At the minute, I feel like I'm on another planet. I myself am a mother of 3 but am an only child. My mum is 3 weeks into a hospital stay after finding a lump in her arm pit approx 10 weeks ago. I understand that lymphoma is hard to diagnose. I'm just finding it hard to find someone else that understands what it's like to be the one who holds the family together when there's no one else to share these feelings with. That sounds so blooming selfish!! I'm not selfish at all! Just looking for similar peeps that can share the experience of being an only child amongst this crap. I don't want to burden my kids coz I need to be there for them when they need me. If there are any groups ppl can advise me on I'd be truly grateful.
Hi Kezzbag and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your mum’s ongoing Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different from your mum’s I most definitely appreciate the challenges of this journey rather well….. but I am now 9+ years out from my last treatment, I turn 70 at the end of this year and am living a great life….. Lymphoma can be treated.
Yes the Diagnosis of Lymphoma can at times very very complicated…… back in 1999 when I started my journey it took a full year, a few CTs and 6 biopsies to diagnose my type….. thankfully things have improved since then……. But it’s not unusual for a diagnosis to take weeks…… my second type to 8 weeks to diagnose.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support from patients and family members.
As the treatment approaches to many of the different Lymphomas are not exactly the same it’s best not to jump into a group until she has a clear diagnosis as you will end up going down the wrong rabbit trail…
We do have our General Cancer……
……. support group where you will connect with a wide range of community members navigating the exact same support challenges…… but you may not connect with many people who are dealing with a family member with Lymphoma.
Once you know her clear diagnosis do join the correct Lymphoma group and put up a post but I will always be here in this thread to help you out ((hugs))
Hey Mike/ The Highlander. (Love that movie! Especially the soundtrack) Thankyou. I'm sorry its taken ages for me to reply but just reading ur reply has already given me a boost although its a little bit bitter sweet right now. I'm so thankful that you explained to me a timeline for a proper diagnosis. No one else has done that. I'm sorry you had to wait such a long time but thankful for ur input. Truly.
My mum has started chemo for stage 4 high grade lymphoma. It's attached to her stomach and kidneys as high grade but has low grade also. Chemo started on Thursday. Last night her potassium went really high and she was treated quite aggressively but today her levels are normal. I understand that it's a reaction from chemo. They have explained that they haven't got the results bk from her biopsy in full but as they know it's aggressive they had to do something and her treatment will probably be tweaked.
Thankyou once again. Just knowing there's a voice somewhere is a great comfort. Wishing you nothing but positive energy. Thankyou.
Good morning Kezzbag so you must have been awake during the night……. or you are not in the UK?
Highlander is great film with a wonderful cast and music score.
I am glad that my post cut through some of the mist that comes down when you enter a Lymphoma journey….
Starting chemo before a clear diagnosis is in place often happens, especially if fast growing High-grade non-Hodgkin lymphoma is suspected…… I was the same in late 2013.
There are a few different types of High- Grade NHLs but you could look at joining the……
General Non Hodgkin's Lymphoma
…… support group and put up a post and introduce yourself to the group if you want.
At this very early stage it is VERY VERY important to understand that the Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.
I was stage 4a with my second type of NHL back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
Your mum’s body is now a massive chemical set…. so lots of interaction will happen like the potassium issue….. this us all normal but this is why regular blood tests are done to monitor what is going on and where required action can be taken.
I assume she is in hospital at the moment?
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time she needs keep some activity going as this does actually help overcome some of the fatigue..... the less she does the longer the recovery. So getting up, having a shower, getting dressed…… having small walk will help.
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 her well hydrated….. and in turn means she has to go to the toilet more often so this is exercise
You will most likely feel this being rather overwhelming but once things start to work the noise between your ears will call down…… have a look at these links as they may give you some ideas as to what will help your mum and indeed help you to support her….
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
These treatment work very quickly so you may find improvements appearing….. you can see from my story (LINK) that the change in my growth area changed in the matter of hours.
You may need a little encouragement at the moment……. so our daughters were 14 and 18 when I was first diagnosed……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters…… this battle can be won.
Always around to chat and answer questions ((hugs))
Thankyou. Truly. I will look at the group you suggested. I hope some day I can pass your kindness onto someone who's in my shoes. Thankyou x
Hi again Kezzbag do please put up a post and introduce your self to the….
General Non Hodgkin's Lymphoma
….. support group, do also tell us what exact type of NHL your mum has and what treatments she is having as this helps us to help you better.
((Hugs))
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