Tag: chemotherapy

Bobs Bowel 13 – Chemo !!!


It’s 19th May, 2025 and I have an appointment with an oncologist. This is to discuss potential precautionary chemotherapy following my hemicolonectomy at the end of March.

I am introduced to Dr Mutheramalingam, known as Dr Ram.

He seems to have done his homework, as he tells me all about the various conditions that I am receiving treatment or surveillance for, including Prostate Cancer, Type 2 Diabetes, and possible Non-Alcoholic Fatty Liver Disease (NAFLD). And, of course, not to forget the main event, T3 N1b Colorectal adenocarcinoma, the reason I am in his office.

Dr Ram procedes to explain the situation i.e. the positive results of the surgery and that the scan prior to surgery had not shown any signs of cancer elsewhere.

Interestingly, he mentions that the lesion on my lung seems to have disappeared. This lesion was strongly suspected to be Prostate Cancer, and is the reason I have been on course of regular Prostap injections. We discussed the possibility of my no longer needing the injections but he wanted to defer that discussion to my Urology consultant.

Dr Ram then went on to describe my chemotherapy options, which appear to one of two.

  • Option 1:
    Combined tablet and chemo infusion over a period of three months
    This option comes with a range of potential side effects which also include damage to my liver which is already under surveilance due to the NAFLD.
    This treatment offers a potential 12% increase in my survival prognosis.
    The chemo infusion would be administered at the hospital and therefore require multiple trips to the Queen Alexandra hospital, parking fees, and the time spent during the infusion.
  • Option 2:
    Tablet only treatment over a period of six months
    This option also carries the full range of potential side effects with only a 10% increase in my survival prognosis.
    The tablets would be self administered at home,each two week cycle being 4 tablets twice a day, followed by one weeks rest. During the weeks rest I would have a blood test and a telephone consult prior to starting the next cycle.

It seemed to me that option 1 only giving an additional 2% and also introducing the risk of liver damage was not a good deal. Also, the regular visits to hospital for the chemo infusion was not very appealing, given the many medical appointments I have had since diagnosis of the tumour.

I have therefore opted for option 2, the self administed tablet only chemotherapy.

Bearing in mind the positive results from the surgery we, the medics and me, don’t know for sure if I have any cancer in my body. This chemo, being precautionary, may not actually buy me any more time.

Since that initial oncology meeting I have started the chemotherapy regime having been prescribed Capecitabine. I have just completed my third cycle.

Capecitabine comes with a whole range of potential side effects which include the following:
Appetite loss, Diarrhea, Vomiting, Nausea, Stomatitis, Abdominal pain, Fatigue, Weakness, Hand-foot syndrome, Oedema, Fever, Pain, Headache, Hair loss, Dermatitis, Indigestion, Shortness of breath, Eye irritation, and Myelosuppression.

So far, after nine weeks, I am only experiencing fatigue which manifests itself by me dropping off into a deep sleep with little or no warning, usually when sitting quietly reading of watching the TV. Thankfully, this does not happen while I am actively involved in something.

In the first week or so I did notice, thanks to my smart watch, that my heart rate was spiking quite high. That is I was hitting over 130 beats per minute with no apparent cause whereas prior to commencing the chemo it was rare for my heart rate to go over 80 bpm. I contacted the oncology department and they told me it was probably my body getting used to the chemo. Certainly, the spiking has reduced, both in frequency and magnitude.

So here I am, cycle three completed. What now?

Well, due to a family issue I have had to travel and will be away from the UK for three months. This means that continuing with the chemo is problematic. Because of the type of drug that Capecitabine is and the need for regular blood tests, they cannot prescribe sufficient doses in advance for me to continue the regime.

Apparently taking a short break from the chemo is OK but two to three months may be too long for me to restart when I am back in the UK.

So I am exploring getting access to the local medicare here in Australian so that I can then see a doctor and hopefully get prescriptions for Capecitabine and also the requisite blood tests. There is a reciprocal health insurance arrangement between the UK and Australia but this might just be too complicated to manage.

I have applied to join Medicare and I am hoping that having been previously been accepted it will be pretty much a rubber stamp exercise.

We shall see!

Bobs Bowel 12 – Home Again


After ten days in hospital, I was home, at last. And what a difference it makes.

To start with, home is much quieter. As I said in one of my previous posts, I didn’t realise just how noisy hospitals are, I think the staff become quite blasé  about their speech levels, they also don’t seem to worry about banging cupboard doors and trays around. And then there are the various bleeping machines measuring life signs, pumping fluids and inflating air beds.

On the subject of machines pumping fluids i.e. saline drips etc.  The nursing staff seem to be immune to the sounds of the various alarms emitted by those machines. For example, I was hooked up to a saline drip and my pump started beeping. Nobody came but, luckily, I was able to see the small display screen which was indicating air bubbles in the line. I’ve seen enough crime dramas to know that air injected into your veins doesn’t end well. So I had to press my help button and a nurse duly arrived to redo the connections.

Anyway, being home means I don’t have to contend with the noise anymore. Another positive for being home is being in your own bed. My first night home I got seven hours sleep. Amazing, considering I don’t think I had a decent night’s sleep all the time I was in the hospital.

Sad to say I wasn’t able to match that in the days that followed, typically only getting three to four hours each night according to my smart watch. Having consulted “Dr Google” it seems that lack of sleep is not unusual after significant surgery. Thankfully, my sleep patterns have, slowly, returned to normal.

Another big difference between hospital and home is the attitude of the staff versus friends and family. In hospital the staff, whilst caring for you, encourage you to get up and about. The want you to walk the corridors, go and have a shower, and so forth. Movement helps with the healing process and also helps get the digestive processes going. Apparently it also helps dissipate the gasses in the abdomen. These are the gasses used to inflate the abdomen during the laparscopic surgery. Once home I found that, family in particular, were very protective of me. Every time I moved, someone was asking am I all right, do I need something, when all I am doing is adjusting my seating position as my bum has gone numb.

I did find that, as predicted, I was quite tired and dozed during the day. But that wore off over a few days and I was soon able to help with meal preparation, despite my wife intercepting me at every opportunity.

Of course I had to be careful about what I attempted to lift, push or pull. The standard “boiling a kettle” to make a cup of tea for two was a definite no-no. However, I am beginning to question the advice I was given. I think the advice about lifting and bending etc. is somewhat generic and based on old surgical practices. That is to say, based on abdominal surgery, which involves being cut from stem to stern with massive intrusion to the  muscles. My surgery was robotic laparascopic, so I only had a few holes where the rods were inserted, so minimal intrusion to the abdominal muscles. Yes, there is a letter box cut below my belly button, where they extracted the tumour and colon after it was cut away. However, I felt no muscular tensions down there. Rather, all muscular sensation tended to be in the upper abdominal area.

The point I am  making is that I did not feel any kinds of pain, soreness, or any other sensations around the wound site’s while I was moving around. Obviously, I didn’t want to do anything extreme but was I being too cautious!

I was also told that I shouldn’t drive  for six weeks. Or, at least, until I was able to perform an emergency stop without any pain. Also I had to be able to make rapid turns of the steering wheel. What wasn’t clear was who decides that I am fit, and how do “they” decide?

With driving, there is always the question of insurance. I had read that you are supposed to inform your insurance company that you have had major abdominal surgery. However, my insurance company does not have that requirement, but recommend getting your doctor to write a letter stating that you are fit to drive.

Getting to see a doctor might be a bit of a challenge here in the UK at the moment. I am told I will have a meeting in surgical outpatients in five  to six weeks.  That would tally quite nicely, if it happens.

I did phone the colorectal team and was informed that the decision, of when to drive, was down to me. I was also advised to practice braking in my car whilst stationary on the drive. If I experienced any pain, that would be a good indicator that it was too soon.

Another positive aspect to being home was having proper meals, with more solid foods on the menu. During my time in hospital I transitioned from clear fluids, free fluids, nil by mouth, clear fluids, free fluids and finally on to low fibre meals. On discharge I was expecting to be given some dietary advice, but that didn’t happen. So left to my own devices I have pretty much reverted to my previous foods. I have had jacket potatoes and ate the crispy skins, had roast chicken pieces and ate the skins. Also my daughter cooked us a chicken curry, medium heat. Oh what a joy as these were all things I had to avoid, from the day my tumour was diagnosed, up to the day of the surgery.

A few days after discharge I received a call from the colorectal team. The purpose of which was to inform me of the histology findings.

Firstly, the tumour removed was confirmed to be a carcinoma “something or other”. She did say, but I promptly forgot the name. Anyway, they took the tumour with good margins which were found to be clear of cancerous cells. So good news.

Secondly, they took out sixty five lymph nodes, of which two were found to have cancerous cells. Again, good news, but followed up with a precautionary offer of a consult with an oncologist.  Heavy emphasis on the “precautionary” statement.

So it is likely I will have some chemo. What form that will take I have yet to discover.

In the future, after five to six weeks I should have a Surgical Outpatients appointment.  Six months down the road I should have a virtual (telephone) consult to see how I am fairing. At the twelve month point I will probably be invited in for a colonoscopy. It is also anticipated that I will have an annual CT scan for the next five years.

So watch this space, for future developments.

Conundrum


I am currently languishing in the Perth suburbs, Western Australia.

Last October, my son-in-law Steve was diagnosed with a brain tumour (glioblastoma). Very quickly, following the diagnosis, he was whisked into hospital for brain surgery. At the time we didn’t know how much after care he would need but we offered to help out and so my wife and I travelled out to Oz to provide support.

After care wasn’t the issue. Steve really recovered well after the surgery with no real pain and none of the residual weakness that would have been present following an abdominal or chest operation.

No, the follow up treatment and schedule was the real issue.

The radiotherapy was daily, Monday to Friday, for six weeks. Whilst the chemotherapy was tablet form, taken daily Monday to Sunday during the same six weeks. Following the surgery Steve was forbidden to drive for the next six to twelve months. So, to enable my daughter to carry on working, my role was to act as chauffer. Daily trips to Fiona Stanley Hospital, Perth interspersed with trips to Sir Charles Gairdner Hospital, also in Perth. As well as various trips for blood tests and scans.

As the chemo built up in his system, the expected nausea and fatigue and exhaustion also built up. Alongside all this came the loss of appetite and corruption of taste buds.

And here is the conundrum.

What do you feed someone, who has all this going on ?

Even after the initial course of chemo and radio therapies has been completed, the dietary disruption continues.

After all, it is hard enough, under normal circumstances, to cater for the normal familial likes and dislikes of

  1. a granddaughter who doesn’t eat meat that isn’t chicken or ham (unless its a burger or a rissole, then almost anything goes) and has a limited set of veggie likes (eats broccoli and cauliflower but not green beans or pumpkin). By the way she loves fish but won’t eat salmon.
  2. a wife who loves fish especially salmon, has a short list of veggies (eats cauliflower but not broccoli and no sprouts or carrots) and doesn’t eat “spicy” food or creamy food i.e. white sauces are something of a minefield. Still waiting for the clear definition of what constitutes spicy.
  3. a daughter who also doesn’t like “spicy” food, likes fish that isn’t salmon or trout. Not sure about tuna ??? Eats most veggies (definitely no sprouts) and all non chicken meats have to be cooked to near charcoal point i.e. no pink

Before the tumour and chemo, Steve used to pretty much eat everything. Now he finds the flavour of most foods to be too strong, overpowering.

So, bland is the order of the day. Steamed fish or chicken predominates. Or the same but simply pan fried or baked. No sauces and definitely no herbs or spices. Some meals comprise just two tenderloin chicken pieces, total weight around 60g, steamed and maybe accompanied by a couple of carrot batons and/or a small broccoli floret.

So, how do I feed Steve without overpowering his hypersensitive taste-buds ? How do I coax him to eat a bit more as his energy levels are already depleted due to the chemo ? The lack of food does nothing to boost those already depleted levels. How do I introduce a bit of variety to his diet ?

Although he completed the initial concurrent chemo / radio therapies, my son-in-law has now started a new regime. He takes a five day course of tablet form chemotherapy, one week in four.

So, the disruption to taste, appetite, stamina and energy levels will be continuing for the next six months at least, maybe even for twelve.

Any suggestions ?