My sons recent diagnosis

Hi  and welcome to this little corner of the Mac Community. I am Mike Thehighlander and I help out around our blood cancer groups.

So sorry to hear about your sons HL diagnosis. The first thing is everyone will have a completely different journey.... some relatively smooth others rather bumpy..... but even in the hard times it is all do-able.

I actually was diagnosed with a rare Non Hodgkin’s Lymphoma way back in 1999 and for me it was a journey of challenges and celebrations.

Do you know what treatment he is having?.... but most likely AVBD?

My treatment were slightly different and very long but on the whole I was not very ill..... some challenges will come along but these can be overcome and in reality are only for a short time in comparison with the lifetime that sits on the other side of treatment.

I am sure that some of the HL folks will be along with their stories and you can look at some members stories if you hit their community names.

I will always recommend that when you embark on a treatment journey read the information provided by your team and also on recognised Cancer Support Charities like Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service

The treatment information can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all bad.

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

Always around to talk more.

Hello Mike,

thank you for the support.

Your story and journey is phenomenal and huge hugs for being such a warrior.

It’s the doable factor that is the shining light. Hearing you and others talk about the journey and that despite its various different factors, the common denominator is positivity and the will to get through it.

my son has started doing blogs which is helping him and us as a family.

I shall look at the links you’ve posted as all info is helping my mindset.

Thank you again.

Sending love

Hi again, of all the things to ‘get’ quickly is blood cancers like HL are very treatable with great results, yes some challenges and some folks do take some detours to get to remission but as I said  - all do-able.

The word cancer catches the attention and the initial reaction is panic and fear.... But unlike solid tumour cancers like Breast, Lung, Kidneys...... blood cancers are totally different animal.

Even the stage numbers take on a completely different meaning... I was stage 4a..... but that made no real difference to the outcomes, all it did was pinpoint where my cancer was presenting and helped my team select the best treatment for my presentation....... in solid tumour cancers stage 4 very often does not have happy endings.

Try to get to understand the disease, Lymphoma Actions info is very good as doing this helps reduce the noise between your ears. I would also recommend you or your some to start a daily diary recoding everything that is going on, feeling, challenges.... side effects when in treatment and these then turn into questions that can be asked at appointments or when at hospital on treatments.

Always around to help and chat

Thank you again.

This has helped a lot, particularly in your explanation of the stages.

His treatment starts on the 20th next week.

Positive foot forward :) 

Do you know the name of the treatment he is going to be having as this can help connect with others who have walked that road.

Yes it’s ABVD.

I’ve read the many side effects and hope he’s not hit with all of them as they sound quite intense.

Take each day as it comes.

Thanks Mike 

Thanks for telling us this. Over the years I have talked many people in this community and also at our local Maggie’s Centre Heamatology Support Group.... and honestly, the difference in individual experiences with having ABVD is very different..... I don’t think I have talked with anyone who had ALL the symptoms but more a pick and mix of symptoms and often different across cycles.

I think once he gets the first cycle done he and importantly you and the family will start to get some control of the whirlwind in your heads..... 

You’re right there.. the whirlwind couldn’t be  more accurate! 

I look forward to taking back a bit of control over “said” whirlwind :) 

ABVD is the chemotherapy I've been receiving and one of the symptoms I get is an awful taste in my mouth and wish id known this before but if you don't eat too close to the time you start chemo then the quicker this taste seems to go away. Also, I found the best thing to do is not push yourself in the first few days after even if you don't feel too unwell because I seem to end up suffering the consequences of feeling worse for days after. So tell him to take it easy but honestly the more chemo you have the more one understands how they react and what's the best things to do for them. 

Thank you Jess

I will pass your words on.

I send you all the positive vibes that you’ll be well soon xxx