Hello!

Hi Charlie29736 and a warm welcome to this corner of the Community but I am sorry to hear about your mum’s diagnosis. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Going long periods of time without treatment often happens with lymphomas. Is there any immediate plan to start treatment?

A few questions to help us understand her circumstances so we can support you and your mum better……. How is she keeping? is she active? in she in any pain?

Always around to help more or just to chat ((hugs))

Hi Mike,

Thank you for the lovely warm welcome. My mum had only 2 rounds of intense chemo, then she became seriously ill with pneumonia, PCP and neturapenic sepsis. We almost lost her twice due to this. They have stopped treatment due to the truma to her body, she got discharged from hospital but 48 hours later she fell over at home and broke her hip and got admitted into a different hospital (long story short) her care there was disgusting (putting a complaint in) but because she has self-discharged herself she has no care plan. Her mental health has massively declined. She has mobilty issues and is in a lot of pain! I'm trying to find out how much help we can get because this is destroying my mum!

Thank you for listening Mike!

So sorry to hear that your mum had a bad time with her chemo…… I had the same problems developing Pneumonia and Neutropenic Sepsis  a few times but this was 11 months post my last treatment.

Very concerning to hear about the quality of care in the other hospital after her fall.

I am assuming that she will no longer have any chemo?

When her cancer was at stage 3 the chemo she had then she coped well with it but this chemo her body hasn't coped at all. We should be having a call with mums hemotology doctor soon, they haven't written mum off but mum has had enough of the poking and proding. She just wants to be comfortable now.

It will be interesting to hear what the Haematologist say……  but it is a balance between persevering with treatment and the problems that this may bring along……. and quality of life.

There are not many carers posted in the group lately but you may want to join and post in our dedicated general Carers only support group where you will connect with others navigating similar support challenges ((hugs))

At this moment of time she hasn't got a good quality of life. I have now joined! Thank you Mike, I appricate everything!

Hello Charlie29736 - what a rotten time you all have had and are having. Can I make some suggestions (as an ex-social worker some years out of practice), some of which you may have explored. If I was in your position, and in no particular order, I would contact your mum's GP to determine her exact medical status, your mum's local social services to get an assessment of needs (including finances) - and possible provision of direct/respite care; not forgetting a carer's assessmen and can be a source of family supportt. Re your mum's cancer"status", also talk to the clinical nurse specialist(s) attached to the unit where your mum was treated. These nurses are a brilliant link between consultants and patients and their families - the more knowledge you have the better - and they have tons of knowledge. In my 4 years of continuing experience, lovely caring supporting people. Cancer support charities in your area?

Family and friends hugs are a neccessity.

Hoping it works out well for you all, Pete  (and have a long distance hug) X

Hi Pete,

Thats only a small part which has been happening, my auntie (my mums sister) has stage 4 lung cancer and been told today that they are going to try everything but its looking like shes going to go down hill at any moment.

I have tried making contact with my mums GP and my mum has as well but trying to get a doctors appointment is silly! My mum waited an hour for a call back today and yesterday only to be told that all appointments are full. I finally spoke to someone today to get district nurses out to her, but now her address has changed which is an extra 10 mins away the doctors are telling her she needs to look for a new surgery - she has moved to this new address because its more accessible for her. I live 25 miles away from her and try and see her every other day as well as working full time doing 10 hour days. I am exploring every avenue I can and you don't understand how much this has helped!!

Thank you for your kindness (long distance hug back) x

Blimey - auntie as well- whoever invented cancer . . .  I feel for you- the pressures. Thanks for the hug- can't have too many.

If you have the name of the "new" GP surgery then I would contact the Clinical Nurse Specialist associated with your mum's treatment who may be able to smooth the transition. Do not forget your mum has an MP - no pun intended- but s/he runs surgeries usually at weekend. They often have researchers who can provide pressure to resolve problems. (And in my experience, social services respond pretty quickly to MP's letters). Don't be sensitive - us them and don't be fobbed off. Also if there are still problems with GP speak to the local  Clinical Commissioning Group - these groups commision primary care.

Hugs upon hugs

Pete X

When it rains, it pours! We only got told this evening so my mum is going to write them a letter but I will be looking for a new surgery as a back up! I will be going to mums local MP if it doesn't get sorted soon. The way she has been treated by recently is appualing! Her Hemotology dr and the ward she was on when she had pneumonia are/were absoutely incredible, they are amazing! But the last 2 weeks have been a disaster!

Hugs upon hugs!

Charlie x