Ongoing troubles

This is proving to be the toughest time so far, he aches all over, even old motorcycle injuries are rearing their ugly heads. The fact he can’t get comfortable means he is getting hardly any sleep, so is also shattered all the time. This is the worst I have seen him look, he appears so defeated.

I just feel totally useless, spending most of my time looking for a magic wand to help with the pain

Not so much hit by a train, as run over and left splattered on the tracks. I keep my fingers crossed he will start to improve this week, anything would be a bonus, life is bleak in contrast to such a beautiful spring.

Even with all of this going on , there’s no avoiding the seansons,we now have a cheeky blackbird that visits us every day, started feeding him the odd biscuit and now he comes calling for his tea.

Back to work, next week, that’s going to be a shock to my system,still only two more paydays before redundancy, so soon will have lots of time on my hands, hopefully this will coincide with the end of the chemo and we can enjoy some of this time together.

Out of the trough

Slightly longer and deeper trough this time, maybe everything increases as each stage of the chemo progresses. We are also a day later in the process this time as the chemo was on Tuesday rather than Monday.  He is in a lot more pain this time,  the site of the original surgery seems more tender and sore than last time.

Not really sure how long this soreness is likely to last , plus he is continuing to have badly disturbed sleep, waking every couple of hours, sometimes with terrible night sweats . These new anti – sickness drugs definitely made him more irritable, they may well have helped with nausea but at times all he lacked was a spinning head !!

At least the original man is now back . He admits to feeling very fragile at the moment emotionally , even being around someone healthy  adds to his despair, we both seem to be increasingly  conscious of the battle he is in.

He hopes going through all this , is going to get us extra years, but these assurances just aren’t available. deep down he dreads that all of  this will be for nothing and that come June, it will be sorry but its back .  In some ways the first signs of spring make us both more aware of what he has lost. For a man who was always  so fit , becoming a virtual invalid at the moment , is proving very hard to tolerate.

We have also learnt that no emotional state stays the same for long , within only 48 hours, the outlook could be very different.

Irrational behaviour

Day 7 after round 3 of the chemo and we are now into the toughest part of the cycle, these three days after the steroids stop is always the hardest. He is really sore, in pain all over and totally washed out, this is when the breathlessness kicks in badly and it is a constant struggle to keep the nausea at bay.

It is also when he is hardest to be around, am constantly walking the tightrope of concern. Unfortunately, when God or karma, brought us together originally, they did include one big joke-tidiness, or rather lack of…..

On a scale of 1-10 where 10 is tidiest , he is an 8 and I am a 5 this is after years of compromise, initially we were a 9 and a 3.

Practically, this translates into whatever I do will prove to be wrong, combine this with an irrationality that seems to arise at this time and we are doomed, Captain Mannering.

Hence my attemps to make sure I don’t bring grass cuttings into the house along with the newspapers are met with a sarcastic commentary about how I am incapable of folding newspapers, matched by a lecture on how to correctly open plastic salad containers and fill a cafetiere.

Keeping up with the latest food fads is also tricky, its like dealing with a tricky three year old, hence last week banana were good , this week why on earth have I bought them. Last week, cold chicken was good, this week boiled eggs are best, don’ t even get me started on smoothie flavours…

Think this is the stroppy teenage phase, at least it only lasts around three more days not five years

A definition of hope

‘The power to be cheerful in circumstances which we know to be desperate”

GK Chesterton

Tube journeys from hell

Image by Annie Mole via Flickr

Round 3 of chemo is underway , the day started very badly with the proverbial tube journey from hell. Read a report recently that said the London Underground  broke through the 1 billion passenger level last year – felt as though most were on our journey. Never a pleasant experience, never mind being ill.

The day itself went OK, I left him at the hospital while I went off to work, we had a more civilised journey home thankfully. Realised today how much is required of everyone emotionally and mentally.

During the tube journey , there were times when  just wanted to get off and start walking ….away from reality , I suppose, then you realise however horrible it can be , there is still life and strange though it may seem  , still lots of laughter. His parents were over today , assembling a swing chair in the garden , fantastic idea to make the most of the sun  , when his dad made a comment about things to do before you  die !

There was that terrible moment when we all looked at each other horrified …. then burst out laughing at his dad’s mortified expression.

On new anti-sickness drugs this time, so hopefully these three weeks will be a little better, good weather definitely helps, here’s to a beautiful Easter

Colds ,chemo and boiled eggs

Image via Wikipedia

After a good Friday, the rollercoaster that is cancer, took another of its downturns. Looks as though he picked up a cold on Saturday , temperature at 37.3, so not too worrying , but his usual is around 36 .2 , so enough to cause much scanning of the chemotherapy guidance notes as to whether I should be rushing him to A & E.

He is also really sore, lots of aches and pains, not sure if this is linked to stopping the tramadol completely  on Friday, as well as reducing the gabapentin . He is still on these as a result of the surgery , so we decided to go back to the full gabapentin dose. Chemo round 3 is due for tomorrow, so back on the steroids as well, although at the moment not entirely sure if he will be well enough, keen that it isn’t delayed , so hopefully will be better by tomorrow.

He does seem a bit better today ,as he is immensely grumpy and contrary , just cooked him a boiled egg with toast, had so many instructions barked at me as how to make a  perfect boiled egg  , he was lucky he was eating it not sitting on it !!

Got papers through confirming my last day of work is 8th July , so reality starting to hit – will I ever be employed again? Obviously not based on my cooking skills.

CT scan and champagne

Image by njsnowdog via Flickr

For once a good trip to Barts, the CT scan didn’t have any nasties, plus you could really see the difference from the one in February , done only 6 weeks after the surgery. The lung has expanded further and the scarring has reduced considerably,glass of champagne at home to celebrate.

Unfortunately with the number of bank holidays due on a Friday we had a really long wait , although still didn’t manage to complete the Times crossword. The benefit of the wait was we had time for the blood tests to come back and they were all OK as well ( so now he will be on astragalus constantly).

All systems go for chemo round 3 on Tuesday, which means we have three days to make the most of better health. A sports filled weekend with grand prix, the FA cup  semi-finals and a spot of tennis for us.

Currently watching Saturday Kitchen, after my rather hit or miss chicken al limone last night , think I need the inspiration. I went for the stewed rhubarb for pudding , the crumble remained beyond me.

Am now officially redundant, so my 12 weeks notice starts now – very scary , will I ever work again !!

On the drugs update , we are trying another sickness drug this time, prescribed at Barts, this one will hopefully reduce the nausea at night and help with sleeping. Also making big effort to come off the painkillers, so no more tramadol and down to two gabapentin a day, feedback so far is sore but tolerable.

Waiting for test results

Image via Wikipedia

Much more typical spring weather today,notice the central heating has kicked in this morning and very welcome it is.
Have an exam this morning, as usual too little revision too late, in fact got up early for some last minute cramming but am writing this instead. An updated CT scan was done on Monday with results at our next doctors appointment on Friday afternoon, it’s very hard to keep control of your mind at times like this, when your imagination tends to turn very much to the dark side.
I think it’s a way of trying to be prepared for the worst on the day, the scan could show a recurrence since surgery, with no response to chemo, this is when information doesn’t help, as anything you read just reinforces the terrible stats around this disease and brings home the reality of the situation.

When the reality overtakes your brain, it starts to shut down and even simple tasks seem to take forever. I keep constantly trying to get a grip and keep my imagination under control, worrying doesn’t help anyone etc etc

So far this week have left my keys in the door twice, shut the cat in the wardrobe and put the post in the fridge !!!!

Glorious April Day

Another beautiful spring weekend, great sunshine and a marked improvement from the chemo, so good news all round. Managed to get out and about for all of Saturday , with a long walk along the Thames, lots of posh houses.Went through some beautiful villages , one with a lovely Norman church. The daffodils were still in bloom and the sky clear blue.

On Sunday we explored another part of the Thames, along the Kew houseboats, not for me thanks , the tide was a long way out and a bit too smelly from the mudflats. If you’re paying for a Thames view we decided would be good if the Thames was usually there rather than its floor.

Finished the day with the papers in the garden, listening to the birds hurling insults as the two cats

The next CT scan is on Monday , so fingers crossed no nasty surprises, also cutting back on the pain relief drugs that were a follow-up from the surgery, down to one tramadol a day and three gabapentin

astragalus and the immune system

Image via Wikipedia

There’s lot of info on the web about different therapies that can help in cancer treatment, not too sure about a lot of them , some claims have a whiff of snake oil about them, with very little evidence.

Did come across astragalus the other day,not too sure about some of the wider claims but did think there might be something in the evidence on supporting the immune system, albeit the evidence seems to be based on animal rather than human subjects.

Given the blood count didn’t recover too well last time, have decided to give this as go for the next two weeks and we’ll see how we get on.

Astragalus

Keywords: bei qi, huang qi, ogi, hwanggi, milk vetch, heart function, immune system

© Steven Foster

Introduction
This fact sheet provides basic information about the herb astragalus—common names, uses, potential side effects, and resources for more information. Native to China, astragalus has been used for centuries in traditional Chinese medicine. In the United States, the herb gained popularity in the 1980s. There are actually over 2,000 species of astragalus; however, the two related species Astragalus membranaceus and Astragalus mongholicus are the ones primarily used for health purposes.

Common Name—astragalus, bei qi, huang qi, ogi, hwanggi, milk vetch

Latin Names—Astragalus membranaceus, Astragalus mongholicus

What Astragalus Is Used For
Historically, astragalus has been used in traditional Chinese medicine, usually in combination with other herbs, to support and enhance the immune system. It is still widely used in China for chronic hepatitis and as an adjunctive therapy in cancer.
It is also used to prevent and treat common colds and upper respiratory infections.
Astragalus has also been used for heart disease.
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How Astragalus Is Used
The root of the astragalus plant is typically used in soups, teas, extracts, or capsules. Astragalus is generally used with other herbs, such as ginseng, angelica, and licorice.

What the Science Says
The evidence for using astragalus for any health condition is limited. High-quality clinical trials (studies in people) are generally lacking. There is some preliminary evidence to suggest that astragalus, either alone or in combination with other herbs, may have potential benefits for the immune system, heart, and liver, and as an adjunctive therapy for cancer.
NCCAM-funded investigators are studying the effects of astragalus on the body, particularly on the immune system.

Side Effects and Cautions
Astragalus is considered safe for most adults. Its possible side effects are not well known because astragalus is generally used in combination with other herbs.
Astragalus may interact with medications that suppress the immune system, such as the drug cyclophosphamide taken by cancer patients and similar drugs taken by organ transplant recipients. It may also affect blood sugar levels and blood pressure.
People should be aware that some astragalus species, usually not found in dietary supplements used by humans, can be toxic. For example, several species that grow in the United States contain the neurotoxin swainsonine and have caused “locoweed” poisoning in animals. Other species contain potentially toxic levels of selenium.

Tell all your health care providers about any complementary and alternative practices you use. Give them a full picture of what you do to manage your health. This will help ensure coordinated and safe care. For tips about talking with your health care providers about CAM, see NCCAM’s Time to Talk campaign.