Salad Days

Yesterday was the day of my fortnightly trip to the Marsden. The Waiting Room was packed with lots of people standing but by now I know most of them by sight. Bob and Julia were there and Bob, like me, was having his stitches out. Now at last I can have a bath or shower without a plastic bag over all the lines.

The removal of the line means that it takes about 5 minutes for them to draw the blood samples for testing instead of the 25 minutes previously where the line had to be flushed and the site of entry cleaned and dressed. I was lucky enough to be seen quickly and the consultant, Dr Mike Potter, seemed to be pleased with my progress. I did tell him I had been ill during the week but was fully recovered and he thought I had had a bug as, of course, I am more susceptible to anything going around.

He said again that he does not want to prescribe steroids for the GVHD as at the moment this is boding well for my long term future. He did raise the possibility of another PET scan in a couple of months as I guess they want to make sure that the activity in the throat was an infection and not the return of lymphoma. There is always a shadow hovering somewhere.

The doctor also asked if I had any holiday plans as I should consider getting away while the weather was good. He said anywhere in England was all right and also France. I jumped at this right away. He explained that Northern France was ideal as it was possible to get back to the UK quickly if anything flared up but also that the Franch health system was very good and everything should be covered by the E111. This was all very encouraging as I have already mentioned to Raymond that I would love to get away and I know he’d like me to go to France with him.

I had some more good news too. I can now eat raw fruit and vegetables provided everything is washed well, peeled where appropriate and all pieces are completely fresh and not too ripe. This is wonderful news and I am celebrating tonight with a salad. As I still suffer from a dry mouth at last I can eat the food that is moist and also good for us both.

Hair

Yesterday we saw Anna off to Oxford. She and I had been out together during the previous week as she was buying clothes for her more professional role. She really did look so striking with her hair up. She is lucky to have a perfect oval hairline so an upswept hairdo doesn’t look too severe.

I have decided to do without turbans and scarves now and it really gives me a great sense of freedom. My hair is still very, very short but since more people have chemotherapy nowadays the general public have become far more used to realizing why someone is wearing a turban or has very short hair.

Last time I had chemotherapy my hair grew back with its natural colour. This time it has been very strange. First of all I gained eyebrows but they were very dark. Gradually these lightened in colour quite without my noticing it until Anna and Raymond remarked on them. On my head I had a very dark short fringe at the front and slightly lighter stubble elsewhere. Since removing my turban I have been able to watch this change also. Basically the hair grows back just like a baby’s and their hair colour often changes as it grows but it surprised me that instead of the roots changing it was right along the hair shaft which is quite uncanny.

When discussing cancer or lymphoma the subject of hair must seem so trivial but regrowth is a real sign of recovery. Lack of hair is really quite humiliating and you can never escape your illness. I can now put my scarves and turbans in the back of the cupboard. I hope and hope I shall not need them again but the more I read about cancer the more I realize that it is not always the immediate death sentence it once was, but more of a chronic affliction.

Progress

Yesterday afternoon and evening I was unwell. I had a severe stomach upset and couldn’t eat. Today I am better so I think it was a ‘one-off’ event but Raymond was very worried as we both know that Graft Versus Host Disease can get worse very quickly. Today as I feel normal it makes me realize just how ill I was when I first came out of hospital as that was a daily occurrence and I have made so much progress since then.

Those stomach upsets did cause me to lose a lot of weight, not only what I gained in hospital because of the fluid intake via the drips, but an additional stone. Anna was sorting out some clothes for the charity shop and gave me a skirt she no longer wears which was too good to dispose of. She is shorter than I am and it fitted on the hips but is too large on the waist so that was a warning. I’d like to get back to about 8 stone as I need all the strength I can muster to cope with the months to come.

I went to bed early yesterday but couldn’t help noticing the fox cubs on the lawn at dusk. There were three of them rolling around and play-fighting, such a wonderful sight.

I’m certainly glad I am better today as Raymond really needs to concentrate on preparing for the course. I usually do some work in the background as far as refreshments and preparing the wedding dresses and flowers for the wedding element on the Saturday. However, we have been doing it so long it usually goes like clockwork.

Anna is running a summer school for Continuing Education at Oxford University next week so she, too, has been very busy. It is a slightly nerve-wracking time as people are flying in from the far flung and she feels a real sense of responsibility for its success. I know from her preparation that it will be and it is another addition to her CV.

Another milestone this month

Another milestone. My hair has grown enough for me to be able to go without a turban at home. This hot weather has meant it has been difficult sleeping with extra head covering so I am very pleased as it is another step towards normality. It is still a little too short to appear in public like this. When my hair grew back after my first bout of chemo three years ago, a similar thing happened. This time it has grown back darker than before but when my eyebrows grew back they were dark at first and then lightened without any help from me.

I have just interrupted my blog as Raymond has told me there is a stag in the garden. At this time of year they come in day and night. The other day I was sitting reading downstairs when I looked up and saw a fawn staring at me. Its mother and sibling were also on the patio immediately outside our window and didn’t seem the least concerned.

Today is very still and warm. Normally I would like to be sitting outside reading and even more normally in the past I would have been outside doing some gardening. It is frustrating watching all the weeds growing but Raymond can’t do everything. Today I am not even sitting outside reading either but I am summoning my strength to write a letter to Raymond’s solicitor about his accident. Raymond has put down the main points and has spent yet more hours doing calculations about the business losses. The legal team seem to work in fits and starts and then they demand a lot of answers from us which usually take considerable time often at inconvenient moments. I wish they would work a little more consistently especially as we are now in the fifth year since the accident.

This is the busy period of the month as Raymond has a course starting on Friday. He usually enjoys them and invariably the people attending are interesting so although it involves quite a bit of preparation it is rewarding.

Dry mouth

I have Grade 1 Graft versus Host Disease; this means it is relatively mild. Grade 4 can be fatal. When I read about the symptoms I noticed one was “dry mouth” which is what I have. On paper these words seem very mild and it is certainly not a painful condition. In certain circumstances it could be almost comical. I have no saliva so more than a few minutes without water or another drink means my mouth becomes impossibly dry and my lips curl back on my teeth which so that it is difficult to drink without spilling the liquid. I really must look a sight like that so my constant companion is a bottle of water.

The irony in all this is that we live in an area with lots of fruit farms and farm shops with pick-your-own strawberries. When you have a dry mouth you crave juicy foods such as strawberries, mangoes, melon and raspberries, all in abundance now it is summer. Unfortunately, I can’t eat any of those in their raw state. Post transplant patients have to avoid raw fruit and vegetables which in summer also means no salad.

No saliva means having meals with plenty of sauce. A sandwich is too dry and cake is impossible. It will be a long time before I have any nuts or crisps. I can live without the latter but fruit is something I really do miss. We have another problem if we are out all day at the Marsden as it is natural to go to the café for a sandwich for lunch but this is impossible so mostly I go without.

Dry mouth is an inconvenience but I am sure it will go away eventually but it is symptomatic of a lot of the problems which cancer patients have. We tend to focus on the main ones, quite naturally, particularly where they involve pain but most cancer patients you will encounter have a host of other problems. If you see someone with their lips curling back on their teeth it could be me or another post transplant patient.

The Hickman Line is out

The Hickman Line is out but it wanted to stay in. I was glad I had an extra two shots of local anaesthetic, the previous four not being sufficient in such a delicate area since the line had settled into the flesh and a lot of pulling and twisting were needed to remove it. I studied the ceiling tiles but 35 minutes later it was gone.

All this took place in the Minor Procedures Suite at the Marsden where I had previously had my bone marrow biopsy. Cancer is something of a closed world. We all know about chemotherapy as a treatment but before we enter this world either as a patient or partner/carer, we are unaware of all the other treatments and tests which the patients undergo. All around me behind closed blue curtains other cancer sufferers were stoically facing pretty unpleasant procedures.

Behind or alongside so many of us cancer patients are our partners who sit with us and wait in interminable waiting rooms trying to lift our spirits, listen to and remember the advice from doctors and who drive us to our appointments when they are often tired. Those of us who are parents know how we would so much have liked to have exchanged places with our children when they were ill and when it comes to treatments, so often our partners would prefer to bear the pain themselves than watch us go through it.

It is Ray who fields the telephone calls, going into detail with true friends and relatives but fending off the merely curious. This week involved two return drives to the Marsden despite his being tired after coping with my sleeplessness resulting from my tortuously itchy skin. I am so glad he can balance things with running the courses and looking after the boat. Both provide opportunities for his other interests and talents plus encounters with people who are not cancer sufferers or medical staff. When we married all those years ago neither of us could have imagined the situation we would be in now but thankfully those good years have been excellent preparation.

The Hickman Line is out and that is one more milestone to recovery.

Royal Marsden visit

Going to the Royal Marsden is always interesting. If I am lucky I meet people who have also recently had transplants and can compare notes. Yesterday Richard and Bob said that they had both got Graft Versus Host Disease (GVHD)and because they have had other complications beside their skin, they are on steroids. We all found we feel the cold abnormally and our partners this hot weather are sweltering as we beg for windows to be closed. We have found our sense of smell and particularly taste has been impaired. We can look forward to a food we know well but when it arrives it tastes nothing like that which we expect.

Richard has lost three stone in weight. Since coming out of hospital I have lost one and a half stone but I put on half a stone whilst I was at the Marsden because of all the fluid drips. I think my weight has settled now but I can’t eat much at mealtimes.

When I saw my consultant he was very pleased with how I seemed. He was glad that the GVHD had occurred as it meant that the graft would also fight the lymphoma, and also relieved that I had no other serious complications. I explained how itchy I was since the eczema was now all over and he asked me if I would like some steroids. I was rather reluctant as I wasn’t sure that the side effects of the steroids weren’t worse than the itching. The consultant also picked up on the fact that it seemed like a backward step going back to the immuno-suppressants. I decided I would put up with the itching a little longer in the hope that ultimately it will all settle down. Steroids have quite serious side effects for me including insomnia and dreadful nightmares when I do sleep. Perhaps it is a good thing I do feel the cold as in this hot weather I am wearing trousers and long sleeves to cover my unsightly rash.

I shall be returning to the Marsden on Thursday. Richard has just had his line taken out and Bob had his removed on Monday. We couldn’t get a Monday appointment as they were too busy, but my Hickman Line is coming out on Thursday. It has served its purpose well, particularly in hospital, and I shall not like the bothersome trying to find a vein to remove blood when I go for my appointments, but the line is now an inconvenience and since it was blocked last week is nearing the end of its usefulness.