Hi,
My sister has been diagnosed with stage 2 Hodking Lymphoma. She starts chemo on Monday, yep, just before Christmas. She is in good spirit and feeling super positive. She has a good support network at home, including a partner, three very close friends and my mum, who's 84 but willing and able to look after her (my mum was a nurse).
I live in another country and I am broken inside. I so desperately want to be there for her, with her. To cry, to laugh, to just be. Whatever she needs or wants. I want to be there.
But I have 2 small children here and I can be away from them 2 to 3 nights at the time, at a push. I have booked a flight home every month for the next 6 months to be with her for 3 nights/4 days to coincide with her chemo treatments but I would love to be able to do more. I can't get over the fact that she'll have to go through this without me. I can't drop everything and go. Or maybe I should?
Thank you for listening x
Hi Celine_Ca and a warm welcome to this corner of the Community although I am sorry to hear about your sister. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context, I have been on my journey since 1999 when at 44 when I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.…….. especially as I have had various treatment during both the Christmas and New Years period.
It’s good that she has a support network around her…… but you being in a different country just makes it hard for you to help out.
As for her treatment journey?.... if we line up 10 people on the same treatment for the same Lymphoma we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from Dec 2013 to late 2015 was rather complicated (See my story) but I am over 10 years out from my last treatment, I turned 70 last month and I doing great.
My main chemo was between Dec 2013 to May 2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........
Over the years I have talked with lots of folks who have had the same HL treatment as your sister and actually continued to work part time throughout…….. obviously others find it challenging.
Here are a few helpful links……
tips for buying gifts for someone with lymphoma
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
These are some of my simple tips……
Nausea may be a challenge, but remember she must not to suffer in silence as there are lots of tools available - but her team need to know how she is getting on as at times it is trial and error to get the right one.
I was only sick a few times during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.
Cancer-related fatigue may well build up over time so she needs to 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..... the less she does the longer the recovery.
There are signs everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years….. and the recovery after this is much longer.
There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.
But the effects of the chemo on growth areas and her general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when her immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo she has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in…….
This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in.
I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
Based on my long experience we were not hermits….. we went out……. our mental health is importantly to consider.
Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresher is a good healer…….
We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children.
We would open the windows and let some fresh air in, good hygiene control…… We did this all the way through my main 2 years treatment including 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) Stem Cell Transplants….. and I did not have one infection.
If you have any questions do ask them.
