Sunday, 30 January 2011

Thank you for your support

I am as weak as a kitten so this blog will be short.  Anna has been helping me to piece together the missing days when I was in intensive care.  It looks as if my immunity suffered a spectacular crash after chemo.  I think I had pneumonia followed by chicken pox which affected my brain and liver.  Judging by my orange skin, my kidney function was also affected although this is now improving.

Undoubtedly, the drugs then administered kept me alive but the nightmares began literally and metaphorically.  I thought for a while that only I knew about the filthy conditions, the appalling food and the quality of nursing care.  There were exceptions particularly in intensive care but later I was reduced to a haunted shell.  My family gradually became aware of the conditions but were torn between the importance of the clinical care and the degradation which was occurring.  My good friend, our lay reader, also observed what was going on and one of the people she spoke to was Rev. W.

When I was strong enough to insist on discharging myself, I met opposition.  Did I know my own mind?   Did I know what was wrong with me?  Had I thought about the effects on my family?  I was bombarded with NHS jargon – palliative care, offers of nutritional advice – always for tomorrow never assistance for today.  I insisted that Raymond should be telephoned to take me home.  This put him in an impossible position as he knew I still needed acute clinical care but then everything all came together and his horror of what I was going through meant he came for me.  At first I was told security would prevent my leaving and Raymond was not allowed to bring in my clothes.

Then we had to talk to the doctors to show that I was adamant.  I don’t think I have ever been so quietly analytical and obdurate in my life.  There were no arguments which could not be countered.

Raymond found a wheelchair as I watched a very confident cockroach cross the floor near to ward reception.  Once I was dressed and in the wheelchair I have to say I have never moved more quickly along hospital corridors.  En route we met Rev. W who had been visiting another parishioner and was on his way to see me.  Ray didn’t break his stride but I explained what we were doing and I was amazed to see a clear understanding in Rev. W’s face.  He went ahead and found the lift for us.  Ray lifted me into the Jeep and we drove home.  All the streets were wider than I remembered and the houses and shops seemed to be sporting lovely colours after the dark world I had been inhabiting

Friday, 28 January 2011

Escaping from hell

Clinically I should be in hospital.  After very strong chemotherapy which totally wiped out my white blood cells, I contracted shingles/chicken pox, something my body could not withstand.without an immune system.  I spent, so I am told, about a week in intensive care.  I was in and out of consciousness – then transferred to another high dependency ward.  I think I was in a catatonic state for some time.

Medically the best care should have been in hospital but in all other respects I have been in hell.  This blog must be short as I am very ill.  It is better to be at home regardless of outcome as the degradation I was suffering was frightening and despite my family’s best efforts, it was impossible to secure my physical and mental wellbeing when they could not be with me.

With great difficulty I managed to discharge myself from hospital yesterday.  Ray got me into a wheelchair and we made our escape.  Security at first resisted by preventing Ray from bringing in my clothes.  It took absolute determination to counter medical arguments but I was being reduced to a frightened shell.  I won’t write any more now but gradually if I do get stronger I shall explain.

Tuesday, 18 January 2011

The rollercoaster of chemo treatment

It is a bright, sunny day which helps to lift the spirits but it is also very cold.  At least I feel the cold as I usually do during chemo.  I can’t believe I am going to have another session this week.  I am just about to ring BUPA to make sure that everything is in hand for blood counts on Wednesday and chemo on Thursday.

I am able to use the computer although not very accurately at the moment. But it does give me access to the outside world. Talking on the phone is more difficult because my throat is so sore but some of the swelling has gone down which is obviously a good thing as there is never any guarantee that a chemotherapy regime will work, especially at this stage.

I shall find the chemo at home much more difficult without Anna’s reassuring presence.  She always holds my hand while the cannula goes in or doesn’t go in as it is very painful, especially in the back of the hand.  I was very lucky that she was a home so much during my previous treatments and although she phones me every day it is difficult to be so far apart.

Jonathan is coming down this weekend which gives us something to look forward to and good for Raymond as he spends so much time with me.  The following weekend is one of Ray’s courses, so Anna hopes to come down.  It will not only be great to see her, but she can cook while Ray is busy, not that I am eating a great deal at the moment.  I am feeling less sick right now and have been able to keep coffee down but soon I am back on the rollercoaster so we’ll have to see what happens.

I have just had an email from my cousin Susan in Canada.  She is always sympathetic and encouraging.  She was describing a trip she and he friends made last weekend to frozen lakes, children skating, snowmobiles swooshing past and massive icicles.  I wouldn’t like the cold at the moment – 18 degrees, but the picture she painted was so atmospheric.

Monday, 17 January 2011

The effects of chemo

Yesterday and today the effects of chemo have taken over and I feel very ill.  The steroids cause miserable dreams when I do get to sleep and I seem to be in a state on semi-consciousness most of the time.  I am drinking water and lemonade perpetually with all the consequent effects day and night.

Yesterday I was very sick so I am not really eating anything.  Ray did me some consommée which was good and I know it is causing him problems to find something I can keep down.  My throat is very sore so he has gone to get me an alcohol free mouthwash.  Everything is happening to other people and I feel I have retreated into a very small world or medication and discomfort.

I hate to seem so sorry for myself but a gloomy day in January is perhaps not the best time to be feeling upbeat.  I think Jonathan may be able to get down this weekend – it may be the week after, I am not too bright at the moment.  I am looking forward to seeing him and it will be a real break for Raymond.

In the past chemo has been given one week after which I have had two to three weeks to recover.  I am not sure how I am going to cope with weekly chemotherapy as I seem to be growing physically weaker.  Even getting out of the bath was difficult.

I have just had a nice phone call from a friend.  Although my throat doesn’t allow me to speak for very long, she is always very encouraging and is offering to sit with me if Ray has to go out.  My head is just one big headache at the moment so I am off to drink some lemsip – a glimpse of the high life.

My oncologist has just rung me to go through my symptoms.  I think he is surprised I haven't had to go into hospital yet as I think he was expecting it with such low blood counts.  He has advised me not to go out at all and the way I feel at the moment, I am only too happy to comply.

Saturday, 15 January 2011

Practical arrangements

I have been getting over the strain of the all-day chemotherapy on Thursday and coping with the side-effects of the cocktail of drugs.  We did do some practical things yesterday afternoon.  The rest home where my mother lives has been trying out a new device for deafness.  It is not a hearing aid which someone wears all the time, but a special device which can be used to have a conversation.  They were delighted to have tried it on my mother and for her to be able to hear what they were saying.  They passed the literature on to me and if it proves to be good, I think we shall get one for her so that she is less isolated.

Then we went to do something we had both been rather dreading, seeing a funeral director.  I told Raymond that I would be much happier if I knew that my mother’s funeral arrangements were all made and paid for.  If the home also knows what we have done, they can alleviate any anxieties she may have on that score as she is rather forgetful.  It also meant I had to think about my own arrangements which can be a blueprint from which the family can work later on.  I felt that if I didn’t have to worry about things like that, I would be able to concentrate on trying to cope with the disease better.

Margaret, a good friend to us and our parish church lay-reader, has been a wonderful sources of help and strength as she is to so many people in our village.  She has been able to advise us what to do as we were really quite ignorant.  She also has a great sense of humour so nothing is all gloom and doom.

Today, hopefully we can relax.   Ray is exhausted as it is a very emotional time and he is trying so hard to support me.  I’d love to be able to say that I can see a real improvement in my neck.  It hasn’t got any worse but it could be that the steroids are keeping it from growing larger.  Inside my throat I think there may be a slight improvement and I can swallow most of my tablets except one, without their getting stuck.

It has been a strange week. My mother is 97 and I never really thought about it but I suppose I assumed I would outlive her and always be there to care for her needs so it has been a cause of some worry that I am likely to go before her.  However, she has earned so much love from her immediate family and from the carers where she is now living, that I feel much more confident now that she will be happy and well looked after.

Friday, 14 January 2011

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.

Wednesday, 12 January 2011

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.

Tuesday, 11 January 2011

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.

Monday, 10 January 2011

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.

Sunday, 9 January 2011

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.

Saturday, 8 January 2011

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.

Friday, 7 January 2011

The importance of polo necks

Raymond and I had a long discussion about the practicalities of our situation.  It has been something we have avoided with each of us ploughing our individual furrow.  I don’t mean we haven’t discussed my treatment and prognosis but there are all sorts of practical things like wills and funerals which, when you are hopeful of a successful outcome, you avoid like the plague.  I have persuaded Raymond that once we have tackled these matters I can relax more knowing that I haven’t left a mess for others to sort out and then I can concentrate on survival.  As you read this you may think it is all very morbid but I haven’t given up; there is always hope.

I have an up-to-date will but my mother hasn’t; she leaves everything to me and I am her executor.  In the normal way of things that would be fine but I don’t know what happens if I go before her.  I also want to make sure that she is properly cared for during and after I have chemotherapy.  As she is very deaf, she is already very isolated, so I would like to ensure she has visits, letters and telephone messages to the home which I know the carers will pass on to her.

Other people’s reactions to our situation vary enormously.  Most of our friends, even quite new ones, have been very supportive but occasionally we have had some surprises where a few relatives have avoided us perhaps out of embarrassment at not knowing what to say.  I don’t think what is actually said is so important; it is the act of making contact which is so warming.  I think Raymond is going to need quite a lot of support over the next few months – not because he is weak – far from it, but because the situation is difficult and he is so supportive of me.

On a lighter note, I have just looked at my head and neck in the mirror.  I strongly resemble a footballer who has headed too many balls.  It is a good job it is winter and I can wear polo necks at the moment but I hope the swelling doesn’t get any bigger before the chemo starts.

These last few postings have been rather dark and gloomy because they have been rather factual and all about lymphoma.  Fortunately, in every day there is some humour and pleasure and we shall never give up hope.

Thursday, 6 January 2011

The way ahead

I was awake for a long time on Tuesday night and Raymond was unable to sleep much either.  In order to keep going he has always seized upon the encouraging remarks made by the doctors because it is something to cling onto.  It’s not that he has his head in the sand but he doesn’t want to be morbid and upset me.

We travelled to the hospital along the shore and could see two Cunard liners in port.  Later as we drove past the docks we noted that four other cruise liners had come in on the morning tide.  I can hear their hooters as I write this.  All are sailing on the evening tide and it will be quite a sight for anyone standing on the shore.  The vessels are travelling to different parts of the globe taking with them thousands of happy passengers on board.

At the moment Ray and I are neither happy nor hopeful.  I had my blood taken and a chest x-ray at the hospital.  Both were on screen by the time I saw Dr M.  He had discussed my case with the head of radiography and both agreed that further treatment was not really wise.  On examination Dr M could see that new swellings had appeared.

As ever he is very organised, has contacted BUPA to put forward proposed courses of treatment for their approval, has organised my bone marrow aspiration for Monday at Southampton General and will arrange for a CT scan at the Nuffield.  We discussed the various chemo regimens still available to me.  As I have had so much treatment in the past two years, whatever is chosen will not be a full strength version, particularly as my platelets are low.  It has been decided that I shall undergo weekly chemotherapy.  The first session has to be at the General in case of a bad reaction but subsequent blood tests and chemo sessions can be carried out at home.  I was pleased that BUPA actually suggested that even before we requested it and that their reason for it is that patients prefer it, not the usual ‘because it’s cheaper’ which is the common mantra these days.

Dr M says that all these arrangements are subject to his discussion with Dr P at the Marsden.  There is a lot of mutual respect but they need to be in touch to be certain which drugs I will be taking and proposed lines of treatment.  However, discussion notwithstanding, it looks as if next week will be busy with medical appointments.  Obviously I am not happy about losing my hair again, it having only just grown in but far more important and ominous is the knowledge that any of these forms of chemotherapy has a 30% chance of success at most.

Once again we are gambling but in the back of my mind I know that previous treatments have never been completely successful for me.  Remnants of the mantle cell lymphoma always remain.

Outside all the hooters and sirens of ships in the port are sounding out and fireworks are being lit.  It is a time of celebration for so many individuals and good to see the port busy with liners once again.  Life goes on.

Wednesday, 5 January 2011

I am in a place where I have never wanted to be

I am writing this on Tuesday evening after my last piece was posted.  I have to do something or I shall become very upset.  My oncologist rang just after we returned home and I have an appointment to see him tomorrow (Wednesday).  Prior to seeing him I shall have my blood taken so the results should be with him when he sees me at 1.30 p.m.  In addition, I shall have a chest x-ray.  He has had a word with the head of radiography who confirmed that more radiotherapy can be given to reduce the neck swelling but further treatment of the throat would cause lasting damage which they want to avoid.

It all comes down to whether the lymphoma is isolated to the throat/neck area or whether it is apparent elsewhere.  This may mean a bone marrow aspiration which is not pleasant.  However, it could be that lymph nodes elsewhere are affected without the involvement yet of the bone marrow.  At all events if there is disease present anywhere else, the most sensible course of action would be chemotherapy.  Unfortunately, there is no guarantee that any of this will work.  The lymphoma is now more resistant to chemo and is growing back more quickly.  I am in a place where I have never wanted to be.

After I was told that the transplant had not prevented the return of the lymphoma, I was informed that the future was uncertain and that it might be slow growing and there were a variety of treatments still to try.  I think we can dismiss the idea that it is slow growing.  I know that the medical personnel will do their best and try to keep up my spirits but it is not easy right now.

The festivities of Christmas and New Year have kept me going and apart from my thoughts in the small hours, I have managed to keep everything in proportion.  Whilst I try to be positive, I can’t say I am optimistic.  However, if I succumb to self-pity, it affects all the family so I must pray for the strength to cope and I hope that any regular readers of this blog will be kind enough to pray for that too.

This is the most difficult journey of all.  I know that there will be good times and moments of laughter as well as tears.  Other people in similar situations have maintained their hope, faith and good humour so I have plenty of examples before me.  Writing should help to keep me better balanced.  I don’t usually stay miserable for long as something pleasant invariably crops up not necessarily for me but for other friends and members of the family.


I wrote all this yesterday.  I had received a couple of telephone calls which really lowered my spirits and Raymond was out for a short while.  Although he is affected by all of this, he tries so hard to keep me positive. I did consider not posting this but I am not always strong and this indicates the way in which events have an emotional toll.  I am feeling stronger today because we are actively doing something and we will take part in the decision making.  

Tuesday, 4 January 2011

Britain is back to work

Britain is back to work today!  I telephoned Southampton General and left a message for my oncologist about my neck.  He will be in tomorrow so we’ll see what he advises.  I don’t know how the growth in my throat has been affected by the radiotherapy but I don’t like the way my neck is swollen.  I think it unwise to leave it until February when I am due to see him next.

I have to say it is always worse when I am lying awake at night.  Usually I have one or two hours sleep at the beginning of the night and then wake up.  When the nightingales start singing I know the time is about 3.00 a.m.  They go on for a couple of hours.  The time between 3.00 a.m. and 5.00 a.m. is the worst for being awake and worrying.  Ray always tells me I can wake him and sometimes he is awake for part of this period himself, but I don’t want to disturb him as he has things to do and really keeps the show on the road.

I have taken down the last of the decorations and put them away.  We both like to go through the cards again as often there are messages in them which sometimes we don’t take in just before Christmas.  Ray has been taking some of our excess rubbish to the recycling centre; we seem to accumulate paper and cardboard boxes.  I have a few bags for the charity shop so if we are able to deliver them this afternoon the house will be much clearer.

Earlier on in the day Ray took Starsky to the vet where he had two injections.  He is really very good and jumped into the pet carrier of his own accord.  What with everything else it meant that Ray was busy this morning and all the birds collecting around the feeders were giving meaningful looks to us in the kitchen.  It was quite uncanny so I dropped what I was in the middle of doing and went out to feed them.  It is still quite cold although we have adjusted to the colder weather, so I think they are glad of our efforts.

We shall do a few errands this afternoon but I am not venturing into Southampton to the shops.  I know a number of people who have been affected by the flu.  It doesn’t seem to have been a 48 hour infection and some have been bed-bound for a fortnight.  On the way back we will call in at the farm shop to stock up on fresh fruit and vegetables.  Although we enjoyed the festivities, it is also good to see everything getting back to normal.

Monday, 3 January 2011

Seeing the light

We now have security lights on the garage, the work having been done over the weekend.  Raymond is particularly pleased but I’m not sure the deer will like them very much if they venture into the front garden in the night as they occasionally do.

I have done quite a lot of turning out of cupboards in recent weeks.  There have been many trips to the charity shops with clothes I no longer wear and books I do not wish to read again.  I hate the thought of waste so I hope they will be useful.  When Jonathan telephoned earlier he said he was going to do some tidying and that inspired me to tackle a cupboard containing lots of videos.  We have nothing to play them on now and many date from when I was teaching so I went through them all but I’ll let Raymond decide what he wants to retain from his collection.  What I did find were some DVDs I had been searching for.  I think I must have put them in the cupboard before I went into hospital when I was trying to rationalise everything.  Jonathan will be pleased as there are some he has been asking to see every time he has visited.

In many ways it has been good that we have all had a few days holiday, respite from the usual cares, telephone calls and letters to be written.  Business really does come to a standstill at this time.  However, tomorrow will see a gradual return to normality.  I have enjoyed being able to relax but relaxation is only really pleasurable for me if it occurs after I have done something and you can’t break the habits of a lifetime.

Over the Christmas period a paternal cousin gave me a little piece of information to go into the massive jigsaw which is my background.  Furthermore, she thinks my father’s sister knew or guessed about my conception.  In recent months I have not gained any further information until now and it has been somewhat discouraging.  Some of my paternal cousins found out about my conception from the Daily Telegraph article in December 2009, but I have been very tentative about approaching other members of the family.

When I have done in the past, there is too much subjectivity and a feeling that as I grew up in a loving family, it shouldn’t really matter.  Those of my parents’ generation clam up altogether as it is a taboo subject to them.  I have always reassured them that I know my parents loved me, but I could and should have been trusted with the truth.  I don’t believe I shall uncover much more at this stage but the medical history would have been valuable for my son and daughter.  I am hoping to talk to some other relatives on my maternal side soon whom I do not see very often and perhaps, just perhaps, they will understand how I feel and be able to add some information of their own.

Throwing more light on the subject is always useful.

Sunday, 2 January 2011

A good beginning to the year

My mother asked me some very direct questions about my health when she came to see us.  I told her that I had enlarged glands in my throat and base of my tongue and that I had received radiotherapy.  I didn’t say anything about the transplant not having worked in stopping the return of the lymphoma but no doubt she will make that connection.  It is unlikely that she will raise the point as she knows I won’t lie to her; I have just not wanted to worry her.  Fortunately, as it is some time now since we learnt the significance of the return of the disease, I am less emotional and would be more able to handle the discussion.

I say discussion, but of course we can’t talk as she is so deaf.  I have to write almost everything down so that it is difficult to have a continuous conversation or explain things in detail.  I do regret this as I have always had a good relationship with her and was able to talk to her about so many subjects and could appreciate her wisdom, experience and good humour.

She was thrilled with her presents from Jonathan and Anna.  She has a great bond with them both.  I think this really stems from the time she spent with them when they were younger.  She would come with us for walks in the woods, New Forest or along the shore.  If I was working she would look after them, telling them stories and acting out games in which she was always the ‘baddie’.

She was fascinated by my Kindle.  She is a great reader herself and knows I love having plenty of books around me.  She was intrigued to know that I could download books onto a machine small enough to put into my handbag.  Things have changed so much in her lifetime and she remembers her own mother taking her to see an aircraft very early on – just in case they didn’t last!  Later on two of her brothers were involved in the aircraft industry and her younger sister helped to build the Spitfire at the Supermarine Works in Southampton during World War II.

In the evening we went to a nearby restaurant where we had a really good meal.  The staff seem to stay there for a long time and one of the waiters always enquires after Jonathan and Anna.  There weren’t so many people as there would have been on New Year’s Eve so it was very relaxing and good to do something normal.

I do so wish the throat swelling would go down.  Dr P warned me on Monday that it could grow back very quickly so it may be that I haven’t had enough radiotherapy.  I know radiotherapy is very effective against mantle cell lymphoma so perhaps I shall have to have more treatment.  In other respects I am feeling quite well – it’s all relative as other cancer/lymphoma patients will appreciate.

Saturday, 1 January 2011

First day of 2011

The start of a New Year is so full of promise that there is a buzz and a feeling of making a fresh start which is highly infectious.  It affects me in this way no matter what the reality may be.  The date 31st December is always special for Raymond and me as this is when our daughter was born.  I remember the icy path to the car as I set off for the Princess Anne Hospital.  There were no parties for those of us with new babies, but being on the fifth floor I could look out and see snow on the hills far beyond Southampton.  It was a thrilling time and I have to say that the period when our children were small was a time of great happiness.

When I was younger, or at least a little younger than I am now, I never regretted the passing of the years; I never wanted to go back to a younger me.  I felt, and still do, that every age has its difficulties and its rewards.    As we age, there is a quiet confidence we didn’t possess when younger and we can take pleasure in the experience we have in our profession or hobbies.  It is sometimes sad when circumstances mean we can’t use that experience but I am a firm believer in new doors opening. 

I always hoped that when I retired I could ensure that my horizons did not narrow.  We wanted to travel more and I planned to study for my PhD.  After spending years busy working outside the home, retirement meant being able to spend more time together.  Well the best-laid schemes don’t always materialise and perhaps I’m not the best judge of what is right for us.  I do know that as a family we’d like this to be a good and memorable year.

This morning my mother is coming over for coffee and I look forward to seeing her.  I have presents to give her from Jonathan and Anna so she will be delighted.  Later this evening Raymond and I are going to one of our favourite restaurants.  We hope it won’t be as crowded as it would have been last night but we think it will make an enjoyable start to the year.

A Happy New Year to you all.