My mum has lymphona and found out last july but still no treatment! She is deteriorated and is in hospital last night as she keeps having funny turns where her body goes numb and she goes boiling hot with instand bad head, this lasted all yesterday and she still wasnt mobile by time i left hospital at 11 last night. She has extream fatigue. We are waiting for lung biopsy as they are uncertain if she has lung cancer too or if lyphona has spread to lung and they have been messing about doing biopsies and getting no where but in mean time my mum is 70% worse and i dont know what to do. They were trying to fob us off yesterday saying its migraine or then said flu yet no cold or anything. She normally has thease episodes but the last two have been different she said and i honestly thought she had a stroke when i got to her yesterday but it wasn’t the case.
What can we do we need this diagnosis quickly and need her on treatment as i know its the cancer causing this and she lives alone.
Please any advice is much appreciated
Kerry, i hope you get some answers from this hospital stay for your mum. It sounds like a lot is going on but that suggestions of things like lung biopsy are being made. You say your mum was diagnosed with lymphoma last july but no treatment has started - were you under the impression it was due to? Some diagnoses are not automatically followed by treatment but instead enter a phase of ‘watch and wait’ where clinical decisions are made that don’t require treatment. It is very hard to get your head around when you know someone has cancer. Sounds to me like you have a host of concerns that your mums cancer has caused these current issues so i hope shes in the right place with all being considered and looked at. It can be hard to feel not listened to, to not see the action we think needs taken and even harder to accept that, usually, the drs are looking ay everything to work out next steps. Write down your qts, ask for Haematology to see her, speak to dr on charge of her on the ward and i hope there are answers or more info at least soon. Take care of yourself too - its very hard on those of us who care
Good morning @Kerrybeaumont and welcome to the forum.
I can hear the frustration and worry in your post. There is so much uncertainty when waiting for results and investigations, when all we want is answers and to know the next steps - especially if you mum feels so poorly. It must be really hard for you to see your mum so unwell.
The Support line is open today - 0808 2080 888 - from 10-4pm and I wonder if it may be worth you giving them a ring before your next visit? They may be able to help with your questions and support in giving you some help on what to ask your mum’s team. I have also copied in @LauranBloodCancerUK and @GemmaBloodCancerUK, our Blood Cancer UK nurses as well.
Please keep us updated on how you, and your mum are doing X
Hi @Kerrybeaumont, thank you for taking the time to share this and I’m so sorry to hear what your mum has been going through recently. I can only imagine how hard this must be for you, and for you to see her so unwell. Would you like to speak with a member of our Support Team? As Nichola said, our number is 0808 2080 888. I am here until 1pm today, and our Nurse Advisors will be back in from tomorrow (we are open 10am to 4pm the rest of this working week and 10am to 1pm on Saturday). We’d be happy to support you however we can.
May I ask, Kerry, whether your mum was discharged from hospital or if she is still admitted? Do you have a contact number for her haematology team that you might be able to call to share your concerns and questions? If she is currently in hospital, the ward team should ideally liaise with her haematology team. If you’re finding it difficult to get in touch with her team or get the support you need, it may be worth escalating to the Patient Advice and Liaison (or PALS) service at the hospital.
Please don’t hesitate to reach out to us if you’d like a bit of support around this, Kerry. We are thinking of you.
Best wishes,
Tanya.
Hi @Kerrybeaumont I am so glad that you have found us.
I am also glad that your mum is in hospital because she is in the right place to have different tests to diagnose or rule out different conditions, there also appear to be a lot of Covid/flu/infections and bugs about.
Everyone has given you brilliant thoughts, but obviously I can understand your fears, anxiety and frustrations, you probably feel completely powerless.
Also most tests take time to get results and obviously the Bank Holidays will not help.
Perhaps write down your fears and questions and it is fine to ask for other specialists that your mum is under to be involved.
I find it useful to write down each of my symptoms, their frequency, their severity and impact on my life, patterns etc. Also stress that your mum lives alone.
Obviously all this is with your mum’s permission.
I and my employers also could not get our heads round me being monitored and not being treated straight away, yes, this is commonly called watch and wait or active monitoring.
I hope by this time you might know more.
It is really important that you also look after yourself and please keep posting.
Take lots of care
Hi, i finally feel like im getting somewhere. Mum is now on respiratory unit and nurse on the ward said they will probably do the lung biopsy to see if its lung and lymphona cancer or lymphona cancer thats spread to her lung as a secondary. We have been told that the cancer has progressed since last scan as they have done a full body scan today.
Just hope she gets all tests done needed for treatment. She’s on right ward to get them done by the sounds of it .
Thankyou so much for support
Show quoted text
I’m really glad she is now in the right place and you definitely sound happier about what is happening which is really good to hear.
Please keep us updated on how your mum is doing, and yourself X
Hi @Kerrybeaumont just reading your message and I can feel the relief coming from it.
Please do keep us updated.
The really important thing is that you look after yourself too.
Take lots of care