[cupcake70Participant]

hi robbojnn – good days are now getting more but still have odd days,i have next consultant appointment end of august and hoping pp levels haven’t gone up again,not on maintainance so I guess that’s a good thing maybe!! I know this time I will be asking lots of more questions that I have before so that I can get the facts or figures straight in my head and have a complete understanding of what its means I think this will help.Way I see it I aint giving up,the power of positive thinking is strong and as long as I can get general stress levels down,i think I am going to be good for a long time yet.I have a wonderful husband and a 19yr old daughter(stressing me at moment!! don’t they all !)  and I have plans,so stay strong,think positive and we can all beat this ,good luck and god bless to you to x

[cupcake70Participant]

I always feel better once I have been on this forum,it helps to know that I am not alone in how I feel.So much of what has been said rings so true.I was diagnosed in 2014 and had sct same year and my pp levels are very low but are on the up,i had very good result immediately after sct,complete remission till may this year.I was of a very positive mindset throughout and immediately after sct but when I was told pp levels up that’s when I got into a downward spiral and am struggling to find my way out of at the moment,some days a better than others and I know I need to get back to being positive but its hard.Any suggestions would be greatfully appreciated

[cupcake70Participant]

Hi Kay

I guess from what you wrote your a local lady.Thanks for your kind words.I do try and stay positive 99 % of the time,still have the odd days though.Its been harder because there doesn’t seem to be many people local to me that have this awful thing in their lives.I have made a friend with a guy at queens who is at the start of his journey and his girlfriend keeps in contact.I have looked online for support groups in the area but the nearest one is at uch in London,would be so good to have someone else to talk too.

Seems like I might be worrying when I don’t need to.

Hope to be able to chat to you again.If you would like to stay in contact I can send you my email address via a private message if that’s even possible.

Take care and stay strong

mandy x

[cupcake70Participant]

hi ian

had barts appointment,they don’t want to see me till October but just been to queens and been told pp is at 4,so I am so anxious and confused now,does that mean it hasn’t worked so good,am I in partial remission now.The consultant at queens says as long as it doesn’t keep going up shes not over worried and wants to see my in three months,little bit scared again ,not sure how I feel .Trying to stay positive but all sorts going through my head now 🙁

[cupcake70Participant]

Hi Ian,

Sorry to hear that,glad to see your still staying positive though 🙂

I am back at barts in may,they want to keep an eye on me ,as they put it.

Guess until then its onwards and upwards

Take care

Mandy

[cupcake70Participant]

Hi Ian,

Saw your recent post in which you mentioned little old me,bless you for your concern.

I have just had my 100 day appointment at barts and at the moment have been told am in full remission.

They journey through sct was ok,ended up being in for 3 weeks and only side affects were bad stomach and bad mouth but that was it,your suggestions and insight into what might happen really did help.

Am pretty much “back to normal”,have slight achy bones/muscles on and off ,have zometa infusions every month and gets worse for a couple of days after but other than that not to bad,still have odd down days but have been offered counselling which I have said yes too,there is certain things about this journey that I feel I need to speak to someone about ( someone that’s not family).

Am back to work next week ,3 days a week initially so hoping that will go ok.

Hope your doing ok and again thanks ,my the journey easier

mandy

 

[cupcake70Participant]

Hi Ian,

Small world :).

Thanks so much for the info,its put a lot of worries that were coming to the fore at rest and I have copied it so I can print off and show to hubbie,i know it will really help him.

I didn’t go to the ward when I was there last just the day unit so I guess it will single room maybe when I go in for the final bit.

it so nice to finally be able to chat to someone whos been through it so recently.

Again thanks so much for the info

Keep well
Mandy

[cupcake70Participant]

Hi Chris,

With all these kind words and encouragement how can I not stay positive,i have a feeling i’ll be ok and hubbie wants to take me away next summer for our wedding anniversary so I have to get through it and stay well :).

Take care
Mandy x

[cupcake70Participant]

Hi Tony ,

It’s been a good start,first part of the sct process out of the way yesterday,like yourself not looking forward to long stay in isolation but I plan to take things in to occupy myself.Family and friends have threatened to visit me if they can while i’m there!:)

Regards
Mandy x

[cupcake70Participant]

Hi Rebecca

The cyclo infusion went ahead as planned,thank god.All Seems to be going ok at moment and harvest is due to go ahead about a week from now.I am so glad I joined the forum,such nice and people and very encouraging words.My family have been brilliant but its just so nice to speak to people the have gone/ or aregoing through this journey.Definately making plans for once its all over and hope to be able to go on a nice hol with hubbie next summer.

Keep well,take care.

Mandy x

[cupcake70Participant]

Hi Karen,

In the end throat seemed sort itself out and the iv cxclophosmide went ahead as planned,next step harvest in just over weeks time,have the joys of the gcsf injections to look forward after today,touch wood all going to plan so far. Glad to hear your well,long may it continue. Hope to speak to you again soon.

Take care
Mandy x

[cupcake70Participant]

Hi Mavis,

Thanks for the kind words,its nice to know there are others that understand the journey we all take with this. Feeling more positive this morning,crossing my fingers that everything can go ahead as planned .Thanks again

Mandy x

[cupcake70Participant]

Hi Mike

Thanks for the reply,have to report to day unit tomorrow as staying in their hostel next to hospital as live a fair distance from it and have to be there early morning.I haven’t spoken to anyone about the throat,i am drinking plenty of fluids and taking throat lozengers and hoping it will do the trick but I am going to mention it tomorrow when I get to the unit,temp is not up so I guess that’s a good sign. As far as the sct goes,i am prepared for the side effects as much as I can be but the one thing I am more scared of is being away from family,havent been apart for this long (potentially 3-4 weeks) from them ever. I have heard only good things about barts and so far the nurse specialist and consultant I have meet have been nothing but helpful and pleasant to talk to and prepared to explain everything and not judgmental or dismissive even when I ask what I think are “stupid/silly” questions.

Like hubbie keeps on saying ,”worst bits almost over … then you can take over the housework again!!” , 🙂 he’s been my rock.

It inspires me that so many people are post sct 5,7 and even 10 years and doing well, I plan to be one of those people to 🙂

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