Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Update on unbelievable

Kym66
Posted by

Not sure where to start 

I will go in order of my day yesterday 

Had my telephone assessment with occupational health they suggested  I have a risk assessment n complete all my treatment and not taking any of my controlled drugs oxycodone and fentanyl  patches b4 returning to work  well I said I'm on treatment for the rest of my life can u specify what part of my treatment r u referring 2 .and as 4 my medication if I dont take it I cant come to work due to the pain I will b in .... spoke to Macmillan afterwards they are going to help me as I'm protected by equity law as cancer is a disability................

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Good news my daughter was accepted on the young carers 

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Hospital appointment with orthopaedic consultant

I was told I also have sarcoma cancer on my left arm the rotator cuff and humerus bone  going to be transferred for treatment at the stanmore hospital in london 

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Daughter got a call at 8pm one of her close friends was admitted into hospital with blood clot in her lung n she had 3 mild heart attacks 

At 3 minutes pass 12 she was informed her friend had sadly passed away 

15 years old god bless 

                 R.I.P CHLOE

Kym xx 

tvman
Posted by

Aw Kym 

You have such a mixture of good and had news. 

Last thing you need is sarcoma cancer. I'm glad you contacted MacMillan like I and others advised. There sre equality laws and which protect you from victimisation. Also when you go for a job, your health is not allowed to be asked about. My father was a shop steward and I think that he has instilled some of that in me, fighting for rights. Oddly enough, I'm fighting a disability discrimination case against a local bus company. 

I feel for your daughter,Kym. To lose a close friend is a horrible event to experience. I hope the school lays on counsellors to help people through this awful period. 

You look after yourself, Kym, and try to keep your health good. I'll be crossing everything for you Kym.

Tvman xx

My philosophy is simple, love life and family.
Kym66
Posted by

Thank you Tvman

Yes the school had sent a email to inform parents n have counselling  in place ready for the children return after half term  

Take care 

Kym x

Kym xx 

daloni
Posted by

Hi

What an absolutely horrible day. You must be reeling. I am so sorry for everything you’ve been through today.

My heart goes out to the parents of that poor girl but also to your daughter. That is a tragedy. Such a young life cut short. 

The news about your sarcoma is also shocking. Did you expect this or was it out of the blue? Do you have any idea what treatment might be? What’s the journey to Stanmore like? It’s always best to be treated by the experts but it can also be a strain. 

I am glad to hear you have Macmillan on your case. The less I say about your occupational health people the better. I might get banned from the site for language.

My daughters are also registered young Carers. They do not use the services much but it’s allowed me to get free school bus passes for them and my older daughter gets an additional grant at university to supplement her maintenance loan. 

I wish I could do more than offer you a big virtual hug. It is a heartfelt hug though 

xxx

anndanv
Posted by

Hi Kym, What a mixed bag of a day you have had! What can I say! I hope the journey to get treatment at Stanmore isn't too far or too taxing for you. Regarding the sarcoma, I was going to ask the same questions as Daloni, so I will wait and read your reply.

Your poor daughter, no one of that age should loose a friend, how very sad. Do you think your daughter will speak to a councillor at school? Just let her know you are there if she wants to talk about it! No one can comfort you like a parent!

Love Annette x

Kym66
Posted by

Hi Daloni 

It's been a rollercoaster of a day  got a email from school they have set up counselling in school for the return after the half term all I could do was cuddle my daughter today I cant ever recorded any memory of her crying like she has today xxx 

Young carer offered more along the lines of youth clubs but I will ask about bus pass  

The sarcoma was a big shock no I wasnt expecting to b told thought I had been referred due to no movement in my left arm after all the ct ,mri ,bone scans   thought if any thing wrong I would have been told  . 

Getting to stanmore will b about a 4hour journey by train I did ask 4 transport but will have to apply via gp 

Hope u r ok n all well at hospital  

I'm goin to try n get some sleep xxx

Kym xx 

Kym66
Posted by

Hi Annette 

Thank u 

Kym xx

Kym xx 

daloni
Posted by

Jeez that’s rough. Just keep cuddling your daughter. It’s good she’s able to let it out. Counselling is all well and good but a mum cuddle is better. Reassure her that what happened to her friend is astonishingly rare and it’s not going to happen to her  - but I guess you already did that. 

I am really sorry to hear it was a shock finding with the sarcoma. I hope to goodness you had someone with you. The journey to Stanmore sounds a nightmare. Four hours each way? Is that even doable when guy have a long day of treatment? 

Oh dear. I am not sure I’m helping. You must have these questions running around your head already so you hardly need me to repeat them. 

I am going back to sleep now. I hope you can get some sleep too. 

Love and hugs xxx

Kym66
Posted by

Had my tattoos done for radiotherapy yesterday ready to start on the 13th 

my poor arm was held up by straps was in so much pain last night when I got home  my daughter had a nice cuppa  n a cheese sandwich ready for me but even better she put my dressing gown in the tumble dryer it was lovely  n warm 

Kym xx

Kym xx 

Tinalay
Posted by

Oh Kym, I'm so, so sorry for all that you're going through. 

Your daughter must be heartbroken and it breaks my heart too to think of such a young life lost and her poor family.

I was shocked to hear about your sarcoma so can only imagine how you must be feeling. I hope the radiotherapy brings you some pain relief, your daughter sounds like a wee darling.

Well wouldn't it be lovely if the plan OH came up with was even a remote possibility. Will leave it there because I could give a sailor a run for their money and like Daloni don't want to get chucked off the site. Big hug Kym, I'll be thinking of you and your daughter. xx

Tinalay 
fighting girl
Posted by

Dear kym

don t really know where to start 

your poor daughter is dealing with so much ,how tragic to lose a friend at this age , cannot imagine ,lots of mum hugs ,,are her siblings around for hugs and sleepovers ,i used to sleep in bed with sister if very upset 

i can t imagine your shock at new diagnosis,but Stanmore orthopaedic is ,according to friends ,a wonderful hospital,but an awful place to get to , 

sending virtual hugs and love 

janet

xxxxx

is it possible you could have a friend rota to take you to hospital ,is it two hours by car ? 

Xxxxxxxxxxxxxx

Kym66
Posted by

Hi tinsley

Thank you 

Yes my Danielle is on a rollercoaster of emotions at the moment and I think it could have hit her that one day she will b grieving 4 me even though I have explained my situation to her with the help of Macmillan I dont think it sank in until now xx I was very shocked with the sarcoma diagnosis still am tbh but another fight I have on my hands 

Dont get kicked of the site omg wont know what to do without Daloni

Take care 

Kym xx

Kym xx 

Kym66
Posted by

Hi janet

Thank u 

Yes I have 3 children Danielle being my youngest  my son still lives at home (I have been encouraging to step out in to the world response I get is dont b silly mum where will I get what I get here 4 £40 a week I will up your house keep then n no answer but a cheeky laugh)  my other daughter lives to far for danielle to go exams this year she in year 11 xx n my daughter comes to me every other weekend 

I have been told stanmore is a good hospital not looked it up yet on directions I'm hoping I will qualify for transport  hopefully I will as I get it now for radiotherapy and was getting it for chemotherapy 

Thank u for your virtual hug 

Take care 

Kym xx

Kym xx 

fighting girl
Posted by

Kym i think it is wonderful that  your son is at home at the moment ,for all of you ,my daughter and partner were with us for 6 months ,at 29 years old ,it was bit chaotic but helped us all ,as she is not that well and obviously i m not great

there is too much pressure on youngsters to leave home , enjoy him being with you 

hope your radiotherapy goes as well as possible 

xxxxxx

janet

flowerlady
Posted by

Dear Kym

It's difficult to know what to say, such a young life, utter sadness. I am glad that Macmillan are helping you. 

Much love to your family xx

Flowerlady x