Dealing with "The Family"

Hi again HelzBelz231 and first a ((hug))........

Oh the Lymphoma journey both as a patient and a family member is hard enough but each journey is rather different.

The one in the bed.... your mum, is a passenger in all this and her trust needs to be fully in her clinical team..... and the journey may need to get more challenging before she sees improvements........ so she is in the storm.

You and the family are all in a different position as in reality you are all standing on the outside looking in - like being in the eye of the storm so not experiencing the challenges..... and having no first hand experience means that there is a lack of what is right for your mum......... this unfortunately can lead to some family members having differing opinions, often strong - as to how this 'should' be done...... but unless they are in any way qualified in the area of Hematology or have been in the bed as a Lymphoma patient they actually have no idea.

The most important thing at the moment is ensuring your mum is getting unified support from the family...... if it's not unified she most likely will pick up on this........ and this 'could' actually have a negative effect on how well she can deal with this unwanted journey.

I have been on this journey for over 25 years (See my story LINK) and my wife, 2 daughters and all the other family members were very careful to be in agreement and to trust my various medical teams to do the best for me...... and at the same time ensure that I was being supported. 

What your mum needs is some stability from you all.......... if she has any grandchildren she needs lots of hand drawn picture and ((hugs)) be it in person (infections allowing) or virtual.

This link has some Top tips for family, friends and carers...... this is taken from the Lymphoma Action website.

Lymphoma Action have various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey..... and there are a few Monthly Online (Zoom) Support Groups for Family and Caregivers.

((hugs))

I couldn't have said it better Highlander

Hmm, unfortunately trust in the clinical team is not high. Mum was first taken poorly in August of last year and the delay in diagnosis is down to them keeping her on steroids to treat a 'mystery inflammation' since then. The neuro surgeon who did the brain biopsy and gave us the results already told us this would be life limiting, yet the Haematologist came bouncing in saying "we are treating to cure". When I asked for clarification on this, he didn't even know Mum had been unwell for 5 months already! The Consultant who explained the MATRix regime didn't know that a botched hysterectomy 30 years ago had left her with only 1 fully functioning kidney and merrily explained the high toxicity risks of Methtrexate and how it was mitigated by the fact that we have 2 kidneys! Today they sent her off for an MRI scan, forgetting that she still has metal clips in her head from the biopsy!

As for the 'family' pulling together...like I said I can't go into the history, but that will never happen. My Mum's siblings believe I am selfish and controlling and will argue with me over everything, even though I have only done what my Mum has asked of me. Mum started treatment yesterday and has already been stopped due to a chest infection, so when I reminded people not to visit if they have the slightest temperature, sore throat, cough, dicky tummy etc I got told to stop trying to push everyone away and control who can see Mum. The grandchildren, my children, are all adults with their own lives and their relationships with my Mum are not straightforward either, due to choices she made in their childhoods.

Good morning HelzBelz231 ..... first how is your mum?....... in reality it should be all about her but 'stuff' can tend to deflect from the main purpose at times.

Not good experiences with regards to her various medical teams then.......!! Unfortunately this is not that unusual....... a lot of people will say "..oh it's all down to the pressures on the NHS".......... I personally had to deal with staff 'issues' and other 'stuff' over all my 25 years so nothing much has changed.

I am very fortunate that I have not had any family issues to deal with...... this is just making a stressful time more so both for your mum and you.

When in treatment protecting her from infection is a very real need....... as her immune system will plummet and a small runny nose to a health person is an opencdoor for Pneumonia and Neutropenic Sepsis with your mum.

It is all to do with what your mum's wants........ have you Lasting Power of Attorney in place for her?

I think talking with others who are navigating the challenges of caring would help you.

Do check out the Lymphoma Action Support Platforms especially the Monthly Online (Zoom) Support Groups for Family and Caregivers.

On this platform we do have our general.......

     Carers only 

……. support group where you will connect with a wide range of members navigating the exact same support challenges.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

I do hope that they get her chest infection cleared up soon and get her back on treatment.((hugs))