Last day of February

Traditionally February has been my least favourite month, still wintry and often no signs of spring.  The excitement and conviviality of Christmas and the promise of the New Year are behind us.  However, this February has meant recovery which is slow but real.  On television there have been programmes which have been a real vindication of my decision to leave hospital and I hope they help other people who find themselves in the same position.

This has also been a month in which I have seen members of my family whom I have not seen for a little while and this has really been heartwarming.  Weekends have brought visits from Jonathan and Anna which have not only been wonderful for me but I can really feel that Raymond is having the support he needs.

This morning I am hoping that the tiling of the bathroom floors will begin.  I can never be sure until work actually starts.  We got up early and re-arranged the bathrooms and I think the ceramic tiles will make a difference.  Every year we have always had some project going on in the house to improve it and I think this one should cause the least upheaval.

Tomorrow is the start of March and I can’t help looking back to last year when I was in the Royal Marsden having the high dose chemotherapy.  Although the whole thing was a difficult and dangerous procedure, the nursing was so competent but always with time for kindness.  On 4^th March last year I received the donor cells which could have saved my life.  Naturally, I am dreadfully disappointed that in the end the transplant couldn’t work for me because some of the mantle cell lymphoma remained and has grown back at a very fast rate.  However, I shall always be grateful that someone quite unrelated, gave me a chance of life with her donation.  The possibility of its working also gave us months of hope.

But back to the present.  The tiler and his assistant have arrived and it’s still quite early so the project is underway.  The nurse comes soon to change my dressing and tomorrow I am at the hospital all day having pentamidine and blood transfusions.  So it is the start of another week.

Sun and hailstones

The day has started well as there has been some sunshine – surely a precursor of spring.  The “experts” have said that spring will be earlier this year so I hope they are right.  As I look at the bulbs emerging and the first daffodils, I am willing the others to come out.  Yellow flowers give such joy after the drear of winter.

I had a better night without the cramps of the previous day.  However, I have noticed that some areas of my skin have started to flake and I am desperately hoping that I do not have a return of the Graft Versus Host Disease which made life so difficult before.  I can tolerate all sorts of discomfort but that was so debilitating physically and mentally.

I think I spoke too soon about the weather; later on there was a real hailstorm and patches of hailstones on the grass and drive.  All in all it has been a mixed day.  Jonathan went back to London but engineering works would have made his journey quite tortuous so Ray drove him to Fareham to catch the train from there.  It was so good to see him.

I suppose when people question me about how I am and the prognosis, I am forced to be realistic but I can’t always put it into words for other people.  The lymphoma is so fast growing that I rely on the weekly chemo to keep it at bay and possibly reduce it slightly.  However, there comes a time when a particular chemo no longer works and other drugs have to be tried.  It is all going to depend on there being another drug to try, it being effective and it not sending me back into intensive care.  I try to keep calm but I can’t be complacent and I know how difficult it is for Raymond.  He is churning inside but tries to keep calm in order to support me.  As he says, he is using work, the case and various other projects as a distraction and I can totally understand.

Days like today

I had a rather patchy night’s sleep as I had a lot of cramp in my legs which I think is another side-effect of the chemotherapy.  I slept in a little later than I had planned and had a hot drink plus crumpets and honey for breakfast.  As I surfaced I realised that we were in for a good day.  Not only was Jonathan here and obviously so happy about quite a challenging shoot he had been doing on Friday, but we were going down to Worthing to visit my aunt and cousin.

Today has seen a mixture of sunshine and showers.  The temperature is noticeably milder and not only do we have the hazel catkins but the rather more elegant birches are drooping with catkins too.  These portents of spring really do lift my mood and we enjoyed our drive down to Sussex to see my aunt and cousin.

Jonathan hadn’t seen his Godmothers for some years and it was lovely seeing them catch up.  He is very engaging and really interested them when he talked about his work and the camping he does in quite extreme weather (at least camping in January seems extreme to me!).

We all enjoyed the afternoon and the hours went so quickly.  I think we left at about 5.30 p.m. but the long slow dusk lasted until we reached the outskirts of Fareham.  Luckily I had not done anything demanding in the morning so I didn’t get too tired in the afternoon as we always have interesting and amusing conversations with the family.

In the evening Ray and Jonathan watched a DVD while I read.  And now it is the end of a relaxing day.  I think I surprised my aunt and cousin when I said I was happy.  I would, of course, rather not have a terminal illness.  I would prefer to live longer and not live on a knife-edge but so many people and so many things make me feel a real contentment.  Days like today are to be treasured.

Seeing the family

Today has been quite busy with the nurse coming in the early morning to change my dressing.  Then Anna and I watched a DVD before Raymond brought my mother over for coffee.  Anna hadn’t seen her for a few weeks so they were really pleased to see each other.  Conversation tends to rely a lot on writing messages for my mother to read but she was able to catch up with some of Anna’s news.

Just before lunch Dr M phoned about the transfusion.  It has been all change and everything will happen on Tuesday.  After lunch I had chemo and had my blood taken so that Dr M can be quite sure I need the transfusion.  Mark will take it to the General and fill in a form which Dr M forgot to give me.  It has to be done early so there is plenty of time on Monday to irradiate the blood.

I am beginning to experience some side-effects from the Vincristine part of the chemotherapy i.e. cramps and pins and needles in my hands – also lack of feeling in the fingertips.  Dr M has decided that he will probably change the drugs for next time so that the problem does not get worse.

We haven’t done anything eventful over the past days with Anna but Ray was able to assist her as she is teaching a module on forensic photography.  I know it pleased Ray to be able to help and she learns quickly.  Anna and I had lots of chats which is just what we both want at the moment.  She has not really been eating all that well recently because she has been staying late at work, so we remedied that with a good roast lunch.  Yesterday evening we sat down together and watched Charlie Wilson’s War which made us all think.

By mid-afternoon it was time for Anna to go.  We shall miss her as we were all so pleased to see each other.  This evening Jonathan is coming down and will probably arrive at about 8.45 p.m.  I wrote before that these few days would be rather mixed and at first that mixture was mainly bad, but now having both Anna and Jonathan here is a very good time indeed.

A very mixed week

This could turn out to be a very mixed week.  I felt some symptoms in the night of a possible urinary infection and we phoned the out of hours service.  Although they have not yet received my notes from the GP, it is obvious she had been in contact so that the response to me was prioritised.  Our initial call was at about 3.45 a.m. and the doctor arrived at 6.15 a.m. which wasn’t bad. 

The doctor confirmed I had a urinary infection.  He prescribed a broad spectrum antibiotic which I have started taking but said that analysis was needed so that a more specific antibiotic could be used.  Sometimes I am rather tentative about the quality of doctors for the out of hours service, but I felt he really knew what he was doing which did help.

We are actually seeing Dr M this afternoon but I didn’t dare wait the twelve hours before seeing him before taking action.  In my situation, what might seem to be a minor ailment to others, can swiftly take over because I have no immunity and this could lead to severe kidney problems or sepsis.

Just before 9.00 a.m. my BUPA nurse arrived to take my blood for testing so that Dr M can see the results on the screen this afternoon.  He is a reassuring presence and told me that as I haven’t any fever or other symptoms, the infection may clear up before Friday and Dr M may decide to proceed with treatment.  Of course, Dr M has the full picture and he may decide otherwise.

Somewhere in all this my regular appointments to have pentamidine have been overlooked.  I did contact the GP but nothing has yet been arranged and it is prescribed really to prevent today’s situation, i.e. to ward off infection.  I didn’t feel it very sensible to get on to my GP today in case Dr M can shortcut an appointment for me.

I must now take what means I can to speed up recovery.  Obviously drinking plenty is the usual means of flushing out the germs and Ray has just gone out to buy me some cranberry juice.  I hate the taste of it and it is very acidic which doesn’t agree with me but I think I can’t be too choosy.

I wrote at the beginning that this could be a mixed week.  We have a possible chemo on Friday afternoon but also visits from both Jonathan and Anna to look forward to.  I just hope the cloud of the effects of infection can be dispersed quickly and we can enjoy some family time together to the full.

Tapas

It was very difficult watching the Dispatches programme last night about hospital food.  There is an even more harrowing one next week about end of life care which I shall not watch.  Although recent investigations highlighted in particular the plight of the elderly, the issue of hospital food goes across the board but it brought back really awful memories for me.

Many hospitals were built without kitchens or just the facilities to cook for staff and visitors.  So many people are malnourished and dehydrated and I was affected by both problems.  Yesterday when my GP came, she could understand how weak I am because of the time it takes to recover from the sepsis etc. but she did comment on the fact that I look well.  The reporter on yesterday’s programme commented on how energised he felt after one good meal which I think came from the private patients’ menu.  It is true.  Since leaving hospital I have had proper, well-cooked food and it is impossible to explain not just the enjoyment, but the feeling that even if you can’t eat much, there is so much goodness in the meals one is eating.

Today we had lunch out as we visited Gunwharf Quays in Portsmouth.  Our visits to places are not long as I tire easily so it is quite good to sit down and have lunch especially if we don’t actually go out very early.  Today we had tapas which gave us a good variety.  The day itself remained fairly gloomy with a fine Scotch mist or light rain but it was interesting looking around as it is mainly under cover.

When we reached home I was really very tired so lay on the sofa and had a read while Raymond made me a hot drink.  Unusually for me, I then had had a short sleep, which I have done a few times now, never having had the knack before in my life.  Dr Mead telephoned to catch up with how I am and confirmed that I shall see him tomorrow when, after the blood tests, he will determine which chemo I shall have on Friday.

Once again - report analysis

Our well-planned Monday has been thrown a little into disarray as the community nurse cannot come to change my dressing.  She normally comes at 9.00 a.m. which frees up the day and today Dr H, my GP, will come between 11.30 and 12.00, after which we had planned to have lunch and go out to do some errands.

As the community nurse has a cold, I can understand why she cannot come since my immunity is low but the substitute could not say whether she would be able to arrive in the morning or afternoon; it might even coincide with the GP’s visit, so we have had to suggest that the dressing is not changed again until Friday.

Today I need to look at report regarding Ray’s case.  It is from the other side’s orthopaedic surgeon whom we saw in the Isle of Wight.  Ray is required to read it carefully and make comments.  Whilst I am happy also to read it through and make comments, I dread all the repercussions, the exchanges of long emails and point by point analysis.  I have really gone past the stage when I feel I can do this.  I do understand how unjust Ray feels about obvious mistakes in the report but the points begin to dominate our conversation as the case once more takes over.

Since the nurse didn’t come, this meant I could look at the report before 9.00 a.m. when I was still fresh.  Raymond had pencilled in notes on errors and I pulled some of these together and put down my reactions just on a sheet of A4 paper which he is now discussing with the solicitor or his assistant on the phone.  The report cannot be signed as it is but I am hoping Ray will see the solicitor face to face to suggest the alterations needed.  This has relieved me as it can all become overwhelming.

I had some ready-made puff pastry which I had been going to use over the weekend until we decided to have a lunch out on Saturday.  I made a quiche with onions and chorizo and as we seem to have lots of small potatoes, I also did a potato salad.  I still like to cook but I can’t leave it to the end of the day when I am tired.  Ray is quite willing but knows I still like to prepare meals and now we are eating our main meal at lunch time on the whole as it is rare for me to be able to be out for a full day.

Ray has had to put so much time and effort into this case; I find it difficult to believe that all clients end up doing so much of the work and analysis themselves.  I hope the solicitor will now take a greater share.

Relaxing over the weekend

Chemotherapy went smoothly on Friday; I soaked my hand and wrist in warm water and the cannula went in first time.  As it was the milder treatment it was all over fairly quickly.  As I had rested beforehand after a few jobs early on Friday morning, I was able to be still alert by the time Jonathan arrived from London.

On Saturday morning after the men had their bacon sandwiches for breakfast, we went out as Jonathan had something to buy in Tescos, but it didn’t take long.  We then went to Bishop’s Waltham, a village not far away.  It is easy to stroll around and we found a very spacious charity shop.  They really benefit from having more affluent donors and sharp-eyed Jonathan found six shot glasses which he also thought he could use for tiny appetisers.

We went to a rather quirky place for a light lunch but I couldn’t eat much, just a poached egg on a crumpet.  I was really ready to come home afterwards and we watched a DVD and I dozed on the sofa.  I needed to rest as we had planned to go out to dinner at a local restaurant which is one of our favourites.  It was nice to be able to dress up a little and feel suitably rested.

As usually the staff were friendly and we all were pleased with our choices.  I have never had a bad meal there as it is always of a consistent standard.  At the moment I have to be very careful about eating out as I would have no immunity or resistence against unhygienic food preparation.  We spent about two hours just enjoying the meal and chatting.  When we returned home once again we watched a DVD.  Not a very dynamic weekend you might think but perfect for me as I could rest while not being completely house-bound.  It is lovely to be able to spend time with Jonathan and Raymond just relaxing and chatting.  Naturally, they spent some time considering their various rods and equipment for fly fishing but I am so happy that they have such a close relationship.

Jonathan returned to London this morning to spend some time with Josie.  She was working on Friday and some of yesterday but I hope they really enjoy the rest of the weekend.  Raymond is going to collect my mother presently and I look forward to seeing her but as she is so deaf it takes a lot out of me.

Chemo day

Anna had been hoping to come down this weekend but she really is overloaded with lectures to write, marking and examination setting.  In addition to her normal lectures, she is teaching a special module for Exeter University which means travelling down on a Sunday.  I do hope the workload eases for her as it can be quite stressful but at least we can keep in touch by phone.  I am quite relieved that she has decided to postpone the visit as the hours of journey time are very difficult when she has so much to do.  With all the replacement bus services en route, she is not even able to do her work while travelling.  She tells me she hopes to come down later on this week and having made the decision, she already sounds a lot less stressed which is really pleasing to us.

The nurse came today promptly at 9.00 a.m. which is really useful as the rest of the morning is my own.  Mark plans to come with the chemo at about 2.00 p.m. but as it is the shorter treatment he may have to go to another client first.  I decided to make some red cabbage this morning which can be frozen in foil dishes to go with the meals we have already cooked.  The preparation time is quite brief although it takes some time to cook at the bottom of the AGA.  We’ll have some on Sunday to go with the game Jonathan loves.

I decided that as the chemo is quite tiring and I’d like to wait for Jonathan’s arrival before going to bed, I would take it easy for the rest of the morning, particularly as I didn’t sleep well last night.  It is so difficult to do, because I have always filled my days and enjoyed being busy.  Luckily I have no other cooking to do today as I had already prepared a large lasagne and dessert which I froze the other day.  It means that Jonathan can have something to eat after his journey as he probably won’t get here much before 9.30 p.m.  I do appreciate the time he gives to us.

The chemo is still an unknown quantity and despite having had it before, since blood counts vary from day to day, I never know what my reaction will be.  Last time it was overwhelming tiredness and I rather think that this is a cumulative effect and I must be prepared for it.

A day to treasure

If we are not careful, a medical appointment or important phone call cuts into every day and we have no real time to ourselves.  We decided last week to keep today entirely free and it worked.  We were also lucky that out of the week so far, we had far and away the best weather.  Not only was it bright and sunny which lasted all day, but the sun was warm and for once I did not feel cold when walking around.

We decided on a drive to the New Forest and although there were few signs of spring, the sun pierced the gloom of the trees highlighting the intense green of the lichen-covered tree trunks and the whiteness of the birches.  There has been much rain of late so there were numerous pools and reflections which gave light and interest to the landscape.

We aimed first of all for Lymington and had morning coffee.  My usual foray around the shops was limited as I didn’t need to buy anything and I can’t walk very far. From the town we took the road to Beaulieu which gave us a real variety of scenery for our drive, with heathland, pools, small plantations of firs and, of course, the wonderful variety of hardwoods. We passed Hatchett’s Pond and drove into Beaulieu village.  We decided to have lunch at the Montague Arms Hotel which proved to be a good choice.  In the past we have gone into the bar/restaurant but today we chose the main restaurant which was very pretty and quiet. 

We both selected from the lunch menu, the saffron linguine with wild mushrooms and spinach parcels.  The pasta was obviously freshly made and really soaked up the creamy sauce.  We followed this with a refreshing lemon posset and I have to say it was a delightful lunch.  We both felt so relaxed in peaceful surroundings.  As our table was by the window we overlooked the garden.  At first sight we were conscious that as it is not yet spring, the plants were still in winter mode but as we looked more closely it was possible to see the mahonia blooming and the forsythia just beginning to flower.

We had a little look around the village High Street but it is a little worrying that at least three of the specialist shops had closed; I suppose this is replicated across the country and it’s such a pity.  We drove to Buckler’s Hard where we had coffee but the bar at the Master Builder’s is rather rough and ready but this was the only disappointment of the day.

During the main part of the day, although I didn’t feel particularly strong physically, I was much more energised mentally than yesterday.  However, neither of us had slept well the night before so we made our journey home before we grew too tired and before the traffic caused problems.  Tomorrow will be a busier day and I shall have chemo so today was a day just for us, a day to treasure.

Higher blood counts

I had intended to rest for the whole of yesterday afternoon and I’m not sure where some of the time disappeared to.  I did have some time to read which was restful but I knew that we had a tiler coming round to view the bathrooms.  He had picked up his wife from work so while he and Ray were discussing bathrooms I made conversation with his wife whom I had never met before.  She was a nice woman but I am not really up to making polite conversation at the moment.  Consequently, I was very tired and had to go to bed early.  In fact, my concentration was so poor I couldn’t read for long.

Today we went to the hospital early so that my blood could be taken and the results could appear on screen in time for my consultation.  I wore my new wig and it has received quite a few compliments, or at least people say I look better they don’t actually comment on the wig.  I was overwhelmingly tired as we haven’t been sleeping so we went to the Macmillan Centre which is comfortable and quiet.

When we saw Dr M. he had my blood counts on the screen and they had all improved.  He has decided rather than go for the stronger chemo this week which might send them down again, he will go for the weaker chemo again.  He feels it has already had a very slight beneficial effect on the mass in my neck and it could allow the improvements in my blood count to consolidate so I will be stronger by the time we do go for the other chemotherapy.  Being closely monitored allows these more subtle decisions to be made and I am grateful for it.  At the moment I feel it is as much an art as a science deciding upon the drug regime to control the lymphoma and balance this with my blood count and overall wellbeing.

As we hadn’t bothered about lunch at the hospital, when we arrived home we were tired and hungry.  We ended up having a meal at about 3.45 p.m. which was a little odd for lunch.  I don’t think I could have eaten before as I was too tired to brave the hospital canteen and I am always on edge before seeing Dr M and finding out the latest results.

Hopefully we can relax for the rest of the day.

Seeing old friends

It was good to see Margaret H. yesterday afternoon.  She is about my own age and manages to stimulate and relax me at the same time.  We had a good chat and she updated me with what is happening in the village but we were also able to talk more seriously about what is happening to me too and she is very helpful.  She stayed about two hours while Raymond was out.

I slept poorly last night and did some reading which stopped me from feeling too stressed or that I was going through the same old thoughts and ideas whilst getting nowhere – always worse at night.  Anna’s course at Exeter seems to be going well and her students are appreciative but I think the journey back to Wrexham was long and tiring.  She is having to work very hard at the moment.

Today has been lovely as Jola and Paddy visited arriving about 11.00 a.m., leaving just before 3.00 a.m.  We had an easy lunch and did lots of catching up as Jola is a friend from way back, student days in fact.    We thoroughly enjoyed the visit but I think I was just beginning to get tired when they left.  I think they timed it very well.

I shall try to have a rest this afternoon; I’d love to have the art of napping which Raymond has.  I don’t mean I have never fallen asleep during the day; I occasionally do in the early evening if the television is on, but I just can’t deliberately decide to have a nap.  I shall probably read and as we have eaten well at lunchtime, neither of us will be cooking this evening.  We have a tiler coming to look at the bathroom floors this evening.  I shall leave that in Raymond’s capable hands but I hope the job can be commenced soon.

Dr M, my oncologist, telephoned this morning to see how I had fared after the last chemo.  As it was quite mild, I don’t think I had any ill effects except extreme tiredness and I think in the last twenty four hours there has been a very slight improvement in my neck, but only very slight, nothing major.  We shall see him tomorrow when he will decide upon the next course of action, but he sounded quite cheerful.

Monday morning

It was nice on Saturday after our jobs to go to Wickham, one of our favourite local villages, where we had a sandwich lunch with chips in a pub on the Square.  The sandwiches were really full and Jonathan benefited from my last one.  We then called in to see an old friend but by this time I was nearly out of my mind with tiredness.  Ray was just about to nod off to sleep leaving Jonathan and me to carry the conversation, when I gave him a slight kick.  Jonathan noticed how tired I was and insisted we came home.  It didn’t take me long to recover so I lay on the sofa and we watched some DVDs.

This morning the nurse came to do my dressing; it is a slow process healing but apparently it has not been made worse by the chemotherapy as sometimes happens.  I am very tired today and finding it difficult to climb the stairs.  After that we did a letter to the solicitor about Ray’s case; I don’t think I can really do much more on that now.  Then my GP came to talk about the situation.  We needed to know who we ring out of hours if I am taken ill and she has promised to contact the out of hours service with an up-date on me and a notice that I am a priority case which gives us some reassurance.

We then had to decide about resuscitation.  I am quite prepared to go into hospital to have procedures such as blood transfusions or platelets but not intensive care so I have to fill in a form about my wishes.  Apparently we have to keep a copy in the fridge if an ambulance is called and no family members are here who know what my wishes are.

It is all rather serious and over the past few weeks it has meant issues such as this, together with all the practical arrangements have had to be discussed.  Frankly I now have had enough of this and want to put this behind me.  If you are not careful there is no end to the practical arrangements which can be made and whilst they are distracting, at some point distraction is wrong in that we should really be looking at what this period of time really means.

I am getting too tired for lots of visitors.  The visitors I am having this week I have known for many years and it will be good to see them and they won’t wear me out.  I find even catering for a weekend is tiring.  I don’t want family coming and then having to spend a lot of time in the kitchen so I do some cooking in advance but it is not as easy as it used to be.  Neither do I want a lot of cooking done for me after which the kitchen looks as if it has been blitzed.  I just want the house to run itself in an orderly way so I can have a more quiet, restful time.

A mainly relaxing weekend

On Friday afternoon I had chemo.  I alternate between a longer, higher strength chemo and a slightly weaker one.  We didn’t get started until quite late in the afternoon and it took three goes to get the cannula in as my veins are in a bad state particularly after the way they were used when I was in intensive care.  I still have some spectacular bruises.

Fortunately, Mark was the nurse who administered the drugs and he is very good.  His presence gives me confidence.  In fact, it didn’t take very long and I have felt tired but not unwell.  That same evening Jonathan arrived so I had something to look forward to.

Fortunately, I had done some cooking the day before so that when he arrived I could put a meal in the oven for him.  He is so good natured about coming down by train although at the end of a busy working week, he must be tired.  We had a wonderfully relaxing weekend.  I say relaxing, but on Saturday morning we had some visits to make and the relaxation came on Saturday afternoon, evening and this morning.

We went to choose some tiles for two of the bathrooms.  Now Ray has to get hold of a tiler who, hopefully, can tile the floors reasonably promptly.  Both bathrooms are quite small but there are some awkward cuts to be made in the tiles as the suite is already in situ.  Next we went to Makro.  Although I knew exactly what I wanted to buy, there is always temptation in the food department and I never seem to escape without paying quite a bit.  However, as I wanted bed linen and towels I thought I had found some good quality ones for which I did not pay the earth.

Afterwards I went to collect my new wig.  As I am no longer teaching I didn’t feel compelled to have it in exactly the same style as usual.  It is short but a little more spiky and fairer than my hair grew back this time.  My hair has been falling out this week which is not very comfortable so it was very timely.  Ray likes it and my mother says it suits me and doesn’t look too wig-like.

Today I really tackled the linen cupboard with the idea that if I am ill at home, it is easy to find everything and hopefully also easy to keep things up together.  Once more the charity shop is benefiting from my constant clearouts.  Raymond is always asking me if I have some spare rags as if I just open a wardrobe door and lo and behold there they are.  However, this gave me a chance to get rid of some old linen so he now has a really large bags for use on his jobs.

We’d had such a good time with Jonathan that I was really sad to see him go but so thrilled we had had time to spend together.  After taking him to the station we went over to pick up my mother whom I hadn’t seen for a little while.  We had a good talk, at least she talked and I wrote.  I am still not quite sure how much she knows about my condition and I am wary of telling her too much.  I think she can work out the limitations of the chemo herself but I don’t want to be depressing.  Altogether we have had a good weekend.

A serious talk

Yesterday was spent largely at the hospital having blood taken and seeing the oncologist for a serious talk.  All I can say is that we are walking on a knife-edge with the treatment.  The lymphoma is so fast growing chemo must be given but my body is desperately trying to recover so that my blood counts can be sufficient to ward off infection.

The hospital was very noisy and I don’t really like being surrounded by so many people with my zero immunity.  We managed to find an oasis of peace in the Macmillan centre where we could sit in comfort and quiet.

This morning I have been doing some cooking for the weekend.  I don’t really want to spend too long in the kitchen if Jonathan is coming down for the weekend as time spent with him is precious.  We have a couple of calls to make on Saturday as we are aiming to make our bedroom and en suite bathroom as convenient as possible if I am ill at home.  I should also like to see my mother.  I am not sure just how aware she is of my situation but obviously I couldn’t see her when I was in hospital nor last weekend as she was very tired.

One of the local nurses came quite early this morning to change my dressing which was good.  She thinks there is some improvement and certainly it is less painful.  I had asked the nurses to look at all the larger chicken pox scabs when I was in hospital but to no avail.  My GP also telephoned and plans to come and see me on Monday to catch up with my situation.  This leaves next Wednesday for another hospital and chemo again on Friday.

The danger in all this is that there will be no time for ourselves so I am hoping Thursday can remain completely free.  The problem is that I never know how well I will be but we’d like to go out for a drive. 

A good day seeing family

Yesterday was a good day and I think we really needed it.  My aunt and cousin came to see us from East Sussex.  First of all they went to see my mother and she didn’t know they were coming so it was a lovely surprise for her.  She was on very good form and they laughed and reminisced for at least one and a half hours.  As they know how deaf she is they had come armed with an A4 pad and pen which they left with her so she can go back over the conversation.

After seeing my mother they came to see us.  My cousin is a very good cook and runs her own catering business.  She took the trouble to bring us some meals to put in the freezer.  Although both Raymond and I cook, sometimes after we come back from hospital visits we don’t feel like cooking, and these will be most welcome.  Jonathan and Josie have also cooked for us and it is such a practical and welcome gesture.

We were also given a beautiful chocolate cake made with ground almonds which we were told we could freeze.  However, it is such a treat I am not sure whether it will see the inside of the freezer.  It is lovely to have tempting food which I know will help to build me up especially after the experience in hospital.

We always manage to pick up where we left off and there are so many areas of interest to talk about that the afternoon went by all too quickly.  I do hope we can see them again soon but it is not an easy journey through Sussex.  I am so pleased that Raymond gets on so well with them too and they are obviously fond of him.

In the morning Raymond had managed to complete some paperwork which was hanging over us and I wrote some letters.  However, it was a day really when I did very little as we were looking forward to the visit.  Some days I try to do too much and by the afternoon I am really tired.  Yesterday, having saved my energy I could really enjoy the afternoon.

Last night I slept for a few hours as I was tired then awoke.  I couldn’t return to sleep initially and I listened to the nightingales.  Fortunately, having had a good day my wakefulness was not troubled by negative thoughts.  My sleep was rather chequered for the rest of the night but although today will be quite busy, I hope it will not prove to be too difficult.

Chemo this week

Everything went well at Exeter for Anna yesterday as she started teaching a new module.  Unfortunately her journey back to North Wales was rather tortuous as there was flooding on the line and part of the journey had to be undertaken by bus, just what you want after a long day of lecturing.

My oncologist rang me today after I left a message yesterday and suggested I contact Health Care at Home to see if they can fit me in with chemotherapy this week.  The type of chemo drugs I shall be given will depend on my blood counts tomorrow.  The strength of the chemo will also be tailored to fit the results.

When I rang Health Care at Home I was able to thank them for the prompt action of their nurse who came to do my blood tests at home on January.  When she found out how ill I was she contacted the hospital and ensured I was admitted.  This turned out to be absolutely crucial.  They are able to carry out the chemo on Friday afternoon which means cancelling a friend’s visit, but I shall be able to have it administered by Mark who was so supportive when I had chemo in 2009.

This is turning out to be a very busy week and I am trying to cope with all the admin involved and keeping BUPA in the picture.  I am certainly lucky to be able to have the treatment at home and I am feeling a little more upbeat than I was during the previous couple of days.  When there are adverse changes I have to come to terms with them.

This means I have to be very aware of changes in my body and react immediately.  In addition, I have to be aware of the fact that the results of all the chemo are unpredictable as to whether they will be successful in reducing the lymphoma as well as the side effects on my body.  I have to accept that time is not on my side but it is useless being miserable; it doesn’t help the outcome and is a complete waste of time as we have to make the most of every day.

My hair is beginning to fall out as I knew it would.  Knowing makes no difference at all even though this is the third time.  I have an appointment with a wig supplier on Friday morning but you can’t wear a wig all the time so fortunately, I have plenty of turbans and scarves.  It is just one more blow to one’s morale though.

It is almost four years since I was diagnosed and there have been so many ups and downs.  A long illness is difficult not only for the patient but the whole family.  I am grateful for all the support but sometimes I wake up and just wish we were free of it.  Not to be I’m afraid.

The troublesome neck

We had a quiet but enjoyable weekend with Jonathan visiting us.  We spent some time watching DVDs of 24 which were relaxing.  Jonathan remembered how I liked watching DVDs with Anna when I was ill before – something we could share which is not too brain taxing for me.

I still have some nasty sores left from the chicken pox/shingles and the nurse came today and dressed the area I was most concerned about.  Although I am over the illness a few places have been giving me trouble as, once I was out of intensive care, the nurses did not look at them.  Fortunately, now I seem to be under the local nursing care which may be important in the weeks to come.

I have passed a message to Dr M’s secretary that my neck is swelling again.  It raises all sorts of questions about whether further chemotherapy will be necessary, beneficial or possible, bearing in mind not only my blood counts prior to treatment, but the overwhelming effect chemo had previously on my blood counts after treatment.  This is rather worrying for both of us but we are seeing Dr M on Wednesday and he will have my up-to-date blood counts at the time of our meeting.

Whilst mostly the dates marked on my calendar for this week are connected with medical appointments, I am hoping to see my aunt and cousin from East Sussex tomorrow.  They plan to visit my mother as well which will give her much pleasure.  We are also going ahead with buying her a special hearing device to help her take part in conversations.

We are both thinking about Anna today as she starts to teach a new module at Exeter.  We are glad she has maintained her links with the university and we understand the course is over-subscribed and should be popular with the students.

More chemo needed?

I think I may need some more chemo as there is possibly some activity in my neck again.  It is hardly surprising as I was supposed to have 8 weekly chemos provided the blood counts were OK and I have only had one.  That single chemo had a really beneficial effect on the lymph nodes although a devastating effect on my blood counts.  A really very careful calculation has to be made as to what my body can bear.

I had a good sleep last night although I am lacking in energy today.  Jonathan arrived yesterday evening and it is so good to have him around.  I knew he wanted to go to a fishing shop while he was here so I suggested a trip out in the car.  I was in the back seat covered with a quilt and armed with lots of reading while Ray and Jonathan perused all the fishing gear.  It was nice for me to get out of the house on a trip which was not a medical necessity.

Ray and I cooked a gammon joint yesterday so we are just having a simple meal this evening.  I am trying to eat a little more to push up my weight but it is quite difficult.  I find I need particular things to tempt me and on our way back from Alresford Ray and Jonathan bought me some raspberries and clear honey.  I find I am hankering after fresh fruit and vegetables at the moment.

I hope I am going to have the energy to stay up for longer this evening, as I slept better last night.  Even if I am lying on the sofa at least I am part of what is going on.  If I go to bed too early the nights are rather long.

Somehow we seem to be creating more washing than usual.  Normally I would be bustling around just keeping things in order but now I must calculate each trip upstairs.  In the mornings I can go up and down unaided but I need a little help in the evenings and I can’t carry anything.

It has been a dully rainy day outside but so good to have Jonathan here.  He and Raymond can talk about fishing till the cows come home but I am so thrilled they have such a rapport.

Journeys still to make

I was not sure what to expect before two nurses arrived this morning.  They are both connected with community nursing although based in two different areas.  We have encountered so much talking and no action we were both feeling a little cynical.  However, we found them to be very practical and they understood that we want to put in place plans in case I become ill again, particularly out of hours.  Prior knowledge of my situation will enable us to access care much more easily.

We are also trying to get back to some normality in our home.  Whilst I was in hospital, so many things were put on hold and it is good to have the house more organized again and Raymond is trying to deal with the post which had to be ignored for a while.  I have been really uplifted by replies to my blog, telephone calls and messages from family, friends and people in our village.  I am only just getting round to catching up so I apologise for not acknowledging before just how important all the prayers, messages and good wishes have been.  They helped to carry not only me but our whole family through the last two or three weeks.

Anna’s academic paper written jointly with a colleague has been accepted, yet another rung on the ladder.  Yesterday she was pleased to attend the inaugural lecture of her good friend and mentor at Chester.  We take such delight in seeing her blossoming in her chosen career.  It was lovely to talk in a relaxed way to her this morning and hear her chuckle; conversation over the past two or three weeks has been so difficult when half the time I have not been with it.

We are looking forward to this weekend with no medical appointments.  Jonathan is coming down to see us and despite the cold winds outside, the curtains will be drawn, candles lit and we shall relax together.  So much has changed in the last few days.  I know I walk on a knife-edge and my situation can change in a matter of hours if not minutes, but I am a little stronger.  Knowing that I shall be closely monitored helps me to be less paranoid.  I shall have lots of questions about future treatment when I see the oncologist on Wednesday, but I think we are facing the unknown and there can be no definitive plan but rather we must react to how the lymphoma behaves.

I suppose what I am really looking forward to is less drama and a little more normality.  Now I can go up and down the stairs by myself Raymond can go out without worrying about the possibility of my falling.  Even though I can’t really venture into the garden I can watch and listen to the birds and all the other creatures going about their daily lives and Ray can walk by the shore to watch the ships.  There are still so many journeys to make.

Dealing with the solicitors

Tuesday and in the night the fog horns sounded quietly out to sea.  I woke up a couple of times but there is no anxiety now, just a quick check in case there are any new spots as I have no immunity against the virus which seems so innocuous.

Yesterday was difficult for Raymond as once again the solicitor was asking for revisions.  His office were also worried lest he might be a carrier of chicken pox!  The latter illness is something very many transplant patients do have again because we have a new DNA and immune system (in my case a lack of one) but Raymond is not a walking time-bomb!  When I think of how I have risked my life going to their office with zero immunity to sign papers I was not amused at their attitude to Raymond.

Raymond has been convinced that not only the solicitor is reading the statements, but also the barrister and Ray keeps being asked to make unnecessary changes or put in items which are already there.  He was so incensed he got up in the night although he had a meeting with the solicitor today.  I couldn’t sleep either as I was annoyed that they were so amateurish.  I got up and fired off an email from me about their editing skills!

If more than one person is editing a document the title and date of all subsequent drafts should be agreed.

If it is uncertain whether one of the parties holds a fully computerised record of all previous changes, a copy of the document under consideration should be available for consultation.

The name of the person suggesting the changes, together with the date should be clearly visible.

If further changes are suggested by an additional editor[AD1] , these should be dated and shown in a different colour.

If a further editor makes suggestions, it would save time to check whether he or she is flagging up points as they read or whether these points already exist within the existing document.  These checks will ensure unnecessary changes are made as well as avoiding interruptions to the flow of the document and unnecessary number changes.

I am pleased to say the meeting went well!  All these firms earn their money by postponing settlement/trial dates but I don’t think they will be making Ray do much more of their work!  I have got it all out of my system and hopefully can concentrate on making progress.

---

 [AD1]To the document under consideration

Gradually growing stronger at home

Over the weekend the house was full.  It was Josie’s birthday and Jonathan cooked a lovely meal for us all.  Although on the Sunday Anna had to work on her paper, she spent a lot of time with me on the Saturday and I was glad she could spend some time with Dave after a highly emotional and hard-working fortnight. 

I have to say I was happy to be at home but exhausted.  Ray was running a course so I needed a lot of help from everyone else in getting up and down stairs.  I have always helped the courses to run smoothly and see to the props and dresses.  Normally these would have been washed and put away on Sunday ready for the next one, but we are only gradually going through the tidying up process now.  Ray was very tired because of running the course so soon after getting me home.

Yesterday I went back to the hospital for the first time since leaving so suddenly.  I had my blood tested and then went to use the pentamidine which helps keep up my immunity.  Even before I came out, one of the nurses who was kind to me on the ward had the results of my blood counts.  She had spoken to Dr M who said they were all fine.  Although I know they can go up and down with great rapidity, this was a real vindication of our actions and there was no need for me to stay for a blood transfusion or platelets as we thought we might.

Today we managed to arrange some banking and Ray went to the farm shop as I have been craving fresh fruit and vegetables.  We have had a lot of lovely messages and telephone calls from friends and family.  I feel a bit mean in not being able to talk to everyone but those really close to us know that visits will have to be short until I regain my strength.

Over the weekend Jonathan and Josie went to see my mother.  She was on very good form and was so pleased to see her.  She had been low in the morning which is not like her but was relieved to have a letter from me outlining what had been happening.  I think the family were wise not to try to see her whilst I was in hospital as it would have only made her feel even more unhappy, as she would not have been able to do anything.

The oncologist rang today to reassure me that I could ring him at any time if circumstances changed, but he confirmed I was making progress and that he and the team were thrilled that the lymphoma had reacted so positively to the particular form of chemotherapy I had been prescribed.  I know it will return but it does mean there is still a useful drug in the arsenal.  I am very tired but hope to make one or two phone calls before the evening is out.