I live on the island of Jersey, one of the Channel Islands in the English Channel. South of the UK and near France.
I was 51 at the time and had been moaning about aches and pains for ages with no one taking me seriously. I was able to mutter those immortal words by Spike Milligan "I told you I was ill" *cackle*
The multiple myeloma was picked up by a fluke. My normal GP (doctor) was on holiday, so the doc I saw this time took a blood test and then I was sent to the haematologist / oncologist at our local hospital.
I then had to endure a bone marrow biopsy in my lower spine and then my rib cage. OUCH isn't strong enough to describe the pain. I nearly went through the roof. multiple myeloma was diagnosed a couple of days later.
Treatment started immediately. I can't recall the meds I was on apart from 20 tabs of dex every day. I didn't sleep for 5 days and my house was gleaming from all the housework I did. I was catching dust before it had time to settle LOL
Then I crashed and slept and slept.I was put on a maintenance dose of dex. I also had the IV drip of Zometa every month. I had that for years and lucky me developed osteonecrosis of the jaw. I had to have my upper back teeth taken out plus all my lower teeth apart from 2 on the right hand side and my wisdom tooth on the left. However, I have been left with a dirty big hole which doesn't heal and jaw bone keeps coming through my gum. The hospital are paying for new gnashers for me. They are being made by a lovely chap called Wolfgang in Munich, Germany. I get a fitting on Tuesday. Hopefully my last.
Now back to December 2006. I had to go into hospital 3 times for the side effects of the chemo. The 3rd time I didn't get out for 4 months.
Those 4 months were extremely eventful. I was put into a side room as I tested positive for MRSA. I remember asking for a bedpan and a healthcare worker having a go at me for soiling the bed as they weren't quick enough with bedpan. That is the last thing I remember.
Next I was in the bright light feeling at peace and just happy to be going up. However, I then felt something over my mouth and started fighting back asking them to let me die. Well they didn't.
I was then transferred to Intensive Care where I flatlined once more.
Then one of the surgeons noticed a dark spot that started getting bigger and bigger on my left leg. I had necrosis. I was asked to sign a form giving them permission to amputate my leg if they could not save it. Well, by that time, I was finding everything hilarious. So I signed as they looked worried and asked did I know what was going to happen.
Long story short. Leg was saved. A couple of months later I was flown by air ambulance to Odstock Hospital in Salisbury, England to have a skin graft. That hospital is renowned for burns victims.
I had the maggot treatment. 100 to start with. Then 300. I could feel them munching away sometimes
Then when the time came to take the dressing off the surgeon had got tired and sewn skin on half leg then stapled rest. So I had to have staples out. They gave me a good old swig of Oramorph and started taking staples out. I had to have a top up of Oramorph along the way. HA!I was flown back to Jersey to our hospital once more. Then I was allowed home.
Since then I have had 4 more cycles of chemo. I have never finished a cycle yet as the side effects are brutal. I have managed 2 and a half months out of 4 months. Then it was 8 weeks, next time 6 weeks.
Then this January I had to stop after 4 weeks.
I asked my lovely cancerman what would happen if I stopped chemo altogether. He regaled me with all the nasty illnesses I would contract etc etc.
I was a bit surprised as one of the nurses had told me I would drift off in my sleep.
So, as things stand, I am still here even though I should be dead. I will be seeing my cancerman on Wednesday to see what my number is. I notice that you all talk about spikes and gamma and things I know nothing of. I just go by the number I see on the screen and once it gets into the middle 20's and higher I know it's chemo time again YAY!!!
I have also been diagnosed with arthritis and fibromyalgia. Plus the bones in my lower spine are fractured.
Apologies for the length of post. I do tend to rattle on.
I also have a warped sense of humour which I think is what gets me through.
