Grit your teeth

The ghastly stitches have now gone and so have the nose plugs. When the consultant said, “Grit your teeth,” I knew it was not going to be easy. Then he proceeded to hoover my nose which is an unusual and fairly unpleasant experience. Ray had been invited into the consulting room and although I was behind a screen, I think it all made him feel very queasy.

However, one of the things I learned was that the operation had taken two and a half hours which explains why I felt so ill after the anaesthetic. They took pictures of each of the sinuses as they were opened up, not something you want to put on your wall but at least I could then see the necessity for the procedure.

I do have to follow up the operation with lots of daily saline sinus washes which is a bore but I cannot afford to waste all the good done by the operation by not following it all up properly to keep infection at bay. That is going to be so important over the next few months.

What I have felt is that when seeing this consultant, not only are we treated properly and seen on time, but he has all along looked at the bigger picture of what I am going on to, i.e. the bone marrow transplant. Everything has been done in terms of action and timing with that in mind. It has given me more confidence especially after some less than perfect treatment before.

Starsky, too, is picking up and seems to be getting over his anaesthetic. He is eating more now and Anna will be home soon to look after him which is a relief. I am now planning for the days ahead and have received a schedule of procedures from the Royal Marsden. I am not looking forward to the insertion of the central line or the removal of a bone marrow core on Thursday. I feel I have had enough pain for this week.

However, at least now I do have a schedule to look at. The Journey into the Bubble has been long with many hurdles along the way but we could be getting there.

Staying in and going out

The stitches inside my nose come out later today along with the two trailing stitch tails across my nose. When I look a little more human again maybe I shall feel a little more upbeat. I still feel very sick but I am making myself eat as I need to keep up my energy. Last week I didn’t feel like tackling anything whereas today there is a lot more I feel I can do although I don’t intend going out until tomorrow!

Tomorrow also will take us out walking again. These times in the countryside, just the two of us, away from telephones and business are wonderful. Anna advised us to make a pact not to talk about business or my health or anything of that nature, but just to concentrate on positive things. That gives us a part of the day which nothing and nobody can destroy. These times together are very valuable as we are not looking forward to the weeks we are going to spend apart.

Whatever happens I am always finding something in this situation to worry about; I just wish I could be calm. Now I worry about the sickness; is it because of the radiotherapy on my intestines (I know sickness can last for some time after completion) or hasn’t the radiotherapy worked? In which case, has the lymphoma returned which might prevent my transplant going ahead? It would be wonderful to be objective and rational about all this but there are too many variables.

All this self-analysis I would have laughed at a few years ago, but now I know that my health depends not just on good medical treatment from the professionals, but from keeping a close watch on everything that happens myself. However, self-analysis can easily tip over into self obsession so I have to be aware of all the concerns of other members of my family. Today Anna sees someone about some possible work in the future and Jonathan is now entering his second week on his new programme. Similarly, there are other people who need my thoughts at the moment because of bereavement and severe illness so I must turn outward once again.

Once the stitches come out today, I can stop being confined to home and go out again. Once I can go out and mix with other people I shall start to feel more involved in their lives again and about time too!

Lifting myself up

Ray has gone fishing today. He is sometimes a little worried about leaving me on my own, particularly if Anna isn’t here. However, I am all right, just very lethargic and I do so much want him to have some time away from home in the countryside doing something he loves.

Twice a day now we are having to give the rabbit his antibiotic but he is just a little livelier although not really steady on his feet. Perhaps he is playing for sympathy. Normally he scampers around the conservatory but now he spends most of his time in his hutch. I know the feeling. I haven’t really wanted to go out much with the tail ends of the stitches stretched up my nose. It is not a good look but going out does offer some stimulus

Tomorrow evening the stitches are being removed and hopefully the rash from the plasters will have calmed down. I am desperately hoping that this will re-energise me as there is so much to be done. This week brings some events at the Marsden which are crucial to the bone marrow transplant and I know I have got to become fitter physically and regain some of my usual emotional energy. Having energy on a personal level is something I have always taken for granted and that is worse than all the physical symptoms. Hopefully when I stop feeling sick all the time this will help.

The next few days are really important and I must lift myself up by my bootlaces. One of my inspirations is my mother who at 96 gets up every day and dresses carefully, maintaining her colour co-ordination. This is not vanity, but she knows quite well what self-respect and normality do for one’s morale. Others have their own problems too. So many people I know are going through difficult times at the moment with the recession. We have several friends who have businesses of long standing who are now having to take on other jobs to survive. These are not people who have been reckless but nevertheless they have been caught out because people are just not spending money. Ray and I remember the recession in the 1990s; it’s different this time but still just as difficult. We came through that and, as a result, are stronger so we must summon all our strength now for a different battle – a battle for life itself.

Keeping spirits up

There’s a difficult week ahead and I’m feeling quite fragile with the side effects of the drugs post surgery. Both the rabbit and I are needing a little TLC after the general anaesthetic.

However, no matter how I feel there are good wishes coming through every day. Ray meets people in the village who ask after me and I received some beautiful flowers from a lovely lady who was on one of Ray’s courses. She and her husband had wanted to take us out to dinner but as her little daughter had been ill, I had to refuse. I have to keep to a very tight schedule now and can’t afford to be ill. Fortunately, she understood as I really don’t want to offend anyone.

Ray and I take pleasure in the fact that we can still run the business and we meet such great people. We even have a really good bank manager who seems to understand what Ray has been through with the accident and now caring for me. Mostly I have not only been able to take care of myself but play an active role in the business. However, now other people are having to step in. Actually since an important part of the course is the business element as well as the photography, Ray’s students can see that we can cope and can pass on some good advice since all people who run small businesses have to cope with difficulties in their private lives at some point.

What I am missing is singing. I sing, always have, and it’s given me such pleasure. I started out as a child in the church choir, took part as a soloist in operas at school, then later on as an adult in concerts, shows and operas. I gained my Licentiate in Music but decided not to pursue singing as a career partly because I think you have to be very single-minded and also more talented. However, I have never lost the thrill of floating a soprano sound over an orchestra even though now I am once more back to the church choir.

During both bouts of chemo in 2008 and 2009 my voice was affected and my larynx has been affected once again by my sinus problems. But the voice does come back. At first it takes a lot of work to produce the sound across the whole register and breath control is difficult. Then comes a day when the voice just floats out again. My son has a good baritone voice so perhaps my father, whoever he was, could sing. I am told he was musical and singing depends on one’s physiology which can be inherited as well as musicality. But to sing well requires spirit and joy to be alive. That spirit is difficult to suppress even during a drug regime so hopefully I shall sing again.

The best odds

When my daughter was at Exeter University she bought a little rabbit and when she moved to Cranfield University he went too. When she came back home to have a flat in our house in order to do her PhD, Starsky came to live here as well. He has a hutch in the utility room but the hutch is never locked so he has full run of the space and in finer weather moves outside during the day in his outside run. Sometimes he likes to come into the rest of the house and make himself comfortable; he has always had comfort as a strong priority.

On Wednesday though, he seemed off his food and morose. He had spent most of the day underneath his hutch, not something he has done before. But our daughter was in Amsterdam so we had to take action. Yesterday Ray took him to the vet who thinks the problem may lie with his teeth. Today Starsky is going to have a general anaesthetic so the vet can examine him properly and, if necessary, file his teeth.

Animals are so vulnerable and ultimately dependent on us so it was difficult seeing him being taken off for his operation. Most of us like to be independent and it is difficult to put your trust into the hands of professionals however expert or well-meaning. Our instincts for self-preservation are very strong.

Having choices about whom to trust is therefore very important but ultimately we need our wits about us. The old days of just trusting the professionals blindly have long gone. Many years ago there was a BBC programme “Your Life in Their Hands” which was meant to boost patient confidence. I think nowadays this title would be seen as slightly ironical. There are still marvellous doctors and vets and patients must still be prepared to gamble a little in order to achieve the best result but we would all like the odds to be the best we can get.

Another step

Every day now brings something which adds to my journey. Today Ray and I had our swine flu vaccinations. I know at the moment swine flu hasn’t materialised into the epidemic that the professionals thought might happen, but I was advised by the Marsden that we should have it done.

Since my blood pressure is always low, I spent yesterday in bed after the anaesthetic as I felt quite dizzy. This is a very abnormal occurrence for me as I get up regardless of how I feel but falling over, especially downstairs, might not be a good thing at the moment. I am trying to keep as safe and germ-free as I can at the moment so that nothing is delayed.

Ray has been so good looking after me. When we were younger I could just never envisage being ill at this age. I knew I wasn’t as strong as my mother but I could never have imagined being overtaken with this. There isn’t much time now before I go into hospital so we know we must make the most of every day.

Whilst I was at the doctor’s surgery I made an appointment to see my GP in order to have my DNA taken. The receptionist looked totally bewildered and I tried to explain that my DNA was about to change because of the transplant and my doctor (knowing about my donor conception) was aware as to why I would want my original DNA recorded.

Maybe at some time in the future if I get through this, there may be an opportunity to see if I match a potential half-sibling or there may be advances which enable females to find out their paternal DNA. Whilst I think we all wonder at the marvels of modern science, there is a real gap in the teaching of ethics and responsibilities in the development of science and the effects of scientific progress on all human beings whether living now or in the future.

Picking up speed

In 2006 Ray and I decided to join the health insurance, BUPA. Thank goodness we did. Although some people have said to me that it has made no difference to people they knew, for me the converse is true. I have had some excellent NHS treatment, notably from my GP surgery, but I have also had some terrible experiences.

Initially being able to call on BUPA to authorise seeing a consultant led to my diagnosis of lymphoma earlier than otherwise. Secondly, I was able to have chemotherapy at home and I knew I would have access to drugs not always available on the NHS. Of course this isn’t fair; the drugs should be available to all. However, people have different priorities and we made a decision about making insurance subscriptions which meant doing without things in other areas of our lives but I am aware that some people have no choice at all.

The crunch came when I needed ENT treatment. This had been highlighted by the bone marrow team in Southampton but not acted upon and the delays meant that if I had gone down the NHS route I would only just have seen a consultant in the last few days. This would have meant postponement of my bone marrow transplant and the danger in this is that mantle cell lymphoma grows back so that the transplant could have been doomed from the outset.

As it is, BUPA authorised me to see the consultant, have an appropriate scan, pre-assessment tests and my sinus operation yesterday. This just fits into the schedule for the transplant and I am so grateful that everyone pulled together to enable this to be done. I knew already that the consultant was very experienced and capable but successful outcomes also depend very much upon the hospitals and their staff as I know to my cost, having had two previous bouts of MRSA. I was impressed by the pre-operative tests which were very thorough. In hospital I was very well looked after and staff asked all the right questions to prevent anything going wrong. They all seemed aware about the transplant ahead and I felt buoyed by their quiet encouragement.

So I’m home and another hurdle has been jumped. The journey is picking up speed at last which is positive but also daunting.