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.

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.

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.

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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.  

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.

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.

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.

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 31^st 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.