Hi Sue

Glad to hear Michael is back home but sorry to hear you his treatment may be compromised due to the low neuts and platelets. I believe the management of platelets will be a priority over anything else even if the trial cannot continue. Can't Michael have Bendamustine outside of the trial due to his curent circumstances? Patrick also had…[Read more]

Gaye, God Bless You and may you rest in peace. I knew you would have only had a week or two left in this life and hope your last breath came softly.

Although I was expecting this news I was overcome with tears and taken back to the day my darling husband was taken from me. – what a lovely person you were, we will all miss you.

Love

Tina

Dear Sarah,

I am sure you found it very heartwarming having so many people at the funeral to bid a final farewell to Gordon. I am so glad you have family around to support you and as Bridget says make sure you take care of yourself. Gordon is now free of pain and all the angst that this b**d illness brings.

Strength and love

Tina X

Dear Sarah,

I was so very sad to hear of Gordon's passing. At this overwhelmingly difficult time try to take some comfort in knowing that he is at peace now and free from pain. He will never really leave you, you will hear his laugh and see his smile, remember his words and feel his love.

Thinking of you and your family

Tina X

Hi Sue,

Brilliant!!

Yes, the key is recognising the symptoms of an infection and getting to hospital as soon as you can. Unfortunately this may happen again with low neutrophils but best to be prepared.

All my best wishes

Tina X

Dear Gaye,

I was thinking of you only yesterday and here you are. I completely understand your decision and hope you are at peace with it, the hospice will look after you I am sure.
If you would like to talk to me about anything including end of life drugs etc please don't hesitate to contact me at pa.davis@virgin.net.

Strength and…[Read more]

Hi Sue,

I am thinking of you and Michael and know how you both must be feeling. Please don't despair IV antibiotics work wonders and together with a bit of luck Michael will be home soon.
Sending you strength and hugs.

Tina XX

Hi Dai

I am truly shocked at what I am reading, I just can't believe how you have been treated!
Whenever there was the slightest "worry" Patrick had instant access to the Haematology ward or they would be asked to come in straight away to see the consultant who always sorted treatment immediately.
Your post particulary raised an alarm in…[Read more]

Hi Sue,

How did you get on Yesterday? Hope it was a positive visit. When I think about it Patrick did have some sleepy days but you are probably right in thinking it could be combination of low red cell count and all the treatments Michael is having.
Hope he is feeling little better.
Regards
TinaX

Hi Susannah,

The PICC line is similar to a Hickman in that it is used to take blood and give chemo etc. It is inserted into a vein in the arm usually just above the crook in the elbow. This is done under a local anaesthetic under x ray guidance. A very small tube is inserted into the vein and guided up into the chest area. I was with Patrick…[Read more]

Hi Susannah,

I sincerely hope the Bendamustine works for Michael and he doesn't suffer too many side effects. Patrick's infusion only took an hour- guess the time difference must have something to do with the trial.
Have you thought about suggesting a PICC Line for Michael? I really regret not pushing for this for Patrick as it was an almost…[Read more]

Hi Dai,

Your story brings memories of the many number of times Patrick was admitted with high temps, he was needle phobic and was, so the nursing staff say, thier worst nightmare to cannulise. I would suggest, if you are in a situation where you need regular cannulas to ask for a PICC line. Unfortunately Patrick had his only a week before he…[Read more]

Dear Joanna,

Very sorry to hear Bendamustine did not work for you. It's interesting to see how treatments differ so much across the board. Patrick was not using either thalidomide or dex during his Bendamustine treatment, probably why he didn't suffer with side effects – and maybe why the treatment worked for him for 9 months, who knows?
The…[Read more]

Hi All,

I was so worried about Gaye I contacted Barts Hospital to see If I could get the heads up. Gaye was not an in patient and there was no record of anything untoward happening to a person of that name in the past weeks. I hope this means that Gaye is still hanging in there and is just too tired to come on line.

Tina

Hi Susannah,

I am so sorry that Michael had to come of Revlimid and you are now having to make this decision. Yes, as you know Patrick took this road which gave him another 9 months of virtually side-effect free life. I do not recall that he was taking thalidomide or dex along with it? Just at it did with Revlimid Patrick's platelets went down…[Read more]

Hi Angelina,

I am practically minded too and I started planning with Patrick before he passed away in May. I also collected all my favourite pictures and put them in an album which is now helping me with the story of our life together. You may not have the physical or mental energy when John is no longer with you therefore in my opinion it is a…[Read more]

Gaye,

I too have been thinking about you as I know your journey has been very similar to Patrick's. Please let us know if there is anything at all we can do for you.

Love Tina X

Dear Min,

Please take heart, Patrick had great success from Bendamustine by this I mean it gave him almost a year of virtually side-effect free life. He too had very little success with velcade and revlimid and only eight months remission after his SCT. I do not understand why Bendamustine it is not used more widely.

I can understand how…[Read more]

Oh Susan,

I only just posted the loss of my husband Patrick who died this Friday gone and am so sad to hear of your loss also. I hope you are recieving plenty of support and I am sure you are so proud of Kevin and miss his terribly.
Best Wishes
Tina