My 34 year old daughter had rare tumour

Hi  and welcome to the online community

I haven't been in your position, as I was the one with cancer, but I do understand the anxiety that waiting for tests and scans can bring. You might find it helpful to look through this information from Macmillan on your emotions when someone close to you has cancer.

Unfortunately, or fortunately depending on your point of view, this group is very quiet so it might be a good idea to also join the family and friends group where you can share your feelings and get support.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and ask questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your daughter's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sending a supportive ((hug))

Dear latchbrook,

Thank you ever so much for your really kind and helpful reply to my post. It really is very sweet of you. I am sorry you have had to go through a difficult journey yourself and I do hope you have recovered on on the road to recovery. I will follow all of your good advice. 

We have good news for the scans which was an amazing feeling but unfortunately my daughter is so traumatised she still feels very down. 

I am sending to a big hug back in return 

Hi

I'm really pleased to hear that you had good news from your daughter's recent scan. Hopefully that means you can now have a relaxing and enjoyable Christmas.

Thanks for asking after me, it was very thoughtful. I am no longer having treatment but do have check-ups every 3 months, which is a little stressful. I don't mean the check-ups are stressful but there's always that little niggling thought at the back of your mind of 'what if they find something'.

I'm sorry that your daughter feels traumatised and it might be an idea to encourage her to join this community as it would give her the opportunity of speaking to others who are living with cancer or who have undergone treatment.

Wishing you a peaceful Christmas and thanks for the hug!

x

Hello 

I really understand what your going through. My  son is 25 and was diagnosed with Acute lymphoblastic leukaemia middle of August 4 weeks after graduating from uni.  It is the most surreal time ever. He is due for a bone marrow transplant from his sister start of February. Hoping that will be the start of his new cancer free life or lemons as I call it. I hate saying the C word. 

Never did I think I would be on this forum discussing my son. 

I really feel what your going through 

Take care

Hayley x

Hello 

I really understand what your going through. My  son is 25 and was diagnosed with Acute lymphoblastic leukaemia middle of August 4 weeks after graduating from uni.  It is the most surreal time ever. He is due for a bone marrow transplant from his sister start of February. Hoping that will be the start of his new cancer free life or lemons as I call it. I hate saying the C word. 

Never did I think I would be on this forum discussing my son. 

I really feel what your going through 

Take care

Hayley xx

Hi Hayley,

Thank you so much for your reply. I am so sorry you and your son and the rest of the family are in this position. It just doesn’t seem right or fair. I do hope his bone marrow transplant goes well and as you say he will be lemon free. I also can’t use the C word and when I talk about it I say her tumour was not benign.  It’s very hard for young people and also very hard for us mums. I always wish it was me and not her. She is not coping psychologically and has a three year old gorgeous little boy. She is even finding it difficult to enjoy him. I hope your son is coping ok. I will  keep him in my prayers  and hope he will be back to his life again soon. I wish you strength and as you say really feel what you are feeling.  
I hope you all manage to have a nice Christmas, although I know it is not the same. Wishing you a much better year in 2020. 
Take care 

Rebecca xxxx

Hi Rebecca 

I echo your sentiments in return to you and yours.  Nicholas plods along then it will hit him.  

He had a meltdown few weeks ago as we had to attend to chat about radiotherapy sessions before transplant.  It will more tgdn likely affect his fertility.  He is very lucky that they froze samples for him first week of diagnosis. I told him this that he can have children but it's still not nice to hear . 

I can imagine your daughter is struggling especially with a 3 year old. It's horrid.  I never thought I would miss my routine of work so much. 

Your right about Christmas it's always lurking in the background lemons that is!!

Feel free to message me any time 

Hayley xx

Hi Hayley. I was wondering how you and Nicholas are doing? I am praying all is going well with the treatment. You are in my thought. Rebecca xx

Hi Rebecca 

So good to hear from you. Nicholas is doing really well. He is off to London this week for a few days  with his girlfriend. They are going to a professional camera exhibition (tv/film cameras).  He graduated in July as a cameraman but unfortunately as of yet hasn't been able to fulfil him dream role due to lemons as I call it!!

We had results of his bone marrow biopsy last Thursday his MRD levels (minimum residual disease) are now low enough to proceed to transplant start of February.  It's a very emotional time for us all as our 20 year old is the donor.

His bloods are all really good. Haemoglobin is just under what a normal persons is. 

We all still have a long way to go.  He will be in hospital for 4 to 5 weeks.

How is your daughter coping now. It's hard going I know. Sometimes it's hard to be strong for them. I just wish we weren't in this nightmare. 

Sending you a huge hug and Welsh cwtch 

Hayley 

Hi Hayley,

I am so happy to hear all the positive news about Nicholas. Great results and ready for the next step. I know it is going to be a hard few weeks but I will be praying all goes well and smooth for him and he will come out the other end closer and closer to the end of this nightmare. Very emotional for the whole family with his sister being the donor but I am sure it helps her knowing she is helping him. 
I admire him for going away for a few days and continuing with his dreams  that’s what he needs to be doing rather than what our children have been having to do, which is have treatment and be in hospital  

My daughter is doing ok and getting a lot of psychological help to come to terms with what has happened to her and her little boy and family. Scans were clear thank god and the next ones will be in June. She so desperately wants another child but is very scared, as am I I!!

I wish you and I had met through another channel and not through this horrific nightmare. However nonetheless it is very nice to be able to communicate with you. I am here whenever you need a chat.

By the way my husband is half welsh and his family live in Usk and some neat Cardiff. So I send you a very huge and warm (sort of) welsh hug back. We live in London and if you are ever here, I would love to meet for a coffee. 
love 

Rebecca xx