25th August - 170 days post transplant

Hi all,

Well it has become a bit of a protracted rough ride. On the 13th August, yes 2 days after I came out I was back in Addenbrooks with another high temperature. I was out again on Friday 17th. The out come of which was that I had a severe reaction to two antibiotics. I have now been taken off these and every month have to go into Addenbrooks for a one hour session of having another drug via a nebuliser. This foul and has it's own side effects - nausea, fatigue, cough and caused a complete loss of taste and a continual dry mouth with no saliva.

How do I feel - Well my skin is pealing off in sheets, tired and generally fed up. I am sort of back at the stage when I left hospital. I feel cold, particularly late afternoon till I go to bed. Lost more weight after having putting it on.

Lets see what my consultant has to say on Friday

11th August - 156 days post transplant

Hi all.

I guess those of you who have not being following Mary on Facebook may have wondered what had happened to me?

A short synopsis of events from the 23rd of July is that I was taken into Addenbrookes in the very early hours of Tuesday 24th July with a raging temperature. Frankly I have little recollection as to what transpired over the next 2.5 weeks until I was released on Thursday 10th August. I was admitted to C10 the transplant ward and within a day or so transferred to Intermediate Dependency Area [IDA] as my temperature had spiked at 41.5 and my SATS showed 90% oxygen in the blood Here I was on Oxygen at 70% level and at a high rate of delivery. IDA is one stop before intensive care!!

I had 4 xrays, 2 CT scans and 2 ultra sounds plus arterial blood samples taken (ouch!!) as well as the normal twice daily blood tests

I had visits from Haematology, Heart, Chest, Infectious Diseases and Tropical Disease Consultants, all trying to figure out what was wrong.

Haematology said that on my paper results I ought to be in Intensive Care but physically I did not stack up against the figures.  We Welsh like to set puzzles! 

Eventually it was discovered that one of the rare side effects of one of my drugs was to screw up oxygen levels in the blood. Stopped the drug, put me on an intravenous alternative and SATS started to improve.

After further exhaustive tests no one could find out the root cause of the infection I had, except to say it was chest related. So as my fever had abated I was discharged home.

I feel as weak as water and as if I have been through a wringer backwards. Lost weight - great I don't think!!

Thanks to all friends and family who supported Mary and my children in prayer and practical ways over the last 2.5 weeks. Keep praying that I will make a full recovery and that this is the only blip I have.

I now have a week ahead of visits to Addenbrookes - more on this next week.

21st July - 135 days post transplant

Well today was just bloods, so not much to relate.
Feeling a bit off colour.
Blood pressure was  a bit on the low side.
As from today I will only post on a fortnightly basis after I have been to Addenbrookes.

14th July - 128 days post transplant

I forgot to post this over the weekend, so I hope no one is panicking that something may have happened to me. This weekend was the first that was nearly like a normal weekend. Got out and about a bit with Mary and managed two meals out at pubs. Time was chosen so that they were on the empty side.

There was no visit to Addenbrookes this Friday. Should have mentioned that last week!!! The situation is that I have bloods one week, then a free week, then the consultant the following week, free week and then bloods. This being the case I will now move the blog report to every fortnight after a visit to Addenbrookes.

Nausea has improved immensely as has the metallic taste in my mouth. It looks as if it will take a least a couple of months for my finger nails to sort themselves out and boy isn't that going to be a bundle of fun. They are painful at the moment and if you catch them on something .............!

My hair has definitely stopped falling out and is now in to the regrowing phase. The hair on my head, however, is taking its time over this!!!! Hair on other parts of my body id re-appearing much quicker.

I visit Addenbrookes this coming Friday for bloods and will provide an update after that.

7th July - 121 days post transplant

Well we are now a third of a year down the road since the Bone Marrow Transplant without any signs of rejection and getting stronger week on week. This week we had the results of my first bone marrow aspirate (BMA) I had a few weeks ago and it showed no signs of the disease. This is great news, though it does not mean that I am cured as we do have to wait for the results of two more BMAs, one in about 75 days time - the end of the second 100 days and another one a year down the road. We were seen by one of the senior haematologist and he was very positive and told me that I could now start to ease myself into leading a normal life.

It is highly likely that in about two to three weeks time I will start to have my childhood vaccinations again. This does underline that I have started a new life!!!

Stomach is feeling pretty good now. The problem I face at the moment is nausea when I look at certain foods. This could be caused my smell? I still have a sweet sickly, metallic taste in my mouth which increases as the day goes on and that does not help eating as the taste of the food can be awful.

My finger nails are giving me problems as they are painful. This is caused by the new nails growing behind the ones damaged by chemo.

Lost a little weight but this is likely to be due to the fact that I am doing more.

Fatigue is still causing a hassle, but it is not as bad as it was. Just need a rest in the afternoon, no longer in the morning.

30th June - 114 days post transplant

This week has had its ups and downs. I had a couple of days with a very bad stomach and felt extremely nauseaus. From Thursday I have been very good, except for the fact that I think my blood pressure may be on the low side. Seem to get a bit dizzy when I stand up. I am now down to one tacrominus in the morning and this change may the reason, but will sort it out next Friday when I see the consultant.

A first was acheieved on Friday. Chris and Sarah Broughton took me out to a pub in the country and I had a wonderful lunch of scambi, chips and peas without any feeling of nausea. It was just nice to be out in the community again, even though it was for a short time. This was repeated today when Tizzy, my daughter took me out for lunch. I pushed the boundaries further and had gammon, fried egg, chips, peas and a pinneable ring. Orange and lemonade was the chosen drink on both occassions - cannot cope with anything alcoholic! It does seem as if it is smell that is causing me to feel nauseaus as both meals did not have any overpowering smell, whereas a meal of mixed greens, potatoes and a meat with gravey does.

Still have the sweet metallic taste in my mouth, but this mainly a problem from late afternoon. It does seem to be going slowly.

The church house group that Nigel Greenslade belongs to at Brickhill Baptist Church came round Thursday evening and sorted my garden out for me. They did a marvelous job and stayed afterwards for refreshments - it was nice to have fellowship with them.

23rd June - 107 days post transplant

Well, no visit to Addenbrooks this week and I am in to my second 100 days stint. The week has been reasonable, with only a few days when my stomach really complained about having to accept food. Nausea has been a bit problematical and rather than bee a martyr I have succumbed to taking the anti-nausea pills which do seem to work to a large degree.

Still eating small meals and the weight is staying about the same. Hair is really starting to come back, though I guess it will be quite some time before I get a decent head of hair.

Skin is still flaking off. Maybe I should take shares in the company that makes E45 what with the amount I use every morning.

Made a couple of trips out to garden centres for coffee - got to start mixing with people, but this is fairly safe as there are not many people around on a school afternoon.

I know most of you are complaining about the weather, but I for one find it good as I am house bound the majority of the time!!