Reports of my death are greatly exaggerated

Nigel told me that some friends at work were concerned that further chemotherapy treatment meant a relapse in my condition. I reiterated that the treatment I am under going is to prevent/reduce the chances of recurrence in the future. When I finish in early October I will have completed my 'nuclear' journey (hurrah!). 

Just before we went away last week I lost another dear Aunt, Shirley. Her death was totally unexpected and very sudden, she was a feisty woman, full of life who worked up until 3 weeks before she died. This was another terrible blow for the whole family, I have managed to rearrange my chemotherapy appointment to attend her funeral later in the month.

Devon was a bit like the Parson's egg, good in parts, for all but 2 days the weather was atrocious. I managed the drive down on the Saturday after my infusion but was shattered when we arrived. The extreme sensitivety to cold that I suffer in that first week after treatment meant that I could barely stand going outside in the inclement weather.

This picture shows how pathectic I am in that week, the gloves are thinsulate and my feet were already numb by this point. The beach was only a 10 minute walk from the chalet.
Stella ended up doing a lot of walking and taking the kids to the beach in the week, including taking Martha swimming in the sea! I on, the other hand, spent most of the time in the chalet reading or sleeping. The kids watched a lot of videos.

It wasn't all bad though....

Gabriel at Baggy point.

The kids enjoying Pasties and a sausage roll at Clovelly. Stella and I had a hot mackerel bap here and they were superb.

We also had some nice meals in 'The Thatch' at Croyde and 'Squires' in Braunton.

Unfortunately I picked up a virus and we came home a day earlier than planned, I became progressively more ill through Friday night and ended up in Pembury hospital in the early hours of Saturday morning only to be discharged at lunch time. The problem is that my treatment does have an impact on my immune system which makes me more susceptible to this type of thing, that said, talking the consultant even a 'normal' person would have succumbed. I just have to be as careful as I can to avoid contact with any such virus. I must confess that, in the early hours of Saturday, I thought this may be more sinister than it was.

I have learnt a lesson here, that first week after infusion is probably best kept with a low profile, certainly up until Wednesday. I think that driving down and back, the return journey took 9 hours and was very stressful, depleted my strength too much and contributed to the resulting illness. What I am relieved about is that so far none of the misfortunes I have suffered during this phase of treatment are directly attributable to the chemotherapy.

Finally, I am still receiving cards and well wishes from friends specifically, this month, cards from White and Blue watch Wandsworth. But everybody continues contact either through texts, phone calls, email, comments on this blog, visits or invites to 'brunch'. This contact is beyond value and continues to bolster my spirits.

A very different weekend

Thankfully, the pain and swelling in my left arm have subsided dramatically and this weekend we set out to complete Reuben's birthday celebration. We went to Borough Market for 'brunch' which was what he wanted to do last Saturday but held off so that I could go as well.
It was a glorious day and we walked along the river, stopping for an ice cream outside the Royal Festival hall and crossing the river to catch the train home from Charing Cross.

Face book photo.


I was exhausted when we finally got home and had to 'power down' for a couple of hours. I think its too early for the chemotherapy to affect my levels of fatigue, but I am still a little tender from the operation. I suspect its this and the remnants of recovering from the DVT that made me feel so tired.
Also this weekend I had brief period (less than 24 hours) of diarrhoea, I'm not sure what caused it but I drank quite a lot of carbonated drink on Saturday and I think this may have been the cause; I was warned against drinking carbonated drinks when I initially had the stoma.

Had a disappointment this week when I went for a medical for work, I was hoping to be signed off as fit for light duties. Alas that wasn't to be I am still sick pending specialist reports and have another medical on the 10th July, I will have completed 3 cycles of chemotherapy by then and will have a better long term understanding of how it affects me.

Yesterday (Thursday) I started my second cycle with the infused oxaliplatin conventionally through a cannula in my right arm. It wasn't painful just vaguely uncomfortable towards the end, I think I will use this method throughout the remainder of my treatment as it is the less complicated way of administering this drug. The initial side effects are the same as previously, initially extreme sensitivity to cold with pins and needles plus pins and needles in my arm where the drug went in, I expect this to dissipate within 5 to 6 days tailing off completely by about 8. It is all manageable and this time I have a drug (omeprazole) to counter the unpleasant indigestion and hiccoughs I had before. I take the anti sickness tablets religiously as prescribed for the first 3 days following treatment but trail them off to nothing by the 5th day they are very effective.

I feel fully recovered with no pain from the DVT and am still self administering Fragmin through injection every evening, this will be reviewed by my oncologist at 28 days but I suspect that I will end up with at least another month of injections. I am beginning to feel like a pin cushion!

I am beginning to develop a taste for the classics, I am well into the second book of Don Quixote and on recommendation I will download Voltaire's Candide to my Kindle. By coincidence I had previously heard a review of this book on Radio four's book programme.

This coming week we are going down to Croyde for the half term, I had hoped to get some surfing in myself but have had to shelve that plan for now (Bogus!). However, like any other over bearing Dad I am going to try and indoctrinate the kids with lessons and bribes to get them on a board (they're not keen and the water will be cold). We intend to have a very relaxed time and we are all looking forward to it.

God laughs at the plans men make

Returned home yesterday evening from an impromptu stay in Maidstone hospital at the weekend. After initially thinking everything was going to plan I had a pain in my left armpit, felt like bruising, which became worse through the latter part of last week. Eventually it became so intolerable that it woke me up in the (very) early hours of Saturday morning, after some debate Stella convinced me to ring the cancer emergency line. I presented at A&E and was taken straight through to a ward for assessment, I had a DVT in my left arm roughly from the PICC line insertion to my armpit (very glad I went in now!). The clot was treated with an anti coagulant (Dalteparin sodium) and within half an hour the pain  began to subside, the pain killers helped here I would imagine. I was moved to a cancer ward where the treatment continued with additional intravenous antibiotics to combat any infection and it was this plus a spike in my temperature that kept me in for a few days.
On reflection I should have gone in when the pain first manifested but I honestly didn't know how much pain was acceptable following the PICC line and infusion procedures. Apparently in a few cases a PICC line can cause the problem I experienced, I have had it removed and opted to have my next infusion in a more conventional way. Fortunately this whole distraction has not impacted on my treatment timescale with the only inconvenience being taking more drugs at home than I would have liked.

This whole episode placed a heavy burden on Stella, particularly this weekend as it was Reuben's 13th and my sister's 50th (two very significant birthdays). Not only has she had to deal with running me to hospital in the early hours and then bringing everything I needed later in the day she has had to maintain a sense of normality, celebrate Reuben's birthday and take the family to the 50th birthday barn dance in the evening the return  reports all indicate a good time was had by all.

I found missing these birthdays very hard.

Today is another day, Stella and I are going for our (now) customary walk in Knole followed by lunch in the town.

While in hospital I restarted reading Don Quixote, I had previously crashed through 250 pages and stopped, Cervantes' novel is a read that demands time to enjoy and given my enforced confinement I had plenty of it, his principle characters are both laugh out loud funny and tragic at the same time. Looking round the ward there were obvious contenders for the part of both the Don himself and Sancho making Cervantes' human observations as current now as when he wrote them.

Still early days

The weekend proved a mixed bag of experiences, Friday after the infusion I drove myself down to see the surgeon at Pembury and, other than the pins and needles, felt fine. Saturday I felt so good I did some maintenance on my mountain bike, changed the brake pads, but by Saturday night I felt dreadful. I had terrible indigestion and hiccoughs, these were so bad that I hardly slept at all Saturday night, Sunday I was completely shattered and again Sunday night I felt rough. Initially I put this feeling down to the steroids as I had no experience these drugs before and didn't really know what to expect. However, Stella did some Internet searching and the cause may the the anti sickness tablets. It seems that they can cause this sort of reaction in someone with a stoma. I am experimenting with not taking them at the moment, I never felt any nausea when I took Capecitibine previously and didn't take any anti sickness so until I can ask advice at the hospital I shall see how it goes.

Monday Stella and I went for a walk in Knole park, a very regular event now, It always feels good to get out in the fresh air and Monday was no exception. Even the pins and needles I felt in my face didn't detract from the walk. I had to sleep in the afternoon but it was a very welcome rest after the weekend.

And so to today (Tuesday) I feel fine as I write this, I seem to have recovered some of my energy. I might get my hair cut today and my eyebrows trimmed (beginning to look like Dennis Healey!). Later we're going to the hospital where Stella is going to be shown how to flush my PICC line. Assuming she is okay with this procedure the number of visits to the hospital will be reduced quite significantly.

Treatment day plus one

The pins and needles effect seems to be becoming more manageable. However I do get it in the tips of my fingers not just with an ambient temperature cooling but also if I pick up cold objects, a bottle of milk from the fridge for example. Also when I eat I get a sharp pain at the jaw hinge on the initial bite, this goes after a couple of seconds should be a deterrent to gorging on biscuits, so not all bad.
I had a shower today the first with my PICC line, Stella clingfilmed my arm just to give a bit more protection and she has already been on line and bought a more substantial waterproof protector.

In addition to the infusion here is the list of drugs I take on a daily basis through the cycle:

• Dexamethasone (steroid) 1 three times a day for the first 3 days after infusion.
• Capecitabine (chemotherapy) 4 tablets twice a day for 14 days after infusion
• Metoclopramide (anti sickness) 2 tablets four times a day for 3 days after infusion and 1 or2 four times a day as necessary.

This cycle is repeated 8 times through 24 weeks.

During the cycle I have been advised not to drink any alcohol. So, plenty of drugs (above), as much rock and roll as I want to listen too (and play badly) and as for the sex? well we'll give that a go when my lower stomach muscles and pelvis feel up to the task!

Another piece of advice was to not to sire children while I am going through this procedure, nice to know rather than need to know I thought.

I managed to move my surgeon appointment to today (Friday) so I'll get an update on that part of the treatment as well. The down side is that I suspect I will 'probed' again, not the most pleasant way to spend a Friday afternoon.

One down seven to go

Just returned from Maidstone hospital where I received my first infusion of oxaliplatin. Before the actual drug my PICC line dressing was changed, the line was flushed, then the chemo was infused, the line flushed again and we were given the tablet regimen. This whole process took a withering five hours! Hopefully the next visits will be slightly shorter. I have already felt some of the side effects associated with this drug, extreme pins and needles in my hands and face particularly when exposed to the (relative) cold. This sounds slightly effete but it was so extreme in my fingers that I couldn't pick anything up or open a biscuit wrapper. However, as I write this the effect seems to be wearing off. If  it carries on until the next infusion I have to report as it could lead to more long term/permanent nerve damage.
I was very nervous on arrival but, as throughout my treatment, the staff exude such confidence and knowledge that I found I became much more relaxed (if such a term can be applied to chemotherapy).

Once again I have enough and varied drugs in tablet form to open a small pharmacy.

Here is a picture of me receiving my first infusion and a close up of where the PICC line goes into my left arm. I had the PICC line put in yesterday and despite my fears I must say it was a completely painless procedure.

Note to self: try not to smile in every photo, it gives a distorted impression.

The PICC line enters my inside upper left arm into a vein, up to my shoulder, parallel with my collar bone and enters a large vein in my chest. I don't notice this fixing at all, it doesn't impede movement and I can safely shower with it (although swimming isn't an option). However, for me, the biggest advantage is that I won't have to have any more needles for the duration of this phase. This is because not only can chemo be put in, blood can be taken out. No more sweaty upper lip scenario at blood test time!

Note: After I made this entry Hannah came round and I opened the door to let her in. The relatively cold blast of air caused instant pins and needles in my face, principally mouth and nose, and my hands. This was unlike anything I have experienced before and felt like shards of glass, very uncomfortable. I also had an instant hot flush and felt nauseous, I took two anti sickness tablets as a precaution but on reflection I think this was just a shock reaction.

Normality

The Day household has begun to return to normality, Stella is back at work (working 2 nights a week at a local residential school), the younger kids are back at school and Tallulah is back at Uni. I have coped with getting up early to sort out the kids on the mornings Stella is working.
I crave becoming part of this normality and desperately want to rejoin the world, I still have a few hurdles to jump but am confident that I will.

One evening last week I went for a drink with some friends from work, this was a minor milestone in so far as it is always easier to say no to these invites but the risk is becoming reclusive and brooding. I enjoyed meeting up with them, listening to their woes and stories and generally having a laugh.

Also, last week I went to one of the boy's open evening, what became clear to me was that my situation has impacted on his performance at school. With hindsight (an exact science!) this should have been obvious, ripples in the pond. He hadn't told any of his teachers about me and consequently his down turn was seen as an unrelated performance issue. I explained the situation to his study group teacher and had a long chat to him about the need to let appropriate people know what's going on. He is a clever lad and I am sure he can pull it back.

I am walking 2 or 3 times a week now. I walk the same route around Knole park so that I can gauge my level of fitness. I intend to start doing some different, more taxing routes in the near future.

This week is a heavy hospital week, Wednesday Stella and I are going to Maidstone for me to have my PICC line fitted, this will take up most of the day. Thursday is my first chemotherapy session and later in the day I have an appointment to see my surgeon at Pembury, I am going to try and rearrange this as I don't know how I will respond to the chemotherapy.

I am still nervous but quite exited to get this phase underway, sooner I start the sooner I finish.

Just the medical at work later in the month where, hopefully, I will be signed off as fit for light duties. I love it when a plan comes together!