[TinaParticipant]

Hi All,

Just back from my two week hols in the Red Sea. Intended to scuba dive but learnt to windsurf instead, something I will be taking up in the UK from next March. I did get weepy as this was the first holiday I have had without Patrick and missed him so much. He would have been amused though as I can often get gung ho about sports and this time I broke my toe!Confirmed this morning.
Tina X

[TinaParticipant]

Hi Min,

I too am going on holiday, my sister and I are going diving in the Red Sea. Although excited I have mixed emotions as I imagine similar to you I have not been away without my husband for he last 34 yrs.

Glad to feel you are feeling much better.

Tina X

[TinaParticipant]

Hi Sue,

Thought is was worth mentioning that when Patrick was on Bendamustine for just over nine months he suffered with a low platelet count therefore interesting to hear Michael is still on warfarin. Worth keeping an eye on.

Best Wishes
Tina X

[TinaParticipant]

Dear Sarah,

No need to apologise, I feel just the same. Pat was so energetic and full of life and charmed everyone he met, he was a good person – why him?

It must be so terribly difficult being in the hospital environment again, do you have someone with you?

I wish I could give you words of comfort and a big hug but I know we will get through this truly unbearable time and if I knew how I would surely share it with you.

Tina XX

[TinaParticipant]

Hi Everybody,

As most of you will know my hubbie Patrick lost his battle in May of this year.
As the last four years have been a battle with the B**** Myeloma it is sometimes hard to think what life was like before Patrick was diagnosed.
Yesterday I charged up one of his old mobile phones and looked through the saved video clips. The content which included me and Pat's voice had me in complete stitches and I have re-run it over and over and have been in a fit of giggles everytime.

His friends and work colleagues always commented on his sense of humour and now everytime I feel down I will play that clip and remember him the way he was.

Tina

[TinaParticipant]

Dear Julie,

Your lovely mum and I had many cyber conversations and she was sounded like a wonderful lady. I am so happy that she was with her loved ones at home when she was finally released from pain and suffering.

Take care
Tina X

[TinaParticipant]

Hi David,

As we know both drugs are used in the main to treat high levels of calcium in the blood where the calcium leaches out of the bones. (hypercalcaemia)

Two thoughts on why you are having one and not the other:

Sodium Clodronate or brand names – Loron & Bonefos are thought to be less harmful to the kidneys than Zometa.

Zometa is more expensive.

Tina X

[TinaParticipant]

Hi Wendy,

I have been following this blog from the USA for over a year. It follows the trials and tribulations of Lonnie Nesseler who had a non related transplant – makes for very interesting reading.
If you read it just bear in mind that at the time of the transplant Lonnie was extremely weak and the transplant was his last chance of survival.

Best Wishes
Tina

http://nesseler-medical.blogspot.com/

[TinaParticipant]

Hi Bridget,

Good luck with your Bendamustine treatment you are surely due some respite after all the pain you have been in lately. As I recall, at least with Patrick, there were very few undesirable effects with this drug.

Tina X

[TinaParticipant]

Dear sue,

Great to hear from you but so sorry you are being challenged in every which way, you must be mentally and physically drained. After Revlimid it appears that most MM sufferers are more prone to infection and I am sure you are very vigilant in looking for signs in order to act quickly.

Good to hear Michael is about to finally recieve treatment,how is he coping? Does he have a PICC line to avoid all the cannulas?

The very best of luck with Bendamustine, I hope it works as well with Michael as it did with Patrick.
Tina X

[TinaParticipant]

I love hope and optimism, inner strength and learning anything new.
I love the smell of newly cut grass after it has rained
I love cute puppies..ahh
I love beating my younger sister at anything!
I love to laugh
But most of all..
I love the beautiful memories of my very special husband and would give up absolutely everything to have him back

[TinaParticipant]

Hi debs,

I have sent you a private message

T

[TinaParticipant]

Hi Debs,

Good luck tomorrow!

Tina X

[TinaParticipant]

Hi Amelie

Just a word of caution, my husband used Zometa on many occasions but after he had kidney failure (and recovered somewhat) his consultant was hesitant to return to it due. This is not because it caused the kidney failure but that we were told that it would put more strain on the kidneys.

Tina

[TinaParticipant]

Hi Gill,

I think you are right to highlight neutropenic sepsis as I believe I am correct in thinking that it is a condition most myeloma sufferers will find themselves in at some point due to a low neutrophil count.
Patrick managed to overcome at least three episodes due to quick action in recognising symptoms and getting him in to hospital and having immediate treatment. The part which can be both time consuming and difficult is identifying the bug causing infection – it is not until then that the most effective antibiotics can be given.
Any sign of a raised temp, rigours etc do not delay – get to hospital asap.

After overcoming these episodes on many occasions Patrick unexpectedly slipped into a coma after I took him to hospital with a pain in his chest, and died a day later.

Best Wishes

Tina X

[Author]

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