Watch, wait and wonder ….

…again! The consultant yesterday was reluctant to do much more. So I must hang on for another week and see him again next Tuesday. I must admit I do agree with him, although I quickly want to get to my next round of chemo so I can get it all over and done with, but unfortunately my side effects if anything have got worse. Last night was rough, even with the highest dose of pain killers I can take and an extra sleeping tablet I was woken several times either by hot flushes or the severe pain.

The neuropathic pain appears to have got worse, according to the doctor yesterday it is a good sign and demonstrates how well the Velcade has worked but he is reluctant to give me any more at the risk of permanent damage. I must admit I couldn’t put up with this amount of pain for the rest of my life.

The good news is my head is in a better space and I even managed to put on a spot of make up yesterday. I must admit I was quite happy with the results even with my bald head.

Today I think I will try to contact my local Macmillan or Palliative care service to see of they can advice me on pain management other than that I will rest as I want to preserve all my energy for Friday.

Scores on the board today are; Physical Health = 8 Mental Health = 5

I see a bit of blue sky peeping out between the clouds from my position lying here in bed.

If any one is passing feel free to pop in, I shall probably set myself up in the conservatory today.

Have a good day yourselves and don’t work too hard.

Love from Deborah x

Pain vs Pleasure

Yesterday I experienced more pain than pleasure I am afraid especially towards the evening.

It was a pleasure to see my daughter and lovely grandson and I really appreciated the fish and chip lunch and birthday cake they brought round.

It was also a great pleasure to have my very brave husband home. Colin got through the angiogram to be told by the cardiologist that he had excellent arteries and a healthy looking heart. He and I were of course delighted by this news but also rather confused as to why he is experiencing chest pain and feeling very tired following doing quite menial tasks. More investigations need doing I think. We do appreciate that stress may be a factor but I think something else may be going on.

None of these pleasures could balance out the pain I was feeling last night. The pain definitely increases in the evening so I lay there feeling really sorry for myself and actually crying with the pain which is very unlike me. I tried hot and cold presses, took double the dose of Tramadol, paracetamol and then a sleeping tablet. Together this eventually did the trick and knocked me our for the night.

This morning it is not so bad, perhaps a 5/10. Good job as I have some last minute prep to do for tomorrow nights Village Secrets event. I am really looking forward to this and will NOT allow any amount of pain to get the way. The only disappointment will be that dosed up on pain killers I will not be able to join the girls in a glass of a Prosecco 😦 I will not however let that stop me from having fun.

I hope you all have more pleasure than pain today, in fact I hope you have no pain at all.

Have a great day.

X

Great News, Happy Birthday and Good Luck.

I am practically in remission hip hip hooray! I haven’t yet got my para protein results but they should be through in a few days and I am hopeful the magic numbers will have decreased again. Maybe they will all be un-quantifiable, which is as good as it gets and is called complete remission. This is after only 3 cycles of chemo so the doctors are delighted.

Not to put a damper on the great news, but unfortunately the side effects of the Velcade are causing some considerable pain and according to the doctor yesterday, likely to get worse. I have been given more medication to cope with this, including if required, Tramadol which I am reluctant to take unless I really need to do so. It appears that the Velcade has disrupted some of my nerve ending and I have lost some feeling in my arms and legs. It is because of this I am having a two week break in my chemo regime and we will then see what happens. The doctor did reassure me at this moment in time I will remain on the PADIMAC trial, which is good news, I think.

The doctors would like me to receive another cycle of chemo to give those few remaining cancer cells a blast but we will have to wait and see what happens. The side effects if you are not careful can be irreversible hence the reason for their caution.

All this means I get to keep my renewed sense of taste for a bit longer and perhaps my hair might grow back a little. Unfortunately I am, still likely to feel quite tired as my HB levels remain fairly low and fatigue is a side effect of one of the new drugs they have put me on.

All in all the news is fantastic and better than I could have dreamed of so thank you all. What a great job you have done in partnership with the medical profession and all the well researched drugs I have received.

We are winning the battle!

Those naughty cancer cells didn’t stand a chance and like I said right at the beginning they picked the wrong body to invade.

Myeloma is such an individual cancer and I appreciate that not everyone has such a good outcome and I feel very sorry and sad about this. It is why it is so important for me to raise as much money as possible for Myeloma Research. There are many young people out there with myeloma and a cure needs to be found soon. I am not about to run a marathon but I hope I can raise quite a bit from the sale of tickets to my charity birthday party, I shall have to think up some other ideas too.

So I am excited for the doctors to confirm that I am definitely in complete remission. Then the hope is that I stay in remission for as long as possible therefore delay the need for the inevitable stem cell transplant.

On another happy note, today is my baby daughter’s 24th birthday. Of course she is now a fully grown woman but in my eyes she will always be my baby girl. It really seems like no time at all since I was pushing her around in a pram and now she has her own little baby boy. I am so proud of how she is bringing up Elliot and what a good mum she is. I look forward to our lunch together today.

Happy Birthday Jem xxxx

Poor Colin won’t be able to join us for lunch, as he is very calmly and bravely going in for his Angiogram today. Colin doesn’t like anything medical especially if it is happening to him and at one point I thought he may back out, but he has jumped put of bed with a positive mental attitude. He knows that this could result in an improvement in his life and is hoping for increased energy and a new sense of get up and go! Oh dear will I be able to keep up with my new man? Perhaps with me in remission and his new vitality we will both be dancing under the stars naked in the rain. God forbid!

I think today is going to be a good day.

I hope yours is too.

X