Chemo and after

Yesterday we went to Southampton General Hospital for my chemo.  I was put in a side room with an en suite so it meant Raymond could be with me most of the time.  This was fortunate as 12 minutes into having an infusion of rituximab I collapsed.  I have had this drug before but the lymphoma has moved into a different class, blastic mantle cell lymphoma which is much more aggressive.  I started feeling very sick and flushed.  I got up with Ray’s help to go to the toilet and collapsed.  Ray pressed the nurse’s call button but no one came.

Apparently the call button merely activates a light outside the room rather than at the Marsden where it actually buzzes until someone comes to the patient’s aid.  I was unconscious for a while during which time Ray called out to reception where someone told him that the nurses had gone for a cup of tea.  However, apparently after that the emergency routine was activated and soon there were six people in the room including the registrar.

The drug was stopped and I rested while various questions were asked.  Treatment later restarted with the drug being infused very slowly.  Gradually it was speeded up so I didn’t have to stay overnight.  I would have been afraid to as Ray wouldn’t have been allowed to stay and I didn’t have much confidence if an emergency were to happen.  They are all very nice and caring but having seen the watchfulness of the Marsden I am not as confident.

My oncologist rang this morning to say that he will not be continuing with the rituximab which he does not believe is very necessary, so this means I can have the next chemo at home.  I find it safer at home as a nurse is with me all the time and still has the equipment at hand if anything goes wrong.  I have been warned that things will get worse before I get better and I must contact the hospital about any side effects, not just of the chemo, but my very low blood count.  I may have to go into hospital for transfusions of blood and/or platelets.  I just wish I were nearer to the Marsden.

Dr M also told me that the lymphoma had spread to the bone marrow which is what we had all expected so it is probably pretty well everywhere, hence the decision to give chemo.  He is likely to arrange for another scan in two weeks and has asked me to monitor progress of my neck so he can see if this particular chemo is working.  If not he has already arranged with BUPA for me to have another chemo regime which is not yet licensed in the UK.  He is certainly doing his best for me by being very pro active.  I have had lots of lovely messages from family and friends which are a source of encouragement to us all.

I am in a place where I have never wanted to be

I am writing this on Tuesday evening after my last piece was posted.  I have to do something or I shall become very upset.  My oncologist rang just after we returned home and I have an appointment to see him tomorrow (Wednesday).  Prior to seeing him I shall have my blood taken so the results should be with him when he sees me at 1.30 p.m.  In addition, I shall have a chest x-ray.  He has had a word with the head of radiography who confirmed that more radiotherapy can be given to reduce the neck swelling but further treatment of the throat would cause lasting damage which they want to avoid.

It all comes down to whether the lymphoma is isolated to the throat/neck area or whether it is apparent elsewhere.  This may mean a bone marrow aspiration which is not pleasant.  However, it could be that lymph nodes elsewhere are affected without the involvement yet of the bone marrow.  At all events if there is disease present anywhere else, the most sensible course of action would be chemotherapy.  Unfortunately, there is no guarantee that any of this will work.  The lymphoma is now more resistant to chemo and is growing back more quickly.  I am in a place where I have never wanted to be.

After I was told that the transplant had not prevented the return of the lymphoma, I was informed that the future was uncertain and that it might be slow growing and there were a variety of treatments still to try.  I think we can dismiss the idea that it is slow growing.  I know that the medical personnel will do their best and try to keep up my spirits but it is not easy right now.

The festivities of Christmas and New Year have kept me going and apart from my thoughts in the small hours, I have managed to keep everything in proportion.  Whilst I try to be positive, I can’t say I am optimistic.  However, if I succumb to self-pity, it affects all the family so I must pray for the strength to cope and I hope that any regular readers of this blog will be kind enough to pray for that too.

This is the most difficult journey of all.  I know that there will be good times and moments of laughter as well as tears.  Other people in similar situations have maintained their hope, faith and good humour so I have plenty of examples before me.  Writing should help to keep me better balanced.  I don’t usually stay miserable for long as something pleasant invariably crops up not necessarily for me but for other friends and members of the family.

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I wrote all this yesterday.  I had received a couple of telephone calls which really lowered my spirits and Raymond was out for a short while.  Although he is affected by all of this, he tries so hard to keep me positive. I did consider not posting this but I am not always strong and this indicates the way in which events have an emotional toll.  I am feeling stronger today because we are actively doing something and we will take part in the decision making.  

Last day of the year

Last year at this time I was in the middle of radiotherapy and snow was imminent, familiar themes in December 2010. The main difference was that then I was preparing for the bone marrow transplant and we were all full of hope. In my letter to my donor I thanked her not only for giving me her bone marrow cells but also for giving us all those extra months of hope.

In February after lots of planning I went into hospital for five weeks. Nothing can prepare you for the isolation and the perpetual transfusions of drugs, platelets, blood etc. The long sleepless nights were difficult and the uncertainty of the outcome cannot be underestimated. However, on the plus side the staff understood our problems only too well, the chaplain visited me regularly to chat and to give me communion so I didn’t feel so cut off and my family were a constant comfort. If they couldn’t visit, they telephoned or left messages so although I was in isolation, I was connected to those I love.

Coming home was wonderful, but my family had to work hard to prepare the house so it met all the clinical standards and it worried Ray when I had stomach upsets and couldn’t eat. I was unable to sleep very much but I had all sorts of practical help from friends and very gradually I began to feel better. Then there was the onset of Graft Versus Host Disease, welcome in one way because the medical staff hoped it would resist the lymphoma, but causing enormous discomfort. For weeks I resisted going back on to the immuno-suppressant drugs but in the end I had to accept the fact I couldn’t go on.

The most difficult period was waiting after the scan to see if the enlarged nodes were the result of the GVHD or mantle cell lymphoma. The news that the lymphoma had returned despite the transplant was devastating. However, life goes on and we have to make the most of what remains for me. Although it is never far from my mind, life is going on all around me, people are doing interesting things and there is a lot to laugh about.

Perhaps because so much time has revolved around medical procedures, I have specially enjoyed my trips to London, Wales and France. I treasure the weekends when the family visit and time spent with Raymond whatever mundane tasks we may be doing. The journey I have embarked on now is different from the one I expected and there is no road map. The medical staff are doing all they can to prolong my life and I am most fortunate that I can trust their best intentions for me.

Tomorrow is the start of the New Year and is full of promise for so many people. For some of us it is different. I find myself going over so many memories in my mind. The turn of the year is a time of remembrance, nostalgia and for people like me – a little melancholy, something I felt yesterday on our journey to the Marsden. And then I think of John Keats knowing he was going to die of TB at 26 yet composing the poem To Autumn – melancholic but acknowledging the beauty not just of the season, but of that time in his life. May the coming year be special for us all.