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 ,

    I'm so sorry to hear that your mum has been bounced around between different doctors and services without getting any of the help she needed.

    I see that your mum has now been referred on to the Christie which has a reputation of being one of the best cancer specialist hospitals in the country so hopefully you will start to get some answers soon.

    As the cancer has progressed beyond the kidney into the spine it will be classed as incurable but this does not mean that there is no possibility of treatment.  The treatment I am on is a biological therapy which can reduce the amount of blood supply going to the tumour and prevent it growing new blood vessels.  This can reduce the size of the tumour but not completely kill it.  There are also immunotherapy treatments which make the cancer cells, which are usually ignored by your immune system visible to it and them gives your immune system a boost to attack the tumour.  Again it cannot completely kill the tumour but can reduce the size of it.  Some types of kidney cancer can also respond to chemo and radio therapy.  The Christie will also be able to advise you if your mum meets any of the criteria for any trials that are running so your mum may have other options available to her as well.

    I think calling the Macmillan helpline on 0808 808 00 00 would be a really good idea.  They are very good at helping you sort out your thoughts but also helping with the practicalities.  They can also advise you how to best apply for a Macmillan nurse to be allocated to your mum.

    There is also a Maggie's centre based at the Christie click here for their website, and although I have not been personally I hear that they are really good.  They are there for both the patient and their family and will know what can be available for you in your area and the hospital.

    One of the things I find when I am worried and upset is that I have loads of questions going around in my head and find it difficult to get a break from them.  What I finds helps me is writing them down so that I don't have to keep trying to remember them all but also so that I have them available when I do finally meet someone who might be able to answer them.  You might want to do this with your mum as well as she will undoubtedly have the same sorts of questions going through her head.  When I was first told that I was incurable I was all over the place to start with and it only started to get better when I knew what the plan was.

    I agree with Daddiosdaughter that the main issue is your mums current care and treatment but I would suggest that you write two lists, one about what happens now regarding your mums care.  This can be both the medical and practical aspects.  However, as they will be on your mind anyway you might as well write down (as you have done above) your mums recent medical history and the questions that you have about this.  When you finally feel able to deal with this you will then be able to go back to these notes and decide what you want to do.

    There is a lot of support available to you here on this site and lots of different experiences.  It is quite good at answering specific questions and very good at being supportive and encouraging as everyone here has been through at least a part of what you are describing.

    I hope that you get some answers from your mum's oncologist soon.

    Wishing you and your family all the best,

    love and hugs,

    Gragon xx 

  • No pain relief yet apart from paracetamol and codiene however this has meant she can't move her bowels for 2 weeks now

  • :( thats going to make her even more uncomfortable, my dad ended up not having a bowel movement for over 16 days and needed enema's as well as three different types of laxatives a day x Has she been moved over to the Christie now? How are you holding up? You can always private message me if you would like to talk x

  • Wow yesterday was a whirl wind.. I must tell you all I'm 34 and this feels like I know nothing in this world.

    So couple doctors had argument about what was best for Mum anyway we went to Christie they had to do a new ct scan gave her couple tattoos and gave her a really big blast of radiotherapy the did it on c8 all the way down to L1 now this is to hopefully stop the growth just in the spine and try and get some movement back in the legs which is unlikely.

    I need to ask some questions ... something that was said to me yesterday when mum was away....

    Your mum might not be well enough for biopsy my mum looks fine to me what do they mean? They said they might not find the primary and without the primary chemo can't start... They may do the biopsy and mum might not be well enough for chemo I don't understand this are they telling me that 6 days ago we were told it's cancer and in less than a week that they are telling me I'm lossing my mum 

    We haven't been given an oncologist yet we don't know what we are dealing with they think it's all come from the kidney

    Will my mum survive this or I'm I going to be planing the worst possible and she won't be here

    It's the not knowing that is getting me. I need to know we have time there is so much I need to do with my mum. She at 56 will be 40 years married next month. We have a massive family holiday in October will she be here for these. 

    Mum is back in Salford we just spent all day there 

    G

  • Do join the Family and friends group. Sorry if I've said this already. Been awake too long n v tired.

    Do what u can with your mum now n say what u want to say to her  U cannot tell how much time u have with her. The doctors cannot  tell u that either. Nobody can tbh.

    I believe giving somebody an " end date", as it were, can b self- fulfilling. That's why I've never asked. But that's my personal take on cancer.

    Some of your questions are best put to the helpline ( ask a nurse) rather than this group. When do you next go the Christie with your mum? The questions want asking of the docs there, who said those things to u while your mum wasn't there. Meantime the helpline may well put your mind at ease or at least calm the whirlwind down a bit. It's exhausting just reading your post so I can't really imagine how u feel !

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hi ,

    It is several hours since you posted so hopefully you have got some answers and maybe a bit more rest.

    I'm afraid I can't answer a lot of your questions and you really need to push to get a person you can consult with at the hospital as they will have access to the file and hopefully some knowledge and understanding of the discussions.

    If they cannot find the primary and have not taken a biopsy I am not clear how they know it is kidney cancer.  However, presuming that they are correct in that it is kidney cancer but they have not got a biopsy then they are unlikely to know which type of kidney cancer.  Most kidney cancers are Renal Clear Cell Carcinoma (RCC) but about 20 to 25% are different types.  Treatments can vary depending upon which type of kidney cancer it is.

    Having had RT on her spine I can imagine that she will be very sore for a while but I don't know why she might not be well enough for a biopsy.  You would need the doctors to clarify this.

    It is impossible for anyone to say how long your mum might have as there are always so many factors involved..  There are people all over this site who have been given weeks to live and are still here years later, my mum was in hospital but doing quite well and at her insistence we went on our holiday only for her to die on the night we got back two weeks later.  Anything the doctors say about a prognosis is just a best guess based on their personal experience.

    It is a very difficult time and I know that you want facts and things to be definite but unfortunately few things are certain at the start of this process.  As you said in your post even the doctors are not yet in full agreement about what the situation is and what needs to be done.  Write your questions down so that you don't forget them but don't keep going in circles trying to remember them, find someone that you can talk to on your mum's team and make sure your mum is happy for you to talk to them and for them to talk to you.  Let them know your concerns and your questions.

    Again I would suggest you contact either the Macmillan helpline or the Maggie's centre for some support and they may be able to offer you some additional advice.

    How is your mum doing in all of this?

    All the best,

    Gragon x

  • Thank you for all your replies.

    Yesterday nothing happened they tried to fit mum with a brace, they did this in the laying position so it really hurt her they was meant to be doing an x-ray with it on but couldn't.

    Salford hospital spine unit have now said she is not a spine patient with them now because there is nothing that can be done for the spine so mum will be going to a Christie unit either Oldham or Manchester hopefully this might be a step closure to home.

    I haven't thought any more about time and yesterday we really tried to stay positive and didn't have any upsetting talk mum needs us strong.

    We still haven't spoke with a cancer specialist because she is not on there ward it's really annoying but understandable.

    We were told yesterday the paraylised legs even after rt won't get better so how we have my mum is what we have.

  • Good Morning ,

    I'm pleased to hear that you are starting to find out a bit more about the plans for your mum as any knowledge helps you to cope.

    If an oncologist has been appointed to your mum's case then although you have not seen her yet you may now be able to arrange to do so.  You should be able to get a phone number for her secretary and ring up and ask when you will be able to meet her with your mum to discuss what is going on.

    I hope that you get to know a bit more about what is going on soon.

    love and hugs,

    Gragon x

  • Hi

    My heart goes out to you all with so much uncertainty. It sounds like being moved back to Christie is a positive step as far as the cancer is concerned and finding out what the next steps are to be.

    In the past I came out of an appointment and realised immediately that I hadn't asked pertinent questions. We have a Macmillan unit at out hospital and I went straight there - they called my consultant and he made time to see me again quickly. Just enough for me to ask what I needed to ask and that helped enormously.

    I think once you're in oncology it's much easier to navigate your questions. I have two specialist nurses who I can call or e-mail at any point in time and they'll always respond. They are my go to people for information and they'll get me in front of my oncologist (metaphorically speaking) immediately if they feel it is necessary. I've had a couple of scans / xrays done purely as a result of e-mails and attached photos without even having to have an interim oncology appointment.

    As Gragon says - write down everything that you think of as you think of it and take the list with you to the next appointment - and go through it with them methodically - and write down the answers too.

    If your Mum is coming home, get social services involved asap to make modifications to the house so that it is accessible to her. 

    I really hope you get a clearer picture very soon.

    Jo
    x
  • It's been a few days since I've been intouch what has happened... well I'll try and explain

    Mum is still waiting to be transferred to a new hospital for over a week it's not happening as yet not sure why.

    We needed answers and the Macmillan team have helped.

    Palliative care has come in firstly told my mum that it isn't curible I think we already guessed this

    ................... yesterday they told mum to start making plans

    Today 26th July we finally meet with a cancer doctor to find out what is going on.. will they be giving any form of treatment. The pain is better managed at the moment.

    I feel broken... Mum and Dad have no savings and don't own their own home they work full time although not now. We have been advised they are not available to have benefits so I don't know what we can do.

    We just want to bring mum home and no-one is mentioning it .... will they make this happen