour in the conservatory, the visiting black cat watching the woodpile hoping the mice will emerge, all help me to realise that life is going on and I play just a small part in it.

The joys of gas and air

This morning Ray and I went to Southampton General.  I was due to have a bone marrow aspiration at 11.00 a.m. but true to form they had mixed up the appointments and told us to go and have a coffee.  I had the most peculiar Eccles cake imaginable.  A true Eccles cake should have light, crisp flaky pastry with a filling of dried fruit.  This one was stodgy and the filling tasted too spicy.  After that pleasurable start we returned for the procedure.

The nurse who carried out the bone marrow removal was both kind and competent.  As it is quite painful and uncomfortable I asked for gas and air which was already in the room.  Apparently they used to give general anaesthetics but some time ago discovered it was “better” done using local anaesthetic injections.  First of all the liquid bone marrow is withdrawn from the pelvis.  The next stage goes deeper into the bone to extract a core.

This was my fifth or sixth and I have to say it was the least painful of them all.  I wasn’t offered gas and air at the Royal Marsden which is why the patients dread it, but we are all different so for some people it may be less painful than for others.  Ray has been teasing me about the effects of gas and air.  Certainly it makes you feel a little light-headed.  The results should tell my oncologist just how far the lymphoma has spread.

I think it has spread to my stomach area as I have the bloating which I had when I was first diagnosed.  This would mean it has crossed the barrier of the diaphragm.  Tomorrow I have the CT scan at the Nuffield which will indicate the spread and location of the disease.

When we came home we were both tired.  Ray didn’t sleep well last night but it is more than that.  I think there is an emotional toll not only about the procedure, but actually having to go to the hospital.  Around us some of the nurses or visitors are light-hearted but we can’t really be, at least not for very long.

As I write this it is just after 4.00 p.m. and it is pleasing to see that the days are just slightly drawing out.  The day itself was cold but sunny as was yesterday.  It is good to see the trees looking less sombre.  I am just about to start taking the tablets which are the precursors to my chemotherapy so it is all becoming very real.  We have to hope for a good outcome.

Strength for the days to come

I am very tired and it’s only 2.00 p.m.  I did quite a bit of cooking this morning making a trifle, the filling for a game pie which was a casserole cooked in wine, and baked the pastry bottom of the pie ready for tomorrow.  Whenever Jonathan comes down he always offers to do the cooking but as it is such a short visit this time, I don’t want us to spend all the time in the kitchen on Sunday so I have cut down the cooking time for tomorrow but I just don’t have the stamina. 

I know I’m very anaemic which accounts for a lot of the tiredness.  I am having my blood taken at the General on Monday, but no matter what the results are I have to go ahead with the chemo on Thursday because the swellings are so awful.  I am just hoping it will be effective.  I shall write a little more tomorrow.

••••••••

I am writing this early on Sunday evening and we have had a really lovely day with Jonathan and Josie.  They arrived yesterday evening and left in the mid afternoon but we were able to talk, sit by the fire and have a good lunch.  I made a game pie which I have never made before.  I looked up the recipes but couldn’t find any single one which I really liked so I made up my own.

Today was very relaxing and cosy but the time quickly went.  On one hand I don’t want to monopolise Jonathan’s time at weekends but on the other it was better that he should know how ill I am so we can make the most of the time we do have together, without any regrets.  Raymond laughs because Jonathan always analyses the ingredients of meals but it is just like most members of my maternal family for whom cooking was an important skill.  I doubt if I am going to be able to cook much like today in the future as I get very tired. 

It is difficult letting go, whether it is something like cooking or the teaching I have done for years.  Obviously I have built up so many different materials for teaching adults, secondary school pupils and individual learners.  It is no use keeping things which I will no longer use and like quite a number of my clothes, they will have to go to a good home.  However, it is not all about giving up or letting go; it is about making changes to our lifestyle.  Certainly I have done more writing in the last two years than ever before.

The coming week is full of medical appointments culminating in the start of the weekly chemotherapy.  It was good to have a weekend together, enjoy each other’s company and build up our strength for the days ahead.

Life is so strange

I was just starting to write yesterday when the post arrived and I went to open it.  It was 4.00 p.m. which is late even for Royal Mail.  Just before it arrived I had been thinking how much I had been encouraged by two chatty emails and a telephone call.  I like to keep in touch with what is happening in other people’s lives as it makes me feel less constricted.  Most of the post consisted of catalogues of items I am not going to buy but there was also a card which I shall treasure.  I love phone calls and text messages but somehow a handwritten card is something you can look at again and again.

The card was a map of Venice and, of course, I could not help but think of the two very happy times we spent as a family visiting Venice.  The first time we arrived by boat which is the traditional way to approach Venice.  The second occasion was by train and far from it being an anticlimax all of a sudden we arrived at the station and came out of the concourse immediately onto the Gran Canal.  Immediately all sorts of memories were evoked of the narrow streets, the markets, the masks and colourful headgear. 

In fact, in recent days I have been thinking about all sorts of things from the past.  Occasionally someone else remembers something which is deep in the recesses of my mind and usually the memories make me smile.

As so much of next week is taken up with hospital visits and procedures, we are hoping to have a good weekend.  I decided to go to Waitrose to pick up a few items I can’t obtain locally.  It was good to feel like a normal person going shopping independently like everyone else instead of a patient. 

I have had a call from my oncologist saying that the chemotherapy will start on Thursday in Southampton.  I told him that my throat was swelling more every day and he suggested that as I shall be at Southampton General on Monday, if I am at all worried he will prescribe some steroids.  These will be a stopgap until the chemo starts.  Whatever my worries on that score, and the underlying disease, I am encouraged by the kindness and efficiency of the medical professionals.  So despite the pouring rain, the early darkness and the prognosis, I can’t be miserable all the time and a kind of happiness creeps in.  Life is so strange.

Just as I was going to sleep I had a message on my phone from a friend which reassured me that Ray and I were doing the right thing with our practical plans.  People are so kind.