What do I do? Long read sorry

So where do I start... 

Since about October last year mum was complaining for back and stomach ache just below the bra line and went to the doctor.. over the next few months mum would repeatily go back and fourth to the gp with same problems that the pain just wasn't getting better, mum would be given Busopan for ibs(there was a change to bowels) given Nitrofintoen mr for recurring water infections, paracetamol codeine or co-codamol around Feb mum could no longer wear her bra because it was hurting and this was told to Gp. There was mention that it was Gall bladder issue or panceterous(spelling sorry) altra-sound scan checked Kidney and the other areas apparently no issues. Pain in is now getting worse, trouble is Gp surgery never have appointments you get different doctors or they put you in with nurse particioner. Go over the symptoms again and again full blood count done shown red blood cells raised but told not to worry. Returned visits to GP right up till June finally a x-ray is requested appartently shows some issues with arthritis and maybe a bone density problem... mum starts to complain of funny feeling in legs like the start going numb. Myself and my sister put conplaint in to GP this just isn't right my mum needs more or better pain relief. 28th June mum is admitted to Rochdale hospital over night, she is told that nothing showing on bloods that this is constipation and bloating will requesting ct scan will say to get it fast possible malignant going on very unlikely. As leaving the hospital mum complains left leg is dragging and that there is a lot more pain, told to wait for c.t to come back 15th July to discuss. The days ticked on there was no scan date and mum had now lost movement to be able to walk unaided. I phoned and phoned trying to get a scan  sooner luckily i managed to get a cancellation for 6th of July. The lady advised that after scan result should be with doctor within 24 hours. From there mum just kept getting worse. We went back to Gp on Tuesday last week 9th July Gp was told think mum should be in hospital he said that he was confused about mum and he would arrange bone density scan maybe mri to gave her robaxin and amitriptyline said it was nerves and x-ray showed arthritis so was most likely that. I questioned weakness he said it would get better. But he did advise if it got worse by numbness in between bum and vigina that we should go to hospital... 

Thursday 11th July mum fell couldn't put any weight on left I worried it was a cord compression and rushed her to hospital... urgent care assesst mum did some tests I said cord compression he laughed in my face and told me he would be in touch with Salford royal if it was cord compression and it was constipation and sent her home on movicol.....

Thursday 11th July my dad called to say mum had lost all feeling in left leg... I phoned ambulabce....

Oldham Royal hospital A&E started to have argument with ct scan department they needed the results....

5.am 12th July.... the worst news   ... it is Kidney Cancer which has moved to the spine causing Cord compression ... this is now urgent to stop mum from being paraslysed perminatily 

Saturday 13th July transferred to Salford Royal spinal unit. Cancer in Kidney moved to c9 c10 c11 and c12 c9 has massive growth causing cord compression operation needed...

Operation happens Monday 15th to embilise the bleeding.. Cancer has large blood supply ... Operation unsucessful only managed to embilise some of the bleeding... Operation now not able to go ahead to remove tumour as the risks are to great. There may not be time to get bisopsy as they are now wanting to just start treatment they now think that it is in kidney the spine and possibly ovaries and uterus 

Mum will never walk again, and we don't know how long we have her for will this be treated I don't know we haven't even seen someone to discuss the Cancer yet is that normal?

I feel my mum has been failed by so many people is this what normally happens so many gp visits to someone who never visited and was fit and well and was even working up until 2 weeks ago.

I feel lost what if they gp surgery has robbed us of time what do I do?

  • Hi Gillian, what a sorry tale indeed. Wish I was nearer to give u a big hug.

    I'm just a member., albeit a fellow Northerner, exiled to the South.

    There are so many things any of us with kidney cancer could say in response to your post, but I think a Community champion can probably  answer things better. S/he will no doubt be in touch shortly.

    There are a number of treatment available now for kidney cancer, mostly tablets, which a few of us have been on for years. They do have side effects I'll admit, but they do often prevent the cancer from growing more or somewhere else.

    Apparently kidney cancer is indolent(as opposed to aggressive)

    You might want to ring the helpline on 0808 808 0000 to ask a nurse for  more info.

    Meantime u might  want to join the Family and friends group as well as this one?

    Big hugs

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Altho u might  not want any more medical info, the helpline can also offer u emotional support. You can email them as well. See link below.

    https://www.macmillan.org.uk/about-us/contact-us/ask-macmillan-form.html

    Best wishes xx

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • The helpline can also give emotional support. If u don't want to phone them, u can email instead 

    www.macmillan.org.uk/.../ask-macmillan-form.html

    Sorry, posted twice by mistake

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Oh Gillianh85 my lovely, what an awful time you all have had to go through, my heart goes out to you and your mum. I’m no help here only to say give the Macmillan nurses a phone call, I did just after my husband had his kidney out,  they were so helpful and took all the time to talk to you, no rush or anything like that,  please phone them. Hoping you all have better news soon xx

    Sue Xx
  • I am so so sorry :( it sounds like your mum was failed numerous times by health professionals :( x please don’t let that take over right now though, there will be time to address that after the plan for your mum is in place x Have they mentioned giving your mum any radiotherapy on her spine at all? Is she still in salford hospital? Please do use the support line, I can imagine your head is everywhere right now x wish there was more ways we could help CryCry

  • Doctors been in today and it looks like she will be going to a local Christie hospital we believe within a day or soon. They have also said maybe they will fit her with a brace for her back she won't walk again tho 

  • I’m at the Christie tomorrow with my dad, I can honestly say throughout my dad’s journey they have been amazing x they are very knowledgeable and if anything can be done to help I know they will try x Dr Waddle is my dad’s Oncologist / Kidney cancer doctor there, have they managed to give your mum something for the pain? X