Oh what a day…

yesterday was!

After another lovely breakfast at our NHS hotel, we headed down to Radiology for my planning session. This involved lying flat on my back on a bed that took measurements with a dome shaped machine and laser lights of the tumour on my spine. A tattooed dot was then applied to the middle of my breast bone. It is hardly visible but will be there for life. So there is no getting away from it, I now have a tattoo which they were unwilling to embellish in any way. We were then told to go back to out hotel room and wait for a call to attend for the radiation treatment to start later in the afternoon. I am to have 5 sessions in all.

We knew our room had only been booked until Monday so we were also awaiting to hear what next to do about accommodation. We tried finding out but were told to wait for a call, which we eventually received from the hotel after 1pm asking why we hadn’t vacated our room. So we made our way, bags and all up to Ambulatory Care. Here we were able to see one of our hospital consultants who had a break between her clinics.

It was decided after a quick assessment that I could go home and travel in for treatment as long as I kept a close eye out for any signs of deterioration. The only beds that were available in the hospital were on non Heamotology wards and none of us thought this appropriate. So we went to hang out in the Macmillan lounge whilst awaiting for the call down for treatment. Thank Goodness for the Macmillan service,  a combination of drugs, poor sleep and confusion meant we were both feeling pretty emotional and grateful for the support they had to offer.

I eventually got a call for another appointment on Wednesday with he Radiologist Consultant (I think). At this point, I thought I had better check on appointments again with the front reception desk, who then informed me I should have been in another clinic half an hour ago! We made our way down to Radiology but they didn’t have a record of this so told us to hang around for another couple of hours until I was eventually given my treatment at 4.30pm.

Apparently radiotherapy  is is quite a complicated process, there is lots of working out to do to ensure that the patient receives the right amount of radiation to the right place. I am very grateful for their caution and expertise.

Receiving the radiation is like entering another Parallel Universe. It is all very quick and pain free. I had to lie flat on my back on another bed whilst another contraption slowly revolved around my body doing whatever it does. The operator leaves the big white space at this time and you just lay still for about 5 mins. Job done!

It was then another couple of hours wait for transport and our journey home. I must admit we were very grateful for the meal provided by Colin’s parents and to get back to our own space even if wasn’t until gone 9pm. Sleep however wasn’t on my side with steroids waking me hourly for visits to the bathroom.

So it’s back again today, tomorrow and Thursday for another round of radiation. I get the bank holidays off and go again on Tuesday the following week. Who knows what happens after that?

The side effects should be minimal but have been told to expect the pain to increase before it starts to get better. I may also experience sickness and other digestive problems due to the treatment but I have a host of medications to help with every symptom along the way.

This is my dressing table this morning!

image

 

Whilst all this has been going on my new toilet has leaked and is awaiting replacement and worse than that my laptop has died! Colin bought the laptop down to London but none of the Apple stores in London had a free appointment slot until next week, so we will try to pop it in to the Cambridge store after my treatment tomorrow. We have lots of work that needs completing and being without my technology is just the last straw!

There is Easter weekend to look forward to and I am really excited about catching up with my family. I haven’t seen Elliot for a few days now and he is growing up so quickly so I think an Easter egg hunt is in order!

Thank you all for your continuous kindness and support just knowing you are there makes a big difference.

Deborah xxx

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