diamondsgirl

Day one chemotherapy

2011-09-30T10:22:26Z

That is the most scared I have been for years!! We began the journey to the hospital at 9.30am for an 11.00 appointment Bit better than the 6.30 start on Monday for the portacath to be inserted, but nonetheless after a sleepless night, early enough.

Although I have been through second-hand experience of chemo when my mother was treated some 25 years ago, this time for my husband, the feeling of overwhelming despair was enormous. The hospital were great when we arrived but annoyingly we had to wait in reception for half an hour before being seen which added to the nerves, but the lovely nurse soon put us at ease and my husband and I were taken into this semi-circular room around which were lots of high backed chairs (which could be reclined). In each chair sat someone hooked up to their chemotherapy drugs - a most sobering and humbling experience.

After seeing the Prof and his team, where everything was explained about the procedure and consent forms signed, it was finally hubby's turn to be hooked up. I am so impressed with the portacath, where after a little fiddling the line was attached and through this went the steroids and washes before the first two huge phials of pink chemo were slowly pushed through. Then the second chemo drug which was in a small container, was attached to the portacath and this is to stay in place for one week, to be replaced for another week next Thursday. Then two weeks free before starting all over again.

We have been told that there is no guarantee this will get rid of the tumours, but if the smaller tumours do disappear then they might operate to take away the larger one, but right now the aim is to stop the cancers growing and effectively kill off the cells. Hubby was not happy that - he expects it to be gone and gone forever!

Going home on the underground and mainline train was eventful, as the tubing from the portacath could clearly be seen from under hubby's shirt - everyone gave us a very wide berth on the trains. When we got home we tried to tape up the offending wires but then panicked as we could not see the drugs going through.

This morning, still concerned, hubby has returned to the hospital to get them to check out everything is in order as neither of us could see the fluid going through - first night nerves I guess!! But this time hubby went on his own, and I am so nervous waiting for him to come home, hence this blog!!

I am so angry - I want to go out and should at the youngsters I see smoking STOP!!! It is not now it is 20 years along the line that you will most likely be suffering the effects and putting people you love through the trauma of watching you suffer..... then I calm down... but it is stirred up by seeing all those chairs and all those drip stands - and I am angry again!!!!!

This weekend is my birthday and that of my son who was born on the same date as me... we always celebrate birthdays in my family big-time, so although hubby has been told to lay off alcohol except for maybe a glass of wine twice a week, I am sure we will be raising a glass to the defeat of the enemy!!

Just had a call to say they have checked everything out, told us to weigh the chemo bottle today, tomorrow and Sunday and if the weight has not gone down to return to the hospital to get it checked again. No like this!!!!!!!

Portacath

2011-09-26T16:49:39Z

Portacath went in today - up at 5.40am and taxi at 6.30am to get us to the hospital by 7.30am.... what an early start!!

The staff were wonderful and very reassuring and cheerful - we met the anaesthetist and surgeon and then my husband was taken to surgery at 8.30.

Whilst he was away I took the opportunity to meet my godson, whom I had not seen for some time as he had been away. We met for breakfast just around the corner from the hospital and it was wonderful to talk about him and what he has been doing and just forget even if only for a few minutes about the time ahead for my husband and I.

Reluctantly I left this wonderful young man and went back to the hospital just as my husband had been brought back up from recovery. Apparently it was a Monday with machinery and equipment in the operating theatre breaking down, so it had taken longer than planned, but husband was in good spirits and remarkably with it. We left the hospital at 1.00pm (in a taxi yet again) and now hubby is resting.

I have realised I must get myself organised with regard to planning meals etc., and not rely on last minute defrosting and panic trips to the shops, and on Thursday when the first chemo is administered so I will have the chance to ask about vitamin supplements and dietary advice.

I shall be glad to see the end of this week, because although it is my birthday on Sunday (and also coincidentally my son's) it is not something that takes priority right now.... I just want to see what, if any reactions my husband will have to the chemo and find out when the next round will start.... so much to learn!

I am feeling tired now and I can feel my control slipping sometimes but at least writing on this blog helps me get my fears out of my system and to cope better with what may lie ahead.

Pre-treatment tests

2011-09-24T11:04:32Z

This week seems to have been one of being lost and walking corridors of the hospital in an attempt to find different departments. The staff have been amazing - radioactive isotopes were injected into my husband before a special x-ray to check out his kidneys and heart, some of which was to ascertain what level of chemo he could tolerate. The good news (!!!) is that it looks like he has a high tolerance level and his organs are in good order.

Then to the day assessment unit as on Monday next week my husband has to have a portacath inserted into his chest wall to take the chemo, which will start on Thursday. The drag is that we have to be at the hospital at 07.30 and this branch of the two hospitals is miles away and absolutely little or no parking nearby, whereas its sister hospital is not far from us with good if expensive parking. Apparently the treatment has to take place in the Chelsea Marsden so it is a taxi to and from there on Monday as public transport is not allowed after a general anaesthetic. I am thinking I can ask the hospital about transferring to Sutton branch but do not hold out much hope. It is fine if it is a one off at this time of the morning, but the costs of the taxi from home and back are exorbitant and depending on his reaction to the chemo, we are not at all sure if hubby will be able to work.

On the up side, hubby seems more positive, although he did mix up that the specialist warned that the chemo treatment is 50/50 and took it to mean that his survival rate was that, but I know that is the first step in drugs and that there are others which can be tried.

Big birthday month approaching, and my husband is planning my birthday family lunch, two days after his first treatment, so his optimism is rising thank goodness.

It still feels that we are in a vacuum and I suppose the reality will not hit until he has his first chemo. He gets tired very quickly and I have noticed he is slower in walking and more laboured - not sure if this is the disease or just him being aware of his body.

So many friends are contacting us now, and my husband is really touched to get the calls of encouragement and I think this is his journey to accepting the diagnosis and going forward with the support of not only his family but friends and colleagues as well.

Next week is another chapter - for now I am looking after our daughter's two little boys for the weekend, and it is a delight to be thinking of something else whilst they are here.

Healing thoughts and prayers are winging our way, and now we start the fight in earnest ...

One week on..

2011-09-19T09:00:54Z

One week ago today we were hit with the news that my husband's cancer had returned - 7 days and nights during which our world has been turned upside down. We are now waiting to hear when the chemotherapy will start - I keep wishing the phone would ring then at least we can set targets, but the silence is deafening.

My husband has returned to work whilst we wait to hear, and that is good. He was getting very depressed at the end of last week and it is great that he is able to be with his friends and not have to think about the diagnosis, just get on and concentrate on his music.

I am having a bad day so far, and it is not even 10am, but the day will get better, it is just when I am on my own I suddenly get overwhelmed by the enormity of what is going on... nothing particularly triggers it, I just want to sob for this man and his difficult road ahead.

Just heard from the hospital that they are going to do an EDTA on Wednesday morning then a mugger scan at another hospital after that..... all these new phrases and tests which until today I knew nothing about, it is another world and that is probably the scariest thing - we are venturing into the unknown.

We have incredible family support and for that I am so grateful. I have a lovely 90year old mother in a Nursing Home and when I visit I want to be a little girl again and have her put her arms around me and tell me everything is goling to be alright, but of course I cannot tell her what is happening.

I know I need to be strong, and I shall be after this little blip - but thank goodness for this blog. Tomorrow is another day.....

Discovery - the journey of a carer

2011-09-16T19:53:20Z

When my husband was rushed into hospital some six months ago - it ws terrifying - an emergency operation revealed a gapefruit sized tumour near the bowel, which has burst and extensive surgery was the only option.

Thankfully for him, he did not need a bag after the op as the surgeons were able to cut and resection the part of the bowel affected. The enormous shock of the diagnosis some 4 weeks later of a very rare type of sarcoma was enormous, not least because my husband always believed he was invincible and nothing like cancer could touch him.

The first CT scan post-surgery showed no trace of any tumours and my husband returned to his very demanding job just six weeks after the op, as if to prove his strength both to others and more importantly to himself.

We had a brilliant holiday in August, but I noticed that my husband did not have the usual energy to do much, and was noticeably different from his usual self. Thus to me at least, it was no surprise when the next scan showed a return of the tumours, this time a large one in the middle of his abdomen and three smaller ones around the site of the original.

Now he is waiting to start chemotherapy - it goes without saying the family are devastated and my husband is totally and utterly in a state of shock - how could this happen to him, how dare the cancer return etc etc. He will lose his hair with the treatment, and he mourns that as although he is over 60 he is one of the few in his profession who still has a full head of hair. He is determined not to lose any working days and is regarding the chemo as a nuisance to be tolerated. He does not even for one minute, think that the specialist's warnings of fatigue or nausea applies to him, and for the moment we are not about to contradict him.

For me? - I watched my mother spend six months in chemo and six weeks with radiation treatment for a supposedly terminal cancer - she made it but the thought of my husband doing through what she did appals me. I know he will not be as compliant as my mother, nor as optimistic, nor see the light at the end of the tunnel, but she survived and is now aged 90.

He seems to think he is definitely going to die, and whatever encouragement I try to give him is as nothing. I am sure this is initial shock and that given time he will change his mindset, but in the meantime, I worry that he will give in and just let this cancer take him over and give up the fight.

What a relief to just sit down and write this, to be able to say what I feel about what I am witnessing - sleep is difficult and when I am with my husband I am stronger than when I am alone, even when driving the car - I am overcome with grief that this strong man has to face this ordeal alone, and alone he must be, because I and my family can give him all the support we can, eventually he has to fight this battle on his terms, not ours.

Next week will be the first step in this battle........ but we will win, of that I am convinced, now I need to know how to help my husband believe that.