T-Cell Lymphoma – John’s Story

Hi guys, I have been unable to post for what seems forever. I am not making excuses but I really have not had the will to get to my keyboard. Before I get into doing the course again I am going to divert from my usual Partnership to Success blogs to a very personal matter in this post. My husband John has given his permission to tell part of his story to the world. Some of you may find it interesting and maybe even find it helpful.

T- Cell Lymphoma

Human Blood Cells

3D Illustration of human blood

Hubby has a progressive cancer; a strain of ‘T Cell Lymphoma’ and it has suddenly taken a turn for the worse. We have been told by his oncology consultant that this is a rare type of cancer. At the time of his diagnosis, in 2009, there were only eleven other people with strains of this cancer that were similar to John’s; now there is only John.  So at the moment John is the sole guinea pig for his strain of the disease. Samples of hubby’s tissues and blood have been sent all over the world for other specialists to observe and comment upon.

Chemotherapy

To date he has had three different sessions of chemotherapy, which involved cocktails of chemicals, sent through his veins. The last session was a major factor in causing his heart to stop and he was then moved to the high dependency heart unit in the middle of the night with his consultant at his side. He was in that unit for about a fortnight. The chemotherapy was approximately four years ago (2010); which is amazing because we were told he would be gone by the first Christmas after his diagnosis (2009). He swore he would never have chemotherapy ever again. His consultant also said he would not recommend it again unless it was absolutely necessary and there was no other suitable treatment available.

Total Skin Electron Beam Therapy (TSEBT)

In 2010 he also endured the external Beam Therapy at Clatterbridge Hospital. The consultant at this hospital was talking about finding him a hospice bed even before the procedure had begun. You can imagine the horror that those words caused for us all. We did not think this would be necessary and we were proved right because we still have John with us years later.

The Treatment

For this treatment he had to stand in different positions while radio beams were fired at different parts of his body. His finger nails were shielded with lead thimbles to protect them during this process. To receive this treatment he had to travel to the hospital as an outpatient every day for 20 days excluding weekends. Thank goodness for the volunteer hospital drivers; they saved us a lot of hassle. Different drivers would turn up each day to take him to the hospital and would bring him home hours later. These drivers are members of the public who volunteer their time and their vehicles for the use of hospital patients. We cannot thank them enough.

Radio Beam Side Effects

The Radio Beam Therapy did do its job in that it zapped a lot of the cancerous cells. Unfortunately the side effects were horrendous.

  • John lost his toenails; these are re growing but in a very bad way, so ongoing treatment is still needed for this.
  • His teeth are snapping off at gum level one by one. Today he still has some teeth left but the last one to snap off was only a month ago. This means trips to the dentist to remove the roots from the gum at each occurrence, very painful.
  • The whole of his skin was covered in brown spots; the consult would call him his leopard man.
  • His legs swelled and some very large blisters appeared, these were agony and he had to be admitted to hospital to sort them out. They pricked each blister to empty the fluid, bandaged his legs and sent him home. These deflated blisters turned into terrible leg ulcers for which the district nurses had to attend each day. These visits lasted for months until the nurses were satisfied that the worst was over. He now has large deep scars on his legs that look like the flesh has been scooped out of them; they also look very tight as if they are going to burst open again at any moment.

As you can imagine John vowed he would never go through all of that again.

MacMillan Nurses

MacMillan Logo

MacMillan Logo

John then went through a very poorly time and this time we did think we were going to lose him. He was in continuous pain, his body shrunk to near nothing, his cheeks sunk and his head and face looked just like a skull.  It was at this time that the MacMillan Nurses came on the scene. We were assigned one male nurse, Mike (not his real name), who would look after John and make sure everything that could be done to make John comfortable was indeed done.

Mike gradually increased the amount and dosages of the prescribed painkillers. All he had to do was telephone the doctor’s surgery and the prescriptions would be made available almost instantly. John continued on this high dose of morphine based painkillers until very recently.

What surprised me was that Mike was not only there for John, he was there for the whole family. He would speak to John about his condition and options. Then he would enquire about the family, if we had any questions he would answer them. He also helped financially by ensuring that John received any benefits he was entitled to. It is surprising the amount of financial help you can get that you are never informed about.

John eventually got stronger and Mike stopped coming, but I will always remember the wonderful services the MacMillan Nurses offer.

The Oncology Appointments

John continues his regular attendances at the Oncology Clinic in the hospital. He has three month appointments where: he is weighed, his blood pressure is taken and blood samples taken. When the results of the bloods come through he is called in to see his consultant. The story is the same at every appointment: he is examined, poked and prodded and then told that although the lymphoma is still present they can offer no treatment until the lymph nodes become larger again. The only treatment available would be chemotherapy, used as a last option, which the consultant was reluctant to offer and John would almost certainly have refused. And so it went on for a couple of years.

Six Months Ago To Current Time

Approximately six months ago John’s legs swelled up so much that he could not walk. They were tight as if the skin was going to burst and very, very, painful; they were bright red and burning to the touch.

Our GP, Doctor A, said John had an infection in his legs and prescribed a seven day course of antibiotics. These meds had little or no effect. So it went on for months taking different types of antibiotics nothing seemed to work, at first they would reduce the heat but a week after each course of antibiotics the symptoms would reappear again.

Then one day when we turned up for John’s next appointment we met another GP, Doctor B. This was about two months ago. He gave John a complete examination and had several blood tests done.  John had a high temperature which indicated a fever, by this time John was becoming very confused and could not even remember how to sign his own signature; the doctor put this down to the fever. The blood test results showed not only that John had heart failure but his red and white blood cells were not in the correct proportion, they were fighting each other.

Hospital

We went to see Doctor B for about three weeks on the run before he insisted that John should be admitted to hospital.  He was very concerned about John’s abnormal blood results. We were given a printed document containing all John’s blood results and his own findings and addressed it to the hospital admissions department of The Countess of Chester Hospital. So on the 29th April 2014 armed with this envelope off we went to the hospital. John really did not want to go into hospital but he went with trepidation.

Admission

The hospital system being what it is John could not be admitted to the ward which could deal with him the best. He first of all had to be admitted to A&E (Accident and Emergency) even though he had a letter requesting his admission from our doctor.

He spent a number of hours in the bays being questioned time and time again as to why he had come to the hospital. At this point he was very weak and becoming very confused, I was not happy with the situation. It was very frustrating; no one seemed to know what to do with him. Eventually he was admitted to the bedded unit of the A&E for the night. Here a group of final year doctors came to examine him, with permission, supervised by the senior doctor. They seemed to find him very interesting and popped back a few times to ask more questions or to request permission to examine him again.

Admissions ward

CT Scanner

3D man being scanned

In the early hours of the morning he was transferred to an admissions ward where a bed had been found for him. He stayed in this ward for a few days. During this time they took blood sample after blood sample; he was sent for a heart scan, a head scan, a chest and abdomen scan and x-rays. We were never told the results of these procedures it was always ‘we are waiting for the doctor to review them’. In this ward they also stopped his high dosage morphine based medication. It seems these meds helped in putting John in such a confused state. He is still off these meds.

Oncology Ward

Eventually he was transferred to Ward 50, hematology (Eng. spelling  is haematology) and oncology. Over the period he was in that ward:

  • Blood was taken at least twice a day.
  • It seems the trouble he is having with his legs may not be just and infection but skin cancer. Two biopsies were taken from his leg, one from inside an old ulcer crater.
  • Another biopsy was performed on a lymph node in his groin area.
  • Bone marrow was removed from his hip bone, this was one very painful procedure.

Discharge

3d couple going home

Us going home

 

John was discharged from the hospital on Friday at approximately 7.00 pm.  We have an appointment with his oncology consultant on the 20th May. Hopefully we will be given the results of all the procedures and give John some options for the future.

 

 

This has been an overview of some of the treatments John has endured over the last five years.
I may go into more detail in future blogs. But I think this is enough for now.

 

Take care

Pauline

 

 

Copyright: eraxion / 123RF Stock Photo

Copyright: dny3d / 123RF Stock Photo

Copyright: andresr / 123RF Stock Photo

12 Comments

  • Richie bell

    Reply Reply May 20, 2014

    Hi Pauline,

    I am always updated by Wendy and Sandra on Johns progress and to be honest his illness is so sporadic that it’s quite difficult to follow at times.

    This was quiet difficult to read and digest but has helped understand the struggles you have all endeavoured over this unjustified period of time, so for that I thank you

    As always please pass on my my best wishes to John and let him know he will be in my thoughts and prayers…

    Take care and speak soon
    Richie xx

    • Pauline

      Reply Reply May 21, 2014

      Hi Richie,

      this is John, Pauline is not too well just now so I am replying to your post.
      I would like to thank you for your kind wishes and prayers.
      Hopefully the future will be brighter.

      John and Pauline xx

  • Kim

    Reply Reply May 19, 2014

    I’m so sorry to heat of your husbands illness Pauline, I’m full of admiration for you, he’s very blessed to have you by his side. I imagine it’s your sheer strength that’s helped to pull him through so far

    • Pauline

      Reply Reply May 19, 2014

      Hi Kim I must admit it is a struggle at times, but we are very optimistic for the future.

      Take care
      Pauline

  • Graeme Ashe

    Reply Reply May 18, 2014

    Hi Pauline

    Wow I cannot start to even imagine the struggle your husband John, yourself and your family are going through.

    Like people have said I don’t even know how you have been able to undertake p2s. You really are an inspiration and I really hope everything works out.

    I am lost for words also..

    I hope the future is better, Good Luck & Best Wishes!

    Graeme

    • Pauline

      Reply Reply May 19, 2014

      Hi Graeme thank you for you kind wishes.

  • igor Griffiths

    Reply Reply May 17, 2014

    Well hello Pauline, your recounting of your families last 5 years puts every little troubling thing I have into perspective.

    Hopefully the results will give you a way forward and hopefully John will be able to turn a corner and start on the path to long term recovery.

    igor

    • Pauline

      Reply Reply May 17, 2014

      Thanks Igor, hopefully we will have some good news, or a least a way forward.

      Pauline x

  • Dan Tredo

    Reply Reply May 17, 2014

    Pauline,

    Thank you for sharing the tremendous struggle your whole family is going through. I will pray for strength and healing.

    Dan Tredo

    • Pauline

      Reply Reply May 17, 2014

      Thank you Dan
      that would be most appreciated.

      Pauline x

  • Sue Worthington

    Reply Reply May 17, 2014

    Oh my goodness Pauline, I am in tears for you, at what you and John and your family have endured.

    I do not know what else to say except I pray you get some answers and that you have John with you for a long time to come.

    I just don’t know how you can focus on anything else – you are amazing!

    Sending my very best wishes <3

    Sue

    • Pauline

      Reply Reply May 17, 2014

      Hi Sue thank you for your kind comments.
      It has been a struggle at times but we keep optimistic most of the time.

      Take care
      Pauline x

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