My partner came home from work in Sept 2009 complaining of backache. He was in absolute agony and at the doctors frequently for pain relief. He was told it was siattica which usually resolves after 2 months and didn't warrant a CT scan until after that time frame. In the mean time he went to see a physiotherapist privately which didn't make a spot of difference to the pain. We had to phone 999 twice as the pain was so severe and it was the hospital who then chased his CT scan. I remember him coming back from the doctors with the results ... he broke down and told me that the doctor said he had cancer of the spine and had been refered to a haematologist.
We managed to get through the next week but with a lot of tears and fear and went to our first appointment thinking we were going to hear devastating news. The consulant told us that further investigations needed to be done and that at worst then he suspected it was in fact lymphoma and not cancer of the spine. We came away relieved as though we'd been given a second chance as he said out of all cancers if you were unlucky enough to get one then lymphoma was the 'best' to get as it is curable. He went on to have a lymph node removed from his armpit and an MRI scan and then we got the definite diagnosis that he had non-hodgkins lymphoma at stage 4 with bone marrow involvement.
He began R-CHOP chemotherapy with high dose steriods in Jan 2010 but about 2 weeks after his treatment he returned to clinic with severe back pain again. We were told that he hadn't responded to the R-CHOP and needed a more intensive chemo regime whic was Hyper-CVAD. We were told that his lymphoma which had started as indolent had transformed into a high grade agressive lympoma (although he said his lymphoma was quite unique and wasn't B-cell or Berkitts but something as aggressive). He went on to have 3 cycles of Hyper-CVAD but the same pattern appeared each time which was inbetween cycles once he stopped the steriods his backache returned.
He went for CT scan in late May which basically showed that the chemo hadn't worked and he now had lymphoma growths of a significant size in his abdomen and pelvis. His uretha tube is also being pressed by the lymphoma contributing to his pain and he arranged for him to have a nef bag surgically fitted to allow his kidney to drain. We were devastated by this and spent the following 2 weeks in a blur. He needed to take a lot of painkillers and also diazepam to calm his anxiety as he went to pieces with nerves.
We've had a serious talk with his consultant who said he was going to try another platinum based chemotherapy which is used for relapsed cases of lymphoma and where there had been no previous response to chemo. As this regime is highly toxic he was kept in hospital last weekend just to stay on a saline drip to look after his kidneys. Unfortunately his leg began to swell with all the fluid and we were told it was because of the pressure on veins n the pelvis stopping the flow. His leg is still badly swollen and has started oozing water and had blistered.
Today is the 3rd day of this new chemotherapy regime which is called R-ICE and they are using his leg as an outward sign as to whether the treatment is effective ie the chemo should reduce the lymphom which in turn should release the pressure on veins and his leg return to normal. His consultant has said that if his foot is as swollen in 2 weeks time then we have a very serious problem which I dread to think about.
He is only 45 and we have 3 young daughters (who aren't yet awar dad is so poorly) and its killing me to see his fear and panic as not sure how long the battle will go on or if its one that can be won.
I'm new to this site and still finding my way round but will try to update this blog with his progress ...... thanks for reading x
Update - 28th July 2010
Hi everyone - my partner has undergone 3 rounds on R-ICE and is having a CT scan in the morning with results the following day. I've just been showing him this and various posts and hes asked me to put a question to fellow NHL sufferers. A couple of months ago his left leg swelled up as a result of a tumor in his pelvis. The R-ICE treatment has now preumably shrunk this tumour and his leg has returned to normal. However, he gets severe aching and discomfort in in and struggles walking even short distances. Another main complaint of his is a lump which you can see if you're staring at his stomach. This also causes him major discomfort but his consultant has said it is a muscle which has dropped or moved. He did previously have well defined muscles due to manual work bricklaying but we haven't read anything else on the internet about these symptoms ..... has anyone else heard or experienced this sort of discomfort.
Many Thanks ... Janet x
7-Nov-2010
Haven't updated for a while as Carls condition got worse and have been to hell and still there now. Carlton died on Monday in the most evil way you could imagine.
Going back a few months his tumours shrunk after 3 R-ICE treatments but a scan after the 4th showed that the lymphoma had spread. His leg also swelled back up which indicated that all wasn't going well.
He suffered for weeks with his kidneys. He had his neferostomy bag removed and a stent put in which stopped working after a few days causing agony and had to have the bag put back on.
We were told about 6 weeks ago that the treatment hadn't worked and that there wasn't a cure. We were never given a prognosis which helped to keep him positive and we always talked about making Christmas and going on holiday in the new year.
He went on to have radiotherapy in his pelvis which releived the symptoms in his legs. However, it was only about a week later when the lymphoma touched his spinal cord and he was paralysed from the waist down. He refused to believe it was permanent and again stayed positive telling friends it was only temporary.
We still went to hospital to see his consultant every week and told him that we would like to continue with chemotherapy in a bid to dampen down his symptoms rather than just fading without a fight. He went for his chemo 2 weeks ago which was r-chop but although they gave it him they also noticed his breathing and cough. An x-ray showed his diaphram was enlarged and over the next couple of days his breathing got worse. I called an ambulance last Thursday and they said he had pneumonia and needed to stay in hospital.
He phoned me the early hours of Friday morning and I could just about make out him asking me to go and see him. When I got there he was sleeping but the consultant took me to one side and said "from the bottom of hearts, we know he will not recover from this. The antibiotics won't help now as his immune system is so low. I'm sorry, but this is the beginning of the end."
I made the decision to take him home as I'd promised he would never die at hospital. Against the nurses opinion as she made out that he may not survive the journey home an ambulance was called and I brought him home.
On Saturday he woke up and came round and although initally dazed he improved and later that night was sat eating blamonge and drinking.....everyone was amazed and filled with hope. I had called the doctor insisting on stronger antibiotics so felt that I'd given him every chance.
On the Sunday we got him into his wheelchair and he even wanted to go out shopping which we said a firm NO to in view of his chest and the cold weather. Later that night his breathing got worse again (rattling with mucus that couldn't be coughed up) so early Monday morning I called the doctor and got pescibed stronger antibiotics. The district nurses came out and told us that the syringe driver that had medication in it to dry up the chest secretions hadn't been working overnight hence the worsening condition. They gave him an injection of what he had missed but by then he was anxious and agitated and really struggling. The chest physio came out and only advised to give a standard dose of morphine to help with his cough. After that he settled down but unfortunately didn't wake up again and his breathing gradually slowed down and he died at 8:15pm.
For a young man to go through what he did devestates me and what I've wrote above is only a fraction of the story. We had an electric bed downstairs for him and the house has been turned upside down not just with medication but with things like nappies because of bowel incontinence (he also had a catheter) and my heart bleeds thinking of his dignity.
Its been a 12 month nightmare from start to finish and the only comfort I've got is knowing I was with him every step of the way and made the most of all our time. Even since his paralysis we went out every day with the help of friends and October has been nice enough for us to be out.
I'm glad the suffering and pain is over for Carlton but now I want the Carlton of last year back. He was the strongest, fittest man you could imagine. His character and personality is renound and was the main lad out of his group of mates. I just can't believed its happend to him.
The funerals on Wednesday and have been busy planning that, making a booklet for church, choosing music, making photo collages to put at the wake.
I look at photos of him when he was well and can't belive hes never coming back. All the fear, hope, ups and downs of the last year and hes lost the battle. I've been robbed of the perfect life we had and our children of a lovely dad. I've screamed and cried with anger but its over and nothing will change that.... I'm never going to see him again.
