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My husband Peter had Leukaemia.
His initial diagnosis was CMML, Chronic Myelomonocytic Leukaemia a fairly rare but not immediately life-threatening form. Unfortunately for him, a year later, his Leukaemia transposed into AML Acute Myeloid Leukaemia and it was then that he was told he had just three weeks to live. I then became his carer – a much underrated term in my opinion.
Being the carer is of vital importance to your loved one and is an emotionally and physically exhausting role.Jennifer Rogers
For Peter, Leukaemia was probably the worst form of cancer to have because of his dread of needles. His standard reply to the question regarding allergies was always, “only needles”. Initially, that was difficult for him and required a great deal of hand-holding and reassurance from his carer, me, but, the nurses in haematology had this extraordinary skill of being able to maintain a happy/chatty personality whilst skilfully inserting any amount of evil-looking needles before the patient realised the ordeal was over, all done! Of course, a PICC line, (peripherally inserted central catheter) was the answer to that problem and it was not long before he had one fitted.
After the AML diagnosis a decision had to be made as to which direction my husband wanted to take.
- Palliative care.
- The “usual” chemotherapy.
- A chemotherapy trial, which of course was more experimental.
Something for consideration, often not discussed, is that chemotherapy is not suitable for everyone and could involve a lot of complications and this was something we talked over thoroughly. We did, however, need to make a decision quickly. I felt it ultimately had to be his, but I would support him the best I could with whatever choice he made.
He chose the chemotherapy trial regardless of the possible side effects.
Before that life-changing blood test – even now I find it difficult to understand how a very simple blood test can change lives – we had, madly, decided to use a hotel voucher present for an overnight trip to Bournemouth. I think Peter just wanted to ‘hold on‘ to a normal lifestyle, but on reflection, he must have felt dreadfully ill. His consultant agreed to let us go on condition he had an infusion of platelets and two units of blood before we left the hospital, which was a deal we made willingly.
I drove us to Bournemouth.
Living in east Devon, it was a nearly two hour drive for us and it felt very obvious to me how ill my husband was in spite of his best efforts to be normal. I just played along with it, respecting his decision to go, but at the same time I needed to oversee the situation as much as I possibly could. Everything we did was done very slowly and gently, and we still managed to have a lovely evening meal in a place Peter liked, spending some truly special time together.
With the tricky nature of his illness, the next day we made an effort to visit the Russell Coates museum, but that became a step too far and we beat a hasty retreat home and back to the hospital.
With Leukaemia there is no surgery but a huge risk of infection, therefore, chemotherapy has to be in isolation.
Located in the Devon countryside, the air in his room needed to be filtered, the windows kept closed and a small cubicle between the doors. The isolation was about four to five weeks. Luckily it was not total isolation. I could stay with Peter as long as he and I wanted and he was allowed visitors as long as they were well – no coughs or sneezes, no tummy upsets and had washed and gelled their hands before entering his room. We were of course in the somewhat fortunate position of not having very young children to care for nor jobs to go to since we were both retired – incidentally, this is not how I would recommend how anyone should spend their retirement!
The first time my husband was kept in isolation was a sharp learning curve for both of us.
Interpreting what can and cannot be taken in with him because of infection control was tricky, not to mention navigating parking at the hospital and the park and ride system. Some of these were smaller challenges, but more and more to consider on top of our larger concerns.
On arrival at the isolation ward, the biggest challenge came in reassuring my husband that he had made the right decision and that he did have to stay. It becomes some of the smaller things that make it better, and he was delighted to find that he had his own en-suite bathroom. Actually, as soon as a very charming female nurse arrived to admit Peter, he was totally convinced about staying!
The whole isolation/chemotherapy process was completely new to me.
I had a good idea of what the process clinically was going to be as the consultant and specialist nurses were particularly patient in answering any questions we had, no query too minor or unimportant, but none of us knew how well my husband would tolerate the treatment. It was a toxic strength of chemo and it required staying in a room mostly on his own for five weeks – daunting thoughts for anyone.
It was probably his iPad which saved my husband’s sanity during those weeks, hooked up to hospital Wi-Fi. He also changed from being a man who had never written a diary in his life to one who recorded every fact he could collect regarding his treatment and progress. His notes were completely factual and spelt correctly even to the mostly unpronounceable chemicals in his chemotherapy treatment.
My husband learnt every person’s name who entered his room in a friendly way, quickly becoming best mates with the person who cleaned his room once, sometimes twice, a day and whoever was bringing him his coffee/lunch/snack/dressing his PICC line/doing his ‘obs’.
These long hospital stays are common with most types of cancer, and these are a few practical tips we found helped make life in hospital more comfortable!
- Bottle Green Ginger and Lemon Grass fizzy drink helps both the mouth and throat during Chemo, and also helps to control nausea.
- Lemonade lollies or ice pops to suck, or even chewing gums helps to moisten the mouth.
- If at all possible try to exercise! Use an exercise bike if available if only for a few minutes.
Though sometimes difficult, he always made a point of acting as if he was not ill. He would still rise early, shower and dress (if only in something comfortable like track suit bottoms and tee shirt). He would then sit in an arm-chair beside the bed, rather than in the bed.
- Always have a pen and notebook. I have always been a list person, but I became a notebook person during the worst of my husband’s illness. It can be so useful to note down what I needed to take back home or bring back to the hospital, to write down a little something to remind myself about things that needed attention as it was so easy to forget with so much information.
- Probably the most important tip is to make sure you are comfortable on the hospital visitors plastic chairs! If you’re going to spend a lot of time there, it will help you cope with the long hours. I have always been a list person, but I became a notebook person during the worst of my husband’s illness.
Blood test results became the most important and eagerly anticipated moment of the day and it was helpful to know that this is very normal for haematology patients. He would enter these results on his iPad and after a period of time convert these results into graphs which he would then show the medical students who would make a weekly visit with whichever haematology consultant was on duty that day.
Being on a chemotherapy trial brought some extra care
For example, even apparently smaller things, such as an expensive mouthwash (oral hygiene is vital in preventing any nastiness developing in that area), special eye drops as a precaution against ulcers developing under his lids. X-rays were taken at the slightest hint of a chest infection and there were constant checks on his liver, kidneys and heart.
Most important to us was the knowledge that every detail about his results was to be used for research, hopefully helping future patients who might find themselves in the same unimaginable situation my husband had.
Jennifer Rogers has written a book detailing her experience of becoming her husband’s carer during his illness, One Carer’s Account of Living with her Husband’s Leukaemia Diagnosis. This book is a testament to the love and care Jennifer gave to Peter and her writing details not only coping with Peter’s illness, but poignant memories of their life together. Many will relate to this heart-rending but all-too-common account of love and loss, and Jennifer hopes that her words might offer comfort and advice to those who find themselves in a similar situation.