Advice plz !!

Hello - what an awful predicament to be in. As I don't know where you live and the resources that are around, this is a scattergun reply. and in no particular order of potential effectiveness.

Contact the "cancer treatment hospital" (I make no assumptions but!) ask for haemetology department and the specialist nurses (often Macmillan nurses). these act as liaison/support to individuals and families and ask their advice. Never, when talking to professionals, get fobbed off with "no" - always follow-up with "what do you advise I should do next?" They must answer.

Every hospital has a PALS setup. Patient Advice and Liaison Service  (The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. - NHS). Tell them your situation and again ask for advice.

Contact your MP - organisations have protocols - response times etc -  to respond to MP's letters. Don't worry that you might upset professionals- tough- you must concentrate on you until you get answers. It is my experience that the vast majority of preofessionals are on your side and want to do a good job for you but there can be slip-ups as you know.

Is there a cancer voluntary organsisation (Maggies?) accessible to you? Go along- you might feel uncomfortable at first but they can be a great source of support and information and might be able to work the system on your behalf.

Speak with family/friends and share (and hugs- hugs are good). Take one person along to meetings - insist.

Lymphoma Action  is an excellent voluntary organisation offering information and support- they run a wide variety of services- buddy system, gsupport groups for individuals and families- look 'em up.

I'm sorry I can't be of more use- a diagnosis is the key to unlock the next phase of your life. And if/when offered treatment, I bet you will be in a service that is on your side - they are lovely people.

Finally, we're here for you.

All the best,

Pete (and a long distance hug)

Hi Gpj71 and welcome to this corner of the community. I am Mike and I help out around our varios Lymphoma groups as well as the wider Community. I am so sorry to hear about the journey you are on and I can appreciate why you are so anxious.

The first thing you need to do is call your GP surgery and get them to follow up on your radiology referral..... the system does have holes in it so at times you do need to be your own advocate. Call them and find out what is happening.

The fact that you have joined this specific group suggests that you have most likely been researching your symptoms..... or has your GP said anything specific?.

On the face of it your symptoms do suggest Lymphoma....... but having talked with many people over the years on this and another support platform - your symptoms could also be due to something completely different.

It sounds like you GP is taking you seriously and is doing the first line investigations that they need to do. Once these jigsaw pieces are put together things will be clearer and referrals to suitable departments can be done. 

Macmillan have many support services so do check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support or just a listening ear. 

As always this group is hear to help at any time.

Hi thank you for the reply. The doctor is absolutely doing the right thing ....however she is treating the lumps in my throat as an early symptom and requested the chest x-ray to see if it has spread....my major problem is that it started in my left groin and has progressed up into my right hip, spleen area ,then into my chest and the sore throat was my latest symptom along with massive weight loss night sweats ....it's easier to say the only symptom I haven't got is nausea .....I'm in constant pain that rotates around my body shortness of breath lightheadness....and I can't any pain relief or professional care as nothing has been diagnosed.....my biggest worry is not that it's not curable ....it's that the pain I'm in is getting worse everyday and all I've got is paracetamol....hope this clears up why I'm so concerned

Thank you so much...there is a Maggie's close to me so I will pop in for a chat....I have replied to a later post with about more info on why I'm concerned.  Safe to say the last 4 days have not been good .

I can totally understand why you are concerned  and this is why you will have to keep working with…… pushing your GP to get a clear picture making sure that your GP knows everything that is going on especially the pain you are in.

Clearly communication is important. I always advise that in the early days of the diagnosis process it’s important to keep a very accurate diary/journal.

Where you are recording:

dates of appointments

information about communications especially around not receiving appointments/referrals (this happen a lot for me in the early days)’

symptoms with dates/times

pain levels from 1-10 with dates/tines

the amount of pain control with dates/tined

…….as this will help your GP get a clear picture of what is going on with you and your body.

So tomorrow you get on the phone and get your pointy elbows into the system and insist that your appointments are sorted out….. so ring Radiotherapy to ask why they had not called you back!…… ring your GP practice to get them on their toes……. you just need to push the system.

If it is Lymphoma the Diagnosis of Lymphoma requires a few steps/tests to be done and with this information collected this can be moved forward to get that diagnosis.

You said in your other reply that there is a Maggie's Centre near you, do go in and talk with one of the support team as these folks are amazing.and they will be able to help you navigate this challenge time….. the Maggie’s in Inverness where I stay are great and have been a great support to me and my family.