Good day all.
Hope all well with everyone reading this. Bit of a change to things envisaged since the previous blog on 6th April '22.
I was expecting to send in a photo of the head wound to the dermatology crowd on the 25th April but it happened prior to that. Since the visit to dermatology to find out how to put the head bandage on and change it, the head bandage has been being changed every 2 days. All has been ok and the wound has as the doctor and nurses expected, looked like a strawberry and has been healing from the bottom up. On the 14th April i took a photo of the wound and emailed it in to dermatology as something started appearing that did not look good. A greenish type substance had started to grow inside the wound out towards the edges of the wound and is increasing in quantity. I heard back pretty immediately by email that an appointment had been made for me the following morning at 1030. Got into see the nurses at 1040 on the 15th April when they took the bandage off and took a swab of the green stuff and were not sure what to say as they obviously had not seen this before. After taking a good look at the rest of my head the nurses put a new bandage over the wound and arranged for another appointment the following week at 0930 on 21st April, by which time the result of the swab test should be known.
Got taken into the dermatology unit on 21st at 0935 where i was immediately advised that the green stuff amounted to nothing and certainly was nothing sinister. I was obviously starting to be a member of the "odd squad" as there were all sorts of discussions about the remaining carcinomas on my head and two other biopsies that had been taken and whether or not i had had anything like this before. The answer to which was "no". One of the biopsied areas on my left temple could be dealt with using cryotherapy - nitrogen at a very low minus temperature. The other biopsied area would need surgery but was not as big a job as the area where i had already had the squamous cancer cell removed. They would do the cryo stuff on the temple area and a second area on my head there and then. This was an eye opener for me as although i had previously had a very limited amount of this treatment on my first visit to dermatology previously this was not the same, apart from the nitrogen product. The second area to be treated would be on the back but high right side of my head. What happens is you sit in a chair, the same as happens for the head bandage change. The nurse has a flask of low temperature nitrogen with a nozzle on it which looks like the end of a welding torch. The nozzle is then held fairly close to the area to be treated and nitrogen is sprayed onto the area for 15 seconds. It is obviously extremely cold and after a few seconds get to the stage where you would want to move away from it but you have to stay still and let it go on. The best thing to do is remember to breathe normally as this has the effect of keeping you calm. 15 seconds does not seem very long but when you have low temperature product fired at your head it can seem an age. After the 15 seconds the process stops and the area allowed to thaw out for a few minutes. Then you get another 15 seconds on the same area. This is not quite so bad as your head is already numb from the first spraying but again, you have to remember to breathe normally. Then when that is finished i got the same treatment on the second area. I was told the area would blister and weep but not to burst the blisters. Keep covering the areas with clear grease / vaseline until healed. The treatment might leave a white scarred area afterwards. So that was it for the day. Send them photos next week of the areas and the wound next week.
27th April i sent in photos as requested. This was a Wednesday so i would have to wait until the next day when the doctor would be available to look at the photos and make any decision as to what would happen next. Info on Thursday was that i had another appointment to see dermatology on the 5th May at 0930.
In between now and then i have my next appointment with the Oncology crowd for bloods etc. They seemed more interested about what was going on with my head than anything else, but the bloods were ok all the same. Haemoglobin 13.8, White cells 4.9, Neutrophils 4.3, Platelets 93. Come back in 4 weeks and they will do more tests than just the bloods taken today.
5th May 0930 visit to Dermatology. Main head wound ok and healing coming on well. The level of new skin in the wound is nearly up to the same level as the rest of my head surface. The green stuff has disappeared altogether. Keep changing the head bandage every 2 days. Anew bandage was the put on. There was more discussion then as to whether i had had anything like this previously to which the answer was agin "no". I advised that all this head stuff had started to show itself shortly after the stem cell transplant for the leukaemia i had and when my immune system was down to zero. Initially it had just appeared as dry skin in all the areas on my head but had got gradually worse and new areas appeared later. Obviously i didn't know any better - i thought it was all part of what happened when you went through this treatment. Then i got the GVHD for the first time and although all the reaction to that with the skin rashes and sunburn effect went away the head stuff never did but at that stage it mostly still appeared as dry skin. It was only after the second go with the GVHD that i started to ask questions as to what was going on. The GVHD on the second go appeared in different areas, most notably on my hands and arms up to my elbows. My left hand had been worse where there was also swelling to the extent where i could not close my hand properly into a fist. I had 3 biopsies taken of this hand. All this disappeared after another round of steroids, including the biopsy areas, but the head stuff still remained and was starting to bleed and scab over in some areas. It was then obvious to me that something else was going on as if all the damage created by the biopsies and the skin rashes had gone why hadn't these other areas. It was then that i was referred to the dermatology department and it took afew months to get through the door to see anyone.
Back to the same day 5th May. After the head bandage was replaced i then got more of the cryo treatment with low temperature nitrogen. The nurse did another 6 areas for 15 seconds each but only once on each area and not twice as previously. These apparently were not bad enough to warrant the second blast with nitrogen. The same reaction happens though, although i did have a pretty cold head after 6 goes with the nitrogen gun. My head was still cold over an hour later after i had got home. Same process for these as the last 2 - keep them vaselined until healed, don't burst the blood blisters. Photos of all areas to be sent in 2 weeks time. Apparently i will get my next appointment with them in 3 months time, but we will see what happens. Next appointment with Oncology early next month.
That is it for the moment. All good as far as i am concerned as a t least things are being sorted out. If anything else happens inbetween the envisaged appointments i will advise at some stage, hopefully a bit faster than on this occasion.
Stay well everyone. Still not allowed to run due the head stuff but i have started doing the "squat" challenge that i did when i was inhospital last year for the transplant. So far i am up to 200 squats in 10 minutes. Do these in groups of 20 with ten, fifteen and twenty seconds intervals between the groups. Obviously the 20 second pauses come later when my legs are starting to go rubbery and jelly like. Other exercises as previous with 6 minutes of work out and up to the same time interval, 6 minutes rest before doing another 6 minutes of different exercises.
All the best.
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