A tough week

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A week of fear and hope, it’s ending more in fear then hope, after seeing my consultants registrar on the 29th Dec I felt hopeful things were going to start happening, now I know how wrong I was,  I was suppose to have a further CT scan the following week, then told it was cancelled due to the doctors strike, so waited another week then found out the registrar had not even passed any of the notes on, to anyone after our meeting on the 29th and that’s why I didn’t get the 2nd scan to see if my cancer had spread to my lungs, this weekend passed I was fatigued and in pain from the tumour I ended up having to be an out patient but spent the day in hospital having some test, turns out I have an infection in the bottom of my lungs and that’s what the pain them is not that the cancer as spread, that was positive news I thought, but then I have sprung on me I have been seeing the wrong consultants since the 29th and I have a new one that was discussed and sorted with an MDT group last week but nobody as informed me, I asked could I see my new consultant and was informed that he is on holiday for another week, they then gave me a prescription for a targeted antibiotic and discharged my at 6 o’clock my partner brought me home made some tea and went off to get the antibiotics only to be told it’s a white prescription and can only be issued in the hospital pharmacy, we ended up having call 111 because no hospital pharmacies were open, it was 8:30 by the time they called back and sorted it, my partner then had to get to the pharmacy before 9 when they shut she only just made it in time, stay positive I am told well while my partner was out getting the prescription I broke down and cried my heart out, I wanted to talk to my mum, I couldn’t because she died 18 months ago of cancer, I feel broke and empty and feel like I have lost faith in NHS and the team that is suppose to be going to help me, which ever team it is of course. What a roller coaster, just great full my family and partner are here for me. 

  • Hi Classic car,

    What a journey you have had it is bad enough waiting for scans and appointments, but to find out you have the wrong doctor, I know when we first find out we have cancer you are in turmoil and than having scans cancelled your brain gos into overdrive and you cannot help but think the worst, I am not surprised you broke down I bet you are at your wits end, I am so very glad you have your partner and family to support you, I hope you get answers soon try to stay calm I know it is hard but try to stay positive there is always the Macmillan help line you can call to answer any questions you may have and keep posting on this site we are all with you sending hugs and best wishes Sandy 

    Sandra 55
  • Hi Sandra, thank you, it is hard was given the news Dec 12th and since then nothing has been sorted other than they have said I will have my left kidney removed which is what the tumour has taken over, I have been told nothing else and despite lots of phone calls to the team who are suppose to be dealing with me I don’t feel anything is moving, I haven’t even got any faith in the NHS now, having gone through this since the begging of December,  I have to wait until next week to hear from the new consultants team and see what they are going to do, all the time I am suffering with fatigue and my mental state is changing. I am digging deep but it is so hard to keep positive, I guess I need to talk to MacMillan nurse or my doctor who I must say  has been fantastic in what she has been able to do for me, it’s a shame  she can’t be my consultant. 

  • Hi Classic car,

    Hang on in there when you get the right consultants on your case they will be able to explain everything to you, I was under two surgeons in the beginning well there was two of them one in St Richards hospital and one in Worthing Hospital they removed my left kidney and spleen in December 2019 than when it spread I was passed to an oncologist in Brighton as I had to go on immunotherapy and chemo, that was in May 2020 I am now on my fourth lot of treatment, I completely understand what you are going through I myself have up’s and downs but I find the worst thing is the waiting for scans, results and the consultant telling you the news, this is such a worrying time and all the time you are thinking the worst I have a scan every three months I am surprised I am not completely grey, well joking aside as long as I keep going  I know I must enjoy every minute I can sending hugs and best wishes Sandy 

    Sandra 55