Telling my child about my treatment

Hi Flwffen and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ my be different I do appreciate the challenges of this journey rather well……. although not dealing with an autistic child.

My granddaughters were born into me going through treatment so it was always part of life and they accepted it rather well and got into being grandads nurse.

You know your daughter the best so you most likely know the level to pitch the information. We have a family friend who has just went through Cervical Cancer treatment who also has a autistic daughter and she accepted the news no problem….. using words like ‘mum has a little and needs to take some medicine that may make mum poorly for a little time but the medicine will make mum better’

As for your hair….. what of the many treatments are you having?…… as some don’t actually result in full hair loss ((hugs))

Hi, thank you so much for your lovely positive reply. Do you know, what you suggest is along the lines of what I’ve been thinking. Just to tell her that I need some strong medicine and that it will make me feel very tired and I will lose my hair. She is actually a very sunny character and as long as she feels safe and is with people who understand her she is generally very good at coping with things. At first I worried that I would struggle myself with the blunt questions she is likely to come out with. But I have been reassured that treatment is generally successful and I am only at stage 1 so that has to be a good start.
We lost my mother in law in the same week I went for my first scan and my daughter has since been asking me when I will die and saying she doesn’t want me to die etc. That was hard to deal with because I was feeling so emotional and had no firm diagnosis and knew nothing about lymphoma.

It’s RCHoP l’ll be having.

I do have a choice to make, 3 cycles and some radiotherapy, or 4 cycles with two more months of rituximab. The risk with the radiotherapy is permanent damage to my salivary glands as the tumour is in my nasal cavity.

Again if anyone has any advice in this that would be great, I don’t really know what to think?

With R-CHOP you will most likely lose your hair…… but it is a very effective treatment. 

Making choices is hard but as my journey is rather different I don’t have first hand experience with where it is presenting.

Although chemo can be unpleasant than radiotherapy you have to take post treatment ‘left over’ issues into account.

I had the big brother of R-CHOP (R-EPOCH) that was 6 cycles and a total of over 750hrs of treatment and honestly I did ok with it all (you can see my story in the link below)

I also had a total of 45 zaps of radiotherapy over my treatments with the first set if 5 zaps to a tennis ball size tumour above my right eye, I was told that there was a 50/50 chancer that I would lose sight in that eye but it was fine.

You may find this link Top Tips for the day of your Chemotherapy as you get ready for treatment.

Do you know the ‘exact’ name of your type of NHL?

((hugs))

I believe my consultant called it localised extra nodal DLBL non Hodgkins lymphoma.

Quite a mouthful!

It’s lucky I noticed it, I was having a very occasional and brief feeling of numbness in one spot on the roof of my mouth. Nothing else to see for a while, now I can feel a lump in that area but they say it’s still considered small.

Good that it was found quickly for some it can take years and is often found by accident while being investigated fir something else.

This links my fit your type Extranodal marginal zone lymphoma (also called MALT lymphoma)

You may also want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Thank you so much for all of your help. It’s really awesome that you give so much time to helping others here, it’s really invaluable. Have a lovely weekend

Little update, we explained to my daughter in simple terms this morning about the treatment I will have this week. She seemed fine and is now laughing at something on tv. I'm sure she will have questions as time goes on but I'm glad I waited until we had the full picture before telling her anything. Due to her young age and her autism that is. If that is of any help to anyone else in a similar position.

Good morning Flwffen and take a breath and another.

Now to get your head space into the position for going through treatment. Your R-CHOP will be done as a day outpatient but do expect the first days treatment to longer then the rest as they will take things slowly looking for any reactions, but these will be dealt with quickly.

I am always a little envious when people have R-CHOP as my treatment had me in hospital 6 days/5 nights but we do what we need to do.

Do check through the links I have given you especially Top Tips for the day of your Chemotherapy as this will help you plan for having your treatment..... it's one area that you can control....... the treatment side you cant.... you are just a passenger but trust in the teams as they will take great care of you.

And remember to have a notebook with you all the time as you often get told stuff so make lots of notes. Ensure you note down the contact name and number for your Cancer Nurse Specialist and the out of hours contact info for when you are concerned about anything........ and this group will always be around to help ...... and did what we have done over all my 23 years........ the back pages of our note book is where we put our dreams and plans for the post treatment life and I am happy to say that lots have already been achieved with lots more to look forward to achieving in the future ((hugs))