Monday, 31 May 2010

Hoping the transplant is working

The holiday weekend weather wasn’t too bad. It wasn’t nearly as warm as the previous weekend but it remained largely dry. We went for a couple of walks. One was in the Victoria Country Park which was fine going one way but on the return we took a path amongst the trees as the wind blowing off Southampton Water was rather cold.

I am not supposed to do any gardening because of the potential for fungal infections. This is very frustrating as although Raymond mows the lawns, weeding is not his forte. I had to stand outside this morning and supervise whilst he got rid of some of the bindweed which afflicts this garden. We were both amazed how every single flower head had been very carefully eaten off the carnations which he had recently put in. The deer seem particularly partial to red flowers but they mainly devour plants in the rear garden, not a flowerbed right underneath the window to our sitting room. They are so bold at this time of year.

The imminent PET scan has been filling me with foreboding. I know that in the natural course of things, the lymphoma would be returning now but I am hoping against hope that this new bone marrow transplant is actually working. I find it very difficult to concentrate on other matters when I feel I don’t know what is going on. I wish I could feel more confident that my body will be able to fight off this scourge.

Friday, 28 May 2010

Wild life

Our garden has been full of wild life. This morning a vixen and her little cub were playing on the back lawn from around 9.00 a.m. Yesterday the smaller of the two stags visited the back garden and earlier the doe came with one fawn. We are left wondering whether this is just one doe with one fawn or whether there are two does, one of which has two fawns. At all events they find plenty to eat in the flower beds and not usually the weeds. Ray has taken photographs but they are on film. This is where my little digital camera, although good, doesn’t come up to scratch.

I have just sent an email to the two visitors from Slovakia who attended Ray’s course at the weekend. Unfortunately, both Ray and I didn’t know much about Slovakia which probably seems pretty ignorant. Anyway they obviously forgave us because they sent a parcel containing some really magnificent books which I have been reading since they arrived earlier today. I can’t quite get over how quickly they were delivered, just a day since posting. As they are returning in July on an Advanced Portraiture Course, we shall be able to thank them properly and hopefully demonstrate that we are a little less ignorant than before.

This morning I needed to have a new screw put into my glasses which are quite new. While we were at the opticians I managed to persuade Ray to get some new glasses. He has been putting it off for ages and it will be good to see him in something more modern. He tends to spend money on the boat but to think twice about spending on himself.

Wednesday, 26 May 2010

Visit to Hospital

Yesterday was my hospital visit. It perhaps seems extraordinary to record the minutiae of life for a blog but it started out as a means of expression but some aspects of it are useful for communication.

My appointment was a little later in the afternoon than usual so we expected to get caught in the rush hour although I didn’t need anything from the pharmacy which saved over an hour’s wait. Most of my blood counts were good except the haemoglobin which was low. I narrowly avoided a transfusion which would have meant coming back for another whole day. My blood group is changing from A positive to my donor’s group which is O positive and this change takes place between three to six months after the transplant.

I had extra blood tests taken to look at my levels of vitamins and folic acid. The nurse who did the tests explained that most transplant patients found eating difficult. This was because of feeling full or nauseous, lack of saliva and change in taste. I find I am never hungry and the little saliva I have is very thick so a lot of food seems very dry. Certainly my taste has changed and I find it difficult now to drink tea which formerly I really enjoyed. So I am not surprised at what the blood tests reveal but I am not sure what I can do about it. I certainly don’t want to lose any more weight; I was happy to lose the weight I put on in hospital because of fluid retention but now I would be happy to stay where I am. I may have to have vitamin supplements but I would like to sort out my appetite as it is hurtful when a meal is cooked for you and you can only eat a few mouthfuls.

I am impressed that everything is so closely monitored and I don’t think I would have had this level of involvement anywhere else.

Tuesday, 25 May 2010

Trying not to be judgmental

I recently received an email out of the blue from someone who has been researching the attitudes of donor conceived adults as she is planning to go down the route of having a baby by donor conception. I think she must have been directed towards my blog as it is a link to other blogs on donor conception.

In the part of the world where she lives I think this is still done anonymously. I think the bitterness of many adults who have discovered they were donor conceived has shocked her and the emphasis on the outcome for the child rather than the very real desires of the infertile couple.

Knowing how natural it is to want your own child it is difficult to be harsh and judgmental but she seemed very dismissive of the importance of the genetic link between the child and his/her biological parent. I think she has already made up her own mind on the subject despite her assertion that she has been doing all this research. I am certainly glad that medical science has come up with many ways of helping infertile couples and it is natural to concentrate on the couple who are suffering rather than the child who is the outcome but in the case of donor conception I do hope that these days there is a little more balance in thinking about what is the best course of action.

I am just off to the Marsden for routine checks.

Monday, 24 May 2010

New life

Ray’s course went well and the flights to and from Belfast and Slovakia were unaffected by volcanic ash and strikes so the course participants were able to travel reasonably easily. The warm weather proved a blessing to the models who are usually expected to shiver in the cold for most of the year.

The longer days and warmer weather have brought the deer to our garden one again. During recent summers one or more sleeps on the lawn and even if they go before we are up we can see the shape of where they have been on the otherwise dewy grass. Over the weekend a young stag has spent quite a lot of time in our back garden but then on Saturday we had a visit from a doe with her very young fawn. The fawn was one of the youngest I have seen and they were only a few feet away from me on the patio.

During the night the young stag slept on the back lawn under the apple tree but by early morning he was ready to leave. However, he was quickly replaced by the doe who this time brought along two fawns. They had a thoroughly good time racing to and fro across the garden. They prefer the cut grass of the lawn to the rougher grass at the bottom which hasn’t yet been strimmed because of the masses of primroses.

Each summer we have the pleasure of seeing the foxes and deer with their young but it never fails to impress. It is such a promise of new life which, in my limbo state, is inspiring.

Thursday, 20 May 2010

Feeling listless

We have arranged to change our internet provider which I hope will mean there is some consistency in the wi fi. After several days without a signal, I actually had one this morning and it makes us realize how much we rely on the internet. So today I haven’t got to resort to going to the local library.

Ray is running a course this weekend which means a lot of running around. Our main phone line wasn’t working this morning and as we have people flying in from Ireland and Slovakia we had to have the calls transferred to Raymond’s mobile. When things don’t work it is all such a chore.

Although I had a good report from the hospital on Monday, I have been feeling very sick since then. I’ve even had to go back on the anti-nausea medication which feels like a step backwards. I feel very quiet and listless and this is difficult to shake off. I seem to be on a plateau at the moment physically although being able to read again is wonderful.

It is frustrating not being able to do very much when Ray is busy. I’d like to be of more help. I am not a very patient patient but it seems to take a long time to get over this. I am also a little nervous about the scan next month as I so want this to have all been worth it.

Tuesday, 18 May 2010

In the library

Our internet has been unreliable since we switched providers but in the last few days it has not been working at all. Hence I am in the local library. As it may take some time to switch back to BT I could be in here quite often.

Yesterday I went to the Marsden. Whilst waiting I met someone who was on the ward at the same time as I was. In fact he switched to my room after I left. It was interesting to compare notes. Like me he has been weak and lacking concentration. However, we both found we have improved in the last two weeks and are able to read at last. This has been a real source of difficulty for me.

The appointment with the doctor went well and it has been arranged that I shakll have my hickman line removed next month. I shall also have a CT scan to determine whether there is any mantle cell lymphoma still lurking. This gives me something else to worry about but I don't think anything really reassures you completely once you have had cancer/lymphoma.

I am now sleeping better and don't have the weird dreams I had in hospital and when I first came out. It is wonderful to be able to read again; I hated not having the concentration for even the newspaper. I am still sticking to light fiction at the moment but this is a start.

At the weekend Raymond took a chair outside for me so I could supervise him putting in the plants in our back garden. It has been sadly neglected for some time but we have made a start which cheers me. A little stag, perhaps one of last year's fawns, has taken to sleeping on our back lawn under the apple tree so we must be doing something right. It is great to see him return.

Tuesday, 11 May 2010

Beauty on the doorstep

Sometimes we overlook the beauties just on our doorstep. We are lucky our garden at the bottom runs into woodland and every morning when I draw the curtains I see all the trees. However, since the children have been adult I haven’t done much walking in the woods themselves. The walking circuit we used to do every morning before my transplant is on the other side of the village and is too demanding. This morning I just walked down to the bottom of my own road which goes through the woods and returned.

Once this road was the main road from our village to the next but as it looped around, in the interests of efficiency another road was driven through to cut off the loop and our road became a cul de sac. A barrier prevents cars going much beyond the houses so gradually nature has reclaimed the sides of the road. It is still possible to see the cat’s eyes but it has become nothing more than a single track under a wonderful canopy of trees. A few dog walkers use the woods but otherwise they are remarkably free from human activity and the bird song is heavenly.

It’s actually quite a good beginner’s walk for me as it is a gradual climb on the way back and as there is so much to see it isn’t particularly difficult. In addition, as it’s right on the doorstep I can do it on my own although so far I’ve been with either Anna or Raymond. Probably after a couple of weeks I shall have to move on to another challenge but for the moment the beautiful walk on the doorstep is just enough.

Monday, 10 May 2010

The eyebrows are back!

It has been a strange weekend without Raymond. Fortunately, Anna has been here but I haven’t wanted to monopolise her time as Dave has also been spending the weekend here. Raymond has been in France checking up on the boat but returned yesterday evening and I have certainly missed him.

As I’m not supposed to do much around the house it does leave me with very little to do. Anna is helping me try to think of some new projects but it is difficult until my concentration improves. I am able to read a little, certainly a little more than even a fortnight ago, but it is limited to newspapers and light fiction at the moment. I can’t help feeling it is all inextricably linked with physical progress. Anna took me for a short walk this morning which seemed a good time as later on in the day, either I am tired or other conflicting tasks crop up. One thing to have happened in the last fortnight is that my eyebrows are back. This is a vast improvement and makes me seem more human. It's just a pity that there is no movement on the rest of my hair.

Raymond seems to be happy about what he achieved on the boat and several people we know have been asking if I can go to France. If we stay with Peter and Sarah in their gite and don’t go to restaurants, I can’t really see that there is a problem. I could still go out in the car and for some walks. I wouldn’t be able to get health insurance and would have to rely on my E111 but we can travel back to the UK very easily from Carentan so I think I am going to be persuaded to go when my Hickman line is removed.

Friday, 7 May 2010

Lacking energy

Today is a busy day for Raymond. He has to go to France for a couple of days to check on the boat so there is a lot of last minute rushing around to do. Anna is home so I shall not be on my own.

Yesterday we went to the Royal Marsden Hospital. The journey up was good and I was actually seen for having my line flushed and blood tests in good time. This was followed promptly by my appointment with the doctor very soon afterwards. The waiting around is for the pharmacy. Unfortunately, they are under a lot of pressure as they provide the chemotherapy drugs and other essentials for the in-patients as well as dealing with the very many out-patients.

When I saw the doctor I was able to report that I had been feeling well. I still lack energy and I probably need to do my walking on a more regular basis like we used to but that means getting up early. For the first time we started talking about the removal of my central (Hickman) line and this will probably be in mid June. I did raise my other concern which is my hair but it looks as if that doesn’t start growing for three months after the transplant but when it does that will make a huge difference to how I feel.

I think the journey was very tiring for Raymond but eventually we got home. We then hand to round up Anna to go to the polling booth. As we went in the early evening it was really quite busy. Despite our best endeavours we couldn’t stay up until the early hours waiting for the results but the exit poll proved to be extraordinarily accurate.