Not again!!

  • 25 replies
  • 53 subscribers
  • 3644 views

No, no, no. 

On Friday 9th July I had bloods taken and by 5pm I had a phone call from the doctor's to tell me that I was neutropenic and to be careful as regards infection and to wash my hands often etc. This is particularly important because I recently spent 10 days in hospital with a chest infection. I spent those 10 days receiving strong antibiotics 4 times a day. I was also asked to have the same blood test repeated the following Friday 16th of July.

So on 16th July I had bloods taken and by the end of the day I didn't have a phone call telling me I was neutropenic. That was great because on Monday 12th of July I was to go to my daughter's in Cambridgeshire. Therefore on the 12th of July Mrs Tvman and I went to the airport and flew to Stansted airport and got the train to Peterborough. 

In Northern Ireland the 12th and 13th of July are bank holidays because they're the two biggest days of the marching season. On Wednesday 14th July late afternoon my phone rang and it was my doctor's receptionist. She delivered the news I did not want and had I been told the figures that I was being given, I probably wouldn't have made the journey because they were bad, very bad. My neutrophils count was 0.79 and my haemaglobin was 89. Both those figures are the second worst I have ever had. In fact, the time my haemaglobin was 82 I collapsed and had to be taken by ambulance to the hospital.

Right now, what to do? I rang the emergency number of the cancer unit of the Ulster hospital where I attend. A nurse answered and I explained the situation. Unfortunately for me, the doctors had all finished at 5pm and it was 5.15pm. She kept me on hold while she searched for help. She returned to the phone and said that she would ring tomorrow after speaking with a doctor. That's today, Wednesday. The problem is that I have bone marrow cancer and my bone marrow now seems to be failing. I was told by a doctor before that I wouldn't be offered a bone marrow transplant because the operation would kill me. Is this the beginning of the end? 

Has anyone ever phoned the helpline number just to talk to someone? A member of the community team has told me that it would be a help to talk to someone. I think I will but firstly I will wait for the phone call from the nurse.

Take care and stay safe everyone

Tvman xx

  • It’s good you are back home now and can get help from your local hospital today.

    let us know how it goes xxx

    Ruth 

  • You are having a tough time recently hope you get sorted soon xxxx

    Flippen
  • Hi Tvman, I’m sorry to read about your blood results, I feel a sense of panic in your post and you’ve explained why you feel that. I have phoned the support line once. I got invited for jury service, for a minimum of 2 weeks when every 3 weeks I was going for treatment and blood tests and feeling fatigued for a few days after each treatment. I panicked as to wether to do it, postpone it or ask for a exemption and they very helpfully led me to make my own conclusion and feel confident to proceed with contacting the courts and wording it right.

    I have met with Ellen one of the helpline Macmillan nurses at a community meeting a few years ago when the role had been introduced and you couldn’t meet a more helpful and lovely lady.

    Take care KT

  • Hope you get back on an even keel soon Tvman.

    Stuart x 

  • Hi Tvman,

    I hope you've now had your call and getting some help with this latest set back.

    Wishing you all the best.

    Fi xx

  • hope you have had your call and have a plan of action, have you checked which is the best hospital to go to if you need to whilst in England, maybe the helpline can assist with that


    Richard

    be safe, be nice, be you 

  • I hope you’ve had the phone call from the nurse TVman and have been able to talk to someone from the community team.

    You have been having such a rotten time recently I don’t know what else to say except that you are in my thoughts and prayers and hopefully this is just a setback,

    Take care

    Patmart

  • Oh , that's not how your holiday was planned...but i'm glad you did go to see the kids and all. Sure it is a bad situation now...but you got the memories. I hope you had the call now? What now? You got to go to a hospital there? Or can you make it home? Sending you a big hug.

  • Oh , that's not how your holiday was planned...but i'm glad you did go to see the kids and all. Sure it is a bad situation now...but you got the memories. I hope you had the call now? What now? You got to go to a hospital there? Or can you make it home? Sending you a big hug.

  • Hi friends

    Thank you everyone for your replies, thoughts and advice. I'm so happy about that, it may not be more than a few lines from everyone but for me it puts a lump in my throat.

    The nurse did ring back, twice. She rang to see how I was and if I had taken my temperature, and I had. It was 36.3, the same as this morning. Then she said she would speak to a haematologist, which she did and rang me back pretty quickly. The doctor said that if I feel well, don't do anything but make sure to take my temperature regularly. 

    The nurse then said to take care and keep away from crowds. It's up to me to go anywhere but of course be sensible and keep my distance. I'm using my motorised scooter that came on the flight with me and I wear thick gloves all the time so I don't touch anything by hand. The nurse ran through dos and don'ts regarding foods, really what I mustn't eat such as shellfish, smoked salmon, different meats and any meat I take has to be cooked well, not medium rare or rare. All what a pregnant woman must avoid also lol. 

    Really, I've got to play it by ear, if I feel well then that's fine but if I feel unwell I have to go to hospital and the only one near here is Peterborough hospital as far as I'm aware but I'll cross that bridge when I come to it. 

    Yesterday we went to a Van Hage garden centre and stayed outdoors mainly until we had lunch. That was indoors but it's so massive a place, high high ceiling and cutlery comes in pre sealed packets. A lot of thought given to cleanliness, tables cleaned thoroughly and left empty for a while before anyone uses it. 

    My next appointment with the cancer unit is on Friday of next week. We are due to arrive home next Tuesday and I have an appointment with the nurse for bloods at 10.45am on Wednesday. 

    I tell you what, how quickly life can change when you have cancer. 5 or 6 years almost incident free and then wallop! Everything turned on its head. Chalk and cheese, all on a couple of blood tests.

    Thanks so much for your support everyone, it is invaluable. 

    Tvman xx

    Love life and family.